More about Austin, Filling in the Blanks & Meds.

I never got to the part in my last post about how I shocked Austin ...  although, the day I "made" him stay in his room was one of those times. I guess a better phrase for that would be 'make an impression on him'...  you have to make Austin understand 'why' he can't do certain things or act a certain way, not just punish him for it. Austin still can push me to that point upon occasion, but he knows now that when I am that angry with him, and I send him to his room..  he needs to stay there until I have calmed down enough to talk with him. I no longer have to 'make' him stay there. That one time did the trick.

Austin must have been about 5 years old, I picked them both up from school that day, and had to make a trip to the grocery store for a few essentials. I had explained to both of the boys that were were only getting these few things (milk, bread, a few other things we needed) and NOTHING more. So we go in, I get what we need, and we head to the checkout. We were standing there waiting for the customer in front of us to get done, and the boys were looking at the candy sitting there beside the register. They both asked for some, I told them No and reminded them of our conversation we had before we entered the store. They both pouted a bit, but I finished checking out and we left the store. I put the boys in the truck first (as I always did) and then loaded the groceries in the back. It was about a 10 minute ride from the store to our house, and on the way I heard this smacking sound in the back. I pulled to the side of the road, and turned around to look in the back to investigate who the smacking sound was coming from ...  Austin's face was covered in chocolate. I knew that he didn't have candy when I picked him up from school. He had stolen a candy bar from the store.

I turned the car around and went back to the store. I made him take the half eaten candy bar back into the store and hand it to the manager. I made him apologize to her and then he had to pay for it with 'his' money, and he didn't get to keep the candy. I had the manager throw it away.  After we got done at the store, I drove to the police station and had a police officer talk to him about what happens to people who take things that don't belong to them or that they don't pay for. He was very nice and gentle with Austin, but explained that it was wrong and that people who steal go to jail. Austin was scared and very upset, but he learned his lesson. He promised the police officer that he would never do anything like that again, and he apologized to him for stealing as well.

I have to say, that the older Austin gets, the better he gets. He is much easier to manage now than he was then; he listens and minds more. He always seemed to understand more than Andrew did, but it was harder to manage his behavior; where as, Andrew didn't understand as much, but his behavior was easier to deal with and manage.

I had to explain things more to Andrew, show him what I wanted from him, and explain until he "got it".  Andrew still has trouble with certain things...  like understanding Idioms, Figures f Speech, inferencing, etc. Andrew is, and always has been a VERY literal thinker. We have fun with it though. I remember one of the first times I used a figure of speech with him. It was raining really hard outside and we were watching the rain from the window. He must have been about 6 or 7 years old at the time, I said to him, "Gosh Andrew, It sure is raining cats and dogs outside, isn't it?"

He looked at me like I was the stupidest person on the planet, and then he walked away from me. I couldn't help myself..  I giggled a little and called him back in there. He came to me and I asked him if he knew what that meant. He shook his head NO, so I explained to him what it meant. After I finished explaining, he thought that was the funniest thing he had ever heard...  he ran into where his Dad was and told him, "Hey Dad, it's raining cats and dogs outside...  that just means that it is raining really hard outside. Isn't that funny?" The whole time he was telling Rich this..  he was laughing uncontrollably.

There was another time I remember.  The kids were on a break from school, and Rich happened to be home for whatever holiday it was....  I told the kids to go get their shoes on because we were going to go get something to eat and then do a little window shopping. Andrew had a confused look on his face, but went and got his shoes. He came back a few minutes later, still with that confused look on his face, and asked, "Mom?  You said that we were going to go window shopping, right?"

"Yes, sweetie. That's right," I replied.

Still looking very confused he said, "But this is a new house isn't it? Why do we need new windows?"

Rich and I both laughed a little, and then explained to him what "window shopping" meant. He thought that was the coolest phrase after that and used it quite often...  each time explaining what it meant after he said it. We have several books here now that have different idioms/FOS in them to help him learn. We also use FOS with him as much as we can so that he will learn. He is good about asking now, when he doesn't understand something, so that we can explain it to him.

It's little things like this that we all take for granted, and just know...  that Andrew and kids like him have to be 'taught'. He also doesn't understand 'feelings' very well. He knows, if you are crying, that you are sad..  and if you are smiling or laughing, then you are happy. However, unless it is obvious..  he doesn't get it. He even still gets some emotions wrong..  like when he is bored, he will say that he is sad. We are still working with him on these issues.

Both of my kids are a delight (most of the time) to be around and I feel blessed that God choose me to be their Mom. Both of them can be challenging in their own unique way, they are delightfully different, and get along well with each other. There is never a dull moment in our house. 

Andrew learns more and understand more each and every day. Austin is doing much better now learning to control himself and managing his behavior. It is constantly a work in progress around here, but they are doing it and I couldn't be happier. They both love home schooling, because they are surrounded by people who understand them, accept them for who they are and help them along the way...  something that neither one of them got in the public school system. I may not always do things in the conventional or traditional way...  but I want to make sure that my kids know that there are consequences for their actions and behaviors. If they don't learn that here, while they are young..  they will be in a world of hurt when they are grown and out on their own. People on the outside aren't/won't be as understanding or forgiving as we are here.



Here is the post i had previously made about Austin, the medications we have tried with him and what we are trying now.

For those of you who know me and my family..  Then you most likely know that my youngest son has ADHD, and a pretty good dose of it at that! He was diagnosed with this approx. 2-3 years ago. We tried the traditional meds that doctors prescribe for this condition -- and let me just say, that it has been a roller coaster, and not one that has been very fun! While one of the meds we tried did help greatly for his focus, attention, and calmed him down as far as his impulsiveness, and the bad behaviors that come along with all of this...  They ALL have had REALLY bad side effects. The top three being:

1)  His heart was beating too fast (this one started the roller coaster for us b/c the doc changed his meds for this one),
2)  They all suppressed his appetite to the point of him not eating AT ALL,
AND...
3)  When not doing something that required his focus and attention (ie: schoolwork) he walked around like a zombie, never smiled and just didn't seem happy at all.

NONE of these are ok with me! We like his personality and have never wanted to suppress that! We just wanted a calmer, more focused child that could get through his schoolwork with ease and hopefully learn something in the process. He IS, after all, a very smart little boy -- but with his brain racing 900 mph ALL the time, it is very hard for him to concentrate on anything for more than a few minutes at a time. This makes schooling VERY difficult for him!

I have recently taken steps to try to help him in other ways. He has had some medical things going on lately that have prevented him from being able to take his "normal, doctor prescribed meds" and because I home school him, I KNOW that he HAD to have something to help with his focus and attention or I would NEVER be able to get him to do any schoolwork during this time. I had heard about supplements helping with lots of different things, so I thought I would start researching this avenue. After all, supplements are "all natural" and not made with all kinds of crap that make the benefits not worth it because the side effect are too horrendous!!

I am pleased to say that we have found some things that do work! While we haven't quite found the right combination just yet, I AM happy that we are at least headed in the right direction! The only "bad" side effects of this route, (that I have seen so far, anyway) is that Insurance doesn't cover the cost of any of it -- which I think should seriously change, btw -- AND he is now eating like crazy -- which has made my grocery bill go way up! However, I do believe that we can live with these things!

So, while I continue my/our journey to find the right combination of things that will work for him..  I will probably be posting about different things that I find interesting, and when I/we try these products, I will post how it helps or doesn't. I also welcome any HELPFUL comments/information from anyone. If you know of something that has worked for you and your child I am interested to know. If you have rude comments about how I should follow doctors advice and put him back on "their" recommended meds..  I am not interested! Thanks for listening and following us on our journey of finding ways to help my son the Natural Way!

About Austin....

Where do I start with Austin????  Well..  He has always been a bit more difficult for me....  more difficult to understand, manage, and deal with. I Love him just the same..  but he has been harder for me to...  well....  'figure out', I guess.

Even with all of Andrew's 'oddities' and 'eccentric-ness', his meltdowns were always very quiet and subdued. He just fell to the floor and curled up in a ball..  until he 'felt better'.

Austin was the loud, boisterous, stubborn, 'gonna do it my way', very strong willed type. He showed signs of this even early on.  I remember one day, he was about 3 or 4 months old, I had nursed him, changed him, burped him, rocked him to sleep, and then placed him in his bassinet...  he was sleeping so soundly, as he usually did. I decided to go out to check the mail...  I wasn't gone but maybe a minute or two, and as I got closer back to the front door I heard Austin screaming bloody murder (LOUDLY screaming, squalling). I ran in and picked him up and he was fine after that. He hardly EVER did this. He was a good sleeper...  once he was out..  he was out for a while. I still don't know what happened, that woke him up and put him into to this panicked state.

His first Christmas, he was around 9 months old, he wasn't even walking yet..  but when we brought the boys out in the living room to see all the stuff Santa had left for them...  Austin's eyes got as big as golf balls...  he was so amazed, and high-tailed it over to all the 'loot' and started playing with EVERYTHING --  his stuff, Andrew's stuff...  ALL OF IT. He was crawling at this point, but not walking yet and barely standing/pulling up on things...  but this day..  he pulled up on it all just to play and see. I was completely amazed...  because, well..  Andrew never acted like this --EVER! This was one of our first clues, I think, that Andrew was different.

When Austin turned one --  at his birthday party...  we had done the cake and ice cream first ..  so I could clean him up and then do presents.  I took him into the living room where everyone and all of his presents were... to sit with him and 'help' him open his presents. Someone had given him a drink from McDonald's a few minutes before that and he was walking around sipping on this drink. I walked him over to where his presents were, and 'tried' to take the cup from him. He needed both hands to open presents, after all. He proceeded to scream and squall and throw a fit. He was not at all interested in his presents..  he wanted that drink. He didn't stop his fit until we gave him the drink back. I ended up opening all of his presents for him.

When he was about 18 months old...  he decided that it would be a good idea to get an old Christmas tin that I had on the bottom shelf of our bookcase and play with it. I was fine with him playing with it, until he worked the lid off and started standing and jumping on it. I didn't want him to dent in the lid of the tin, so I went over and moved him off of it, picked it up and placed it back where i had it on the shelf. Austin immediately went back over and got the tin again, worked the lid back off, brought the lid into the living room, where I was, dropped it on the floor in front of me and proceeded to stand on it again. So I, calmly, walked over to him, moved him off of the lid, told him "NO!", and placed the tin back up -- but on a higher shelf. A few minutes later...  he was back in front of me with the lid of this tin, placed it on the floor in front of me again and stood on it (as if to say..  I am gonna stand on this whether you like it or not!). I walked over to him and swatted his little leg once, told him "NO!" again, and picked it back up and placed it on the top shelf of the bookcase. A few minutes later..  he had that damn lid again..  I guess he had climbed the bookshelf to get it, (I don't even want to think about that though, because it wasn't a very stable bookcase..  it was one of those cheap ones you get from Wal-mart), he dropped it in front of me again and stood on top of it....AGAIN! So I popped him again, told him "NO!" again, and this time I hid it from him. This is just how he was ...  if he got it in his head that he wanted to do something.. come hell or high water..  he was gonna do it. You could beat him until he was blue (not that I ever did that...  but just saying)...  he didn't care... he was gonna do it anyway.

I tired everything with him, as far as discipline goes... and nothing seemed to work except for shocking him into submission (I will explain about this in a bit). I tried redirecting him...  that didn't work, he still went right back to what he was doing before. I tried time-outs..  he wouldn't sit there..  no matter how many times I would take him back and sit him back down.. he still got up. I tried sending him to his room...  he wouldn't stay, unless I held the door shut on him. I tried ignoring the behavior and walking away..  he followed me where ever I went and would proceed with his fit. I tried talking to him, and that didn't work. I tried spanking him..  sometimes that worked and sometimes not. It was REALLY hard to discipline this child, until he got older.

Now don't get me wrong... Austin can be one of the sweetest, most loving little boys that you would ever want to meet when he wants to be, and is happy because everything is going his way... but tell him No about something ...  and look out!  Austin had the 'bad behaviors' (that you usually hear about) that come along with Autism that Andrew lacked. He would go from zero to ten with his anger outbursts in less than a second. When he got to "that point of no return" he was REALLY hard to manage. He didn't just throw a temper-tantrum...  the threw -- anything he could get his hands on..  while screaming, and stomping, and (more times than not) banging his head on the floor or wall or whatever was in his proximity. He even lashed out physically sometimes with us..  hitting, kicking, scratching, etc. I did not know how to deal with this at the time. It was one of those cases where...  I Loved my son..  but I didn't know what to do for him. I couldn't just let him have his own way, because that wouldn't teach him anything. BUT..  when I tried to discipline him..  he lashed out. I felt (lots of times) like a bad Mom, because I didn't know how to handle him or get through to him.

I started Austin in a church Pre-school program a year earlier than I had Andrew, because I felt that he needed that exposure to other kids and the classroom experience...  and I didn't want him to 'freak-out' like Andrew did when he started real school. (Again, this is before we knew of Andrew's Autism.)  My MIL (who kept him as well) was not too pleased that I was starting him so early... and I guess because of how Andrew reacted to going, and Austin starting out the same way..  she refused to take him. So, being as stubborn as I can be sometimes...  I decided to take him myself.  I would go into work at 6:30 in the morning and then leave at 8:30 to go pick Austin up from her -- so I could get him to 'school' by 9 and then go back to work. Then I would leave work at 11:30 to pick him up by noon and take him back to her. I didn't take a normal 'lunch break' that year, and I worked until 5:30 or sometimes later everyday...  but I was determined that he was gonna have ample time to get used to this process, so that when he went to 'real' school...  it would be an easier adjustment for him.  He didn't do well when his Granny would take him, but he did fine when I took him. I would sit there with him in the class for a few minutes, until he got comfortable and went off on his own..  but he did fine for me.

His teachers, both of these years, reported that he was pretty quiet the first half of the year, but then started to open up a bit more. He showed his "temper" to each of them only a couple of times..  which I was thankful for. His 1st teacher said that she had tried to put him in time out for misbehaving and he wouldn't 'sit' for her either. She had to sit beside him with her hand on his lap for him to stay put.

I watched the "Nanny" shows religiously back then... looking for something that I could try that would hopefully get through to him...  to no avail. I was raised in a  "spare the rod, spoil the child" kind of household, but my Dad would take this a little too far most times. So, I know first hand what it means/is to be beaten. I have never 'beaten' my kids. I do believe in spanking if the offense warrants this kind of punishment, but my kids do not get spankings for everything. I will try everything that I can think of, before I resort to that. I know that some are completely against spanking, and some are for it because that is how they were raised and ...  well..  they turned out pretty well. As for us...  I am not against it, but I do use it as an absolute last resort.

I remember one day, in particular,  that I had had it up to here, (raising my hand WAY above my head), with Austin. I was at the point that I knew if I started spanking him...  it would be hard for me to stop...  he had made me THAT angry. So for his safety and my sanity, I took him and put him in his room...  he came right out..  I took him back, and this time locked the door..  he unlocked it and came out again. I took him back in there and shut the door and stood there on the outside of his room holding the door shut so he couldn't come out. I guess he was about 4 at the time. I HAD to get him away from me for a bit, so I could calm down enough to be able to deal with him. He proceeded to throw himself up against the door and the wall, all the while screaming bloody murder. I called my best friend, so she could help 'talk me down'. She heard all the commotion on her end of the phone and asked what was going on, and when I told her...  she just said...  "WOW!" She agreed that he needed to stay there until I calmed down enough to deal with him. She stayed on the phone with me until I was calm and Austin had calmed down quite a bit as well. Now, this may not have been the right thing to do...  but it was the only thing I could think of to get him safely away from me so I could calm down enough to deal with him without hurting him. I wouldn't be able to live with myself if I ever hurt one of my kids the way I was 'disciplined' growing up.

One thing I was thankful for, is that Andrew and Austin got along amazingly...  most of the time. When Austin was in one of his 'moods' he would lash out at Andrew as well. But, most of the time they played sweetly together. Andrew loved his brother...  he even taught Austin to read when Austin was 3 years old. And ..  Yes, I still read to them even then...  I still read to them today. They love it when I sit down with them and read a story to them.

Austin started Pre-K in the public schools too, and he was reading when he entered school as well. I would make 'jokingly' statements upon occasion that Austin had a little bit of ADHD, because he was just so hard to manage, and wouldn't sit still for anything but playing a game on the PS2 or computer. But I didn't really let myself believe it, because I already had one child that wasn't typical, how was I going to handle having both of my children being ... 'not typical'. I, honestly, wasn't sure I could handle it..  or even wanted to for that matter.

His Pre-K teachers and his K teachers (he had 2 each year, actually he had 3 in Pre-K because one of his teachers left mid-year and they hired someone new to replace her), they all knew something was 'up', but wouldn't tell me anything. Things were a bit easier for him and me when he was in Pre-K, but his K teachers treated him like the 'bad kid'...  he missed so much recess that year and was treated like the 'bad kid' so much... to the point he developed a hatred for school. This saddened me, greatly! He was also a very bright child, much like Andrew, but just couldn't control himself. It wasn't until Austin started 1st grade that he had a teacher that understood ....  and did what she could to make me aware of the troubles he was having. By Law, a teacher is not allowed to tell a parent that they think something is wrong with their child..  for fear of being sued.  I have never been one of those parents..  I have always told all of my kids teachers that if they think something is 'up' or 'wrong' with one of my kids..  to please make me aware, and I will do everything I can to check it out and do something about it.

His 1st grade teacher was wonderful...  she kind of told me in a way, (without actually telling me) that she thought he had ADHD. She casually mentioned one day, while I was volunteering in his class, that the previous year she had almost all ADHD kids in her room.  The following week, she casually mentioned that Austin was having some trouble staying focused on a task and getting his work completed. The week after that, after mulling it all over in my head for a week, I questioned her about her statement the week before.  I asked her, "You said that Austin was having trouble staying focused and completing assignments, how bad is it?"

"Well, not that bad...  he's getting better, I think", she replied.

"Oh, OK", I said, "Well, it sounded like you were trying to tell me that you think he may have ADHD. If this is the case, then please tell me and I will take him and get him tested. My older son already sees a psychologist for his Autism, and I know that he can test for ADHD as well. I just need to know if this is what I need to do."

"Well, I see what you are saying, and if that is what you are wanting to do, then I am ready for the paperwork." she answered with a bit of urgency.

I called and made the appointment. He was diagnosed with severe ADHD, but by 'my' responses to the paperwork..  not the teachers.  I was quite confused by this..  She had brought this to my attention and then scored him on the paperwork as if nothing was wrong. WHY????  I didn't understand. I was completely honest about what we saw at home (I even had Rich and his Mom (since she had kept him for so long) answer with me, just to make sure I wasn't the only one seeing things this way) and when questioned by the psychologist, as to what the teacher had said to me...  he said he was shocked that she answered the questions the way she did. He called her and talked with her and she was more honest about what was going on in the classroom. He made his final determination on the phone call, not the paperwork she had filled out.

By this time, I had changed Andrew's Developmental Ped. to someone much closer -- in Macon. I asked her to see Austin as well. It was almost the end of that year before we got the appointment with her, and she too, said that he definitely had a severe case of ADHD, and that he also needed OT. I knew that if I couldn't get OT for Andrew through the school system, I certainly wouldn't be able to get it for Austin. He did write much, much better than Andrew did, but he had 'other' issues with his fine motor skills..  and apparently, according to the Dev. Ped., OT can also help the brain to kind of 're-wire' somewhat, to help with certain aspects of ADHD in kids. (Don't ask me how, I still don't understand it.)

She started him on Concerta the following year. This was also the year I started home schooling them. The first month of HSing, he wasn't on anything..  I saw first hand what the teacher had dealt with the year before... to say it was hard to get him to do his work, was putting it mildly! He absolutely could NOT focus for more than about 15 minutes at a time. This, in turn, frustrated him immensely! I could see that he wanted to do it..   he just couldn't! Once he started the Concerta...  I saw a different child all together. His 'bad' behaviors almost completely went away, he was able to focus and get his work done with little to no redirection, he would even come to me and say "when can we start school, Mom?"...  he was a completely different child. BUT.... this medicine was an appetite suppressant... and suppressed his appetite to the point that he would not eat at all while on it. He also walked around like a zombie when not engaged in doing school work, he didn't smile much, didn't seem happy and just had no motivation for play or anything really.

This started our journey on the medication roller-coaster. I will discuss that more in another post. I have already posted about it on FB...  but will copy and re-post here for those that haven't read it.

Austin has always had a very witty sense of humor..  very quick on the comebacks when he is being teased (lovingly, that is), this part of him went away with the meds. I never wanted to change his personality...  I just wanted a calmer, more focused little boy that could get through his school work with ease and be able to control himself before he reached that "point of no return" with his meltdowns.

I will discuss more in the next post.....

Andrew & Public School - Part II

So, we had a formal diagnosis from a Developmental Pediatrician. She had told us that he would need OT and PT and help for his difficulties with social situations. He was already getting Speech through the school. I had quit my job and would spend the next 4 years researching school law to try to get them to agree to give him OT and PT. I also, during this time, was looking for places that I could get these therapies for him privately. The school kept denying him. His K teacher would say everything was fine in the meetings and then privately would tell me, "He has GOT to socialize, He has just GOT to socialize!"

I would respond with, "Well, he has GOT to be taught to do this, so why don't you get off the bench and help him to do this if it is so important to you!"

At home, during this time, I would help him with this..  I scheduled play dates for him a few times a week, that I would also attend so that I could help him to navigate the 'making friends' and 'socializing' rules. I took him to Birthday parties, which he would meltdown at... (he would fall to the floor and curl up in fetal position and not budge) -- we would have to physically pick him up, with him frozen in fetal position, and bring him into the party...  find a quiet room where he could sit until his senses caught up to him and he was able to come out and try to enjoy himself. Sometimes he did ok and sometimes we would have to leave. My philosophy was, and has been, that I wasn't going to hide him away or let Andrew hide himself away...  we would try something and if after a bit he still wasn't comfortable and wanted to leave, we would leave..  but we needed to at least try. It also helped that I met a lot of amazing people along our journey that also had a child on the spectrum and found out that they actually get along a lot better --  it is like they just have an unspoken understanding of each other and they don't judge each other..  they just enjoyed each others company and differences.

I also found during this time a wonderful psychologist that worked with kids on the spectrum. He started a group therapy for them and we would meet once a week. The kids would get together and learn appropriate social behaviors, learn how to 'meet' someone, learn how to share and take turns, etc. I would sit and talk with the other moms of the group while the kids were 'playing/learning' and we all got a lot of great ideas and support from each other. The psychologist also did some more extensive testing on Andrew -- some that his Dev. Ped. didn't do, so that he would know better how to help Andrew. He also agreed that there was no way Andrew didn't have Asperger's Autism.

Andrew had a wonderful teacher during his 1st grade year. She took time with him and worked with him and taught him how to write. She sent 'homework' with him to practice at night with correct hand grip of the pencil and how to form the letters. He worked hard that year at learning 'how' to write. It took almost all year, but he did it. He still couldn't write well, but he was finally trying and learning. We were finally able to get some help from the school with his sensory issues and even got them placed in his IEP, like:  due to Andrew's sensitive hearing, he would be forewarned of any and all bells/alarm drills (even if it was supposed to be a surprise one) so that he could place ear plugs (that we sent with him) in his ears; when the lunchroom got too loud for him, he was allowed to leave and eat at a table out in the 'main common area' or eat in the library; he wasn't forced to participate in activities that required him to put his hands in or even touch things that were gooey or slimy (I did, however, tell his teacher to 'try' to get him to do it, but not to force the issue). I was still trying to fight 'the system' and get him OT because even though he was now writing, he still wasn't writing very well. Annnddd... they kept denying it, because he 'could' write, even if it was not well.

His first grade teacher came to me one day and told me that Andrew was now playing in the mix of the kids and doing better socializing, that he was not isolating himself on the other side of the playground anymore. So I went to the school on a 'surprise visit' one day (which I did several times a month to check on things -- I also volunteered at the school a couple of times a week) to check him out on the playground. Andrew had learned to manipulate the situation...  he would climb the monkey bars to the very top and stay there the entire 45 mins. they were at recess. Yes, he 'was' in the mix of the kids now, but NO..  he still was not socializing or playing with them. Kids with Autism are great manipulators, because they have to be in order to function and cope.

His second grade teacher was nice as well -- but wasn't quite as helpful as his first grade teacher. About mid-way through the year, she came to me and told me that Andrew needed to write better because she couldn't read his writing very well and that I needed to teach him this at home. (Now, keep in mind that I was still trying to get OT for him through the school system for this reason.) I told her that he needed OT, and she could help with that in these meetings. She said again that I needed to do it at home. I told her NO, because it was her job to teach him and that is why I sent him to school was for them to teach him these things. (Now, I was helping him at home, but in order to get help from the school system, I 'had' to do things this way.) She was not too happy with me..  but isn't that 'why' we send our kids to school ..  to learn Reading, Writing and Arithmetic???

Andrew did start to socialize a bit more this year..  the Social Group Therapy he was attending after school was finally starting to pay off. He made a friend or two and would play with them a bit out on the playground. He spent the night away from home for the first time this year with his 'best friend' and did very well. I still hadn't been successful in finding appropriate OT or PT privately for him, and when I did find someone, his insurance would come back and say that it was the school's responsibility to provide this for him. It was also this year that the school started trying to minimize the only service that they did give him -- Speech. They tried to take it back from the 1 hour (2 - 30 min. sessions/week) to one 30 min. session -- pulled out of the class and one 30. min. session in the class setting. I was able to fight that and he got to keep the full hour being pulled out of class.

His 3rd grade year, however, they did take away 1/2 of his ST. His 3rd grade teacher was nice as well, and I was able to get more accomplished with her by doing things privately with her instead of it all being so formal in the meetings. I learned that it is not usually the teacher that isn't wanting to help, it is the fact that their hands are tied with the school board and the administration of that particular school. Any time I came to a meeting with a concern or problem, the board members and the principal would fight me tooth & nail, but if I took my concerns to the teacher directly, she was more willing to help in the private setting..  with what she could. Now, as far as therapies and other issues that the teacher herself couldn't do, like adding things to his IEP..  I had to deal with the board for these matters. His 3rd grade teacher did her 'homework' on Andrew before the school year started. Ever since he got formally diagnosed, I kept an updated form (that I typed up) of things 'All about Andrew'. Things he was good at, things he wasn't good at, ways to help him with socializing and with meltdowns, things that interested him, things to worry about and things to not worry about, etc. She read this and called me for more clarification on some things, she also told me that she had read several books about Asperger's Autism over the summer to give her some ideas of how to handle and teach Andrew effectively.

I also found out that teachers don't always know that a child has 'special circumstances' or an IEP unless the parent makes them aware of it.

At the end of his 3rd grade year, we had our normal 'end-of-the-year' IEP meeting. It was at this meeting that I was told that they were taking Speech away from Andrew because "he had met all of his goals". I disagreed, and told them that I wasn't seeing at home what they were 'supposedly' seeing in the classroom. They responded with, "Well, as long as we see it in the classroom, then that is all that matters. We cannot control what he knows outside of school."

WHAT??????????????????????  REALLY??????????????????????? That is the stupidest thing I have ever been told!

"So, you are telling me that as long as he can do math or read in the classroom, that it doesn't matter whether he can transfer that knowledge to real life situations outside of school?", I asked.

They all looked at me with a kind of smirk-ish grin on their faces, and just sat there.

I continued, "Well, I say that he has NOT met all of his goals and I am demanding that you keep him in Speech!"

The principal then told me that they would take me to Due Process Court and fight me on it. I told them to do whatever they felt was necessary, and in the mean time I would have him privately tested.

I said, "If the private therapist comes back and says that he has met all of his goals, then I will sign your paper to pull him out; but if she says that he needs to remain in speech..  then you will have to continue his services."

That summer I had him privately tested. (I also had Austin tested, he has had a lisp all his life and I knew he needed speech to correct it -- I also fought for him for Speech and the school kept denying him, saying that his was developmental). When the reports came back, the therapist told me that Andrew hadn't even met half the goals the school claimed he had. She also said that he needed speech for at least another year to year and a half. She continued to say that Austin's lisp quit being developmental when he was 5 years old (he was 7 at the time).

So, I took the paperwork back up to the school at the beginning of Andrew's 4th grade year and Austin's 2nd grade year and handed it to them in our lovely little meeting, that I STILL had NOT come to look forward to. (I would rather have all of my teeth pulled out while giving birth to Andrew again with NO anesthesia than deal with these people in these meetings!) I handed them the papers and told them what ST said..  that Andrew needed to remain in speech for at least another year and Austin needed speech for at least 6 months to correct his lisp. They didn't even look at the papers -- the principal just slid them back to me and said, "We are telling you, Mrs. Marks, that we are pulling Andrew out of Speech and Austin will NEVER receive Speech in the Ho. Co. School System, and there is nothing you can do about it!"

I was dumbfounded! I took my papers back and went home to mull over the events of that meeting and plan my next strategy of how to get what my kids needed. I was so tired and exhausted by this point, of continually trying to fight these people and getting nowhere..  I was stressed out and had horrible, violent feelings towards the administration and the BOE... I knew that this wasn't healthy -- for me or for them!

I talked things over with Richard when he got home that night...  and we decided that if the school wasn't going to help then we would take him privately. After all, his insurance would pay for private speech with a denial from the school.  So I started taking them both to private speech once a week for an hour. However, the only appt. I could get for them was during the school day. After about the 3rd week of me pulling them out of school for private ST, the principal and the LEA from the school board approached me and said, "If you keep doing this, we will have you arrested for Truency."

I responded with, "You can't have me arrested for Truency, because these are Dr. visits and I bring you a note every week!"

"We can have you arrested, because these people aren't technically Drs., they are Therapists and even if we decide not to have you arrested, we will fail your kids for missing too much school." they said.

My kids were straight A students...  and the school board had just told me that they would fail my kids who make A's all year because I am taking them to Speech?!?!?!  Really?!?!?!  I honestly didn't know what to say to that...  I was speechless.  I am being threatened of going to jail or having my kids held back because I am taking them to NEEDED Speech appts. that the school should have provided to begin with.

Rich and I talked things over that night when he got home from work and decided that THIS was "the straw that broke the camel's back" -- so to speak.  I just couldn't do it anymore. I was SO stressed, angry, upset, and confused that a school system could do this and be this way to a child that needs help. We decided to pull them both out and start home schooling them. They only spent about the first month of school in the public school system before we (both) went up there to sign them out for the last time. The administration seemed confused that we were withdrawing them...  they said something else to me that I thought was just pure stupidity ..  they told me that it would be hard, because I would have to keep up with their attendance and that was a real chore.  When I got the paperwork from the Board Office the next day and saw how extensive it was to log their attendance..  I had to laugh..  I put a check mark in a box people..  Yeah, that's REAL hard!  ..  LOL!

After I got them home and started teaching them myself, I soon realized that Andrew wasn't learning like he should have been doing in the Public School system either. He couldn't do long multiplication or long division. So I had to back him up and reteach him these things before we could move on with the curriculum. It took about 3 weeks for him to learn it and then he got caught up pretty quickly.

I also found places to take him for OT and PT..  now that we were no longer in the PS system..  I could get his insurance to pay for these therapies. So Andrew was now getting ST, PT, and OT as well as still going to his social group every week, and Austin was getting the ST that he needed; and I didn't have to clear it with anyone -- nor did I get threatened with being taken to court or being arrested or having my kids held back for taking them to therapies that they needed.

Life was now on the up swing and we couldn't be happier. I found out a few weeks later (from Andrew & his psychologist) that he was having trouble with the changing of classes anyway. Yes, the fourth grade classes here start 'changing classes' (twice a day) here. He would have 3 different teachers for his academic classes and then the ones for P.E., Music, and Art as well. It was just too much for him.

This has been our journey with Andrew, so far, and we have now been home schooling for two years and we LOVE IT!!! I am not as stressed out, and I can do whatever I want to with my kids and don't have to answer to anyone! I can make sure they both get what they need to thrive and excel in their lives without anyone telling me no. I am happier, my kids are happier and we are happier as a family! We have found some amazing people in a home school group here and have participated in a co-op and several field trips with them.

Next up -- our journey with Austin...  yes, we had difficulties with the school dealing with our youngest as well (aside from the speech issue).

Andrew's and Public School - Part I

OK -- so now we are up to the public schooling years..  but, before I start into that..  there is one more thing I want to mention that I remembered after the last post of Andrew's early years...  When he was still in his baby phase, and drinking from the bottle, he would study the pictures on the bottle. I have never seen this in any other infant I have ever been around - EVER. The whole time he was drinking and even after he was done..  he would look intently at the pictures on his bottle. He would turn the bottle from time to time to see the rest of the pictures.  I thought this was a little odd..  but not in a bad kind of way..  in an amazed kind of way. ;-)

OK--  so now onto his years in the public school system.


Andrew did get accepted into the Pre-K program in the public school system in our county (Thanks Goodness!). We got the "home visit" from his teacher a few weeks before school started. She was a nice lady and I thought she would be good for Andrew in his first year of school. I explained to her, as much as I could, about Andrew during that visit -- she took her notes and gave him a few little "tests" of her own. When I told her that he could read.. of course she didn't believe me, so she tested him..  she had a few books in her "bag of tricks" that she had brought with her, so she pulled one out and handed it to him. It was one of those "Dick and Jane" type books..  you know the type...  "See Spot run. See Jane run. See Dick run.". He read it with no problem. She was impressed, but I guess she wanted to see just how much he could read because she took another book from her bag and handed it to him. This book was much harder. It had bigger words in it and it had quite a few compound words. It also had more of a "story" to it. He read this one with no problem as well. She was completely impressed after this. I told her what his Pre-school teacher had said about having him tested for his IQ in the public school system, and she said that while they normally don't test kids this young for something like that, to give her some time to get to know Andrew in the class setting and we would go from there. That was fine with me.

The first day of school came..  and since I was the one taking him and picking him up everyday, I got to see first hand what my MIL dealt with the previous year. For the first several weeks Andrew would refuse to even walk into the classroom..  I would have to force him. Imagine for a minute, trying to put a cat into a bathtub full of water..  Yep..  this pretty much explains Andrew's reaction to being forced into this chaotic room full of unpredictable, loud kids. I thought he was just being difficult, so I forced him anyway. It broke my heart to force him..  but I did it, because he HAD to go to school ...  right??? He did everything to try to keep from being forced into that room..  he stood outside he door, he ran from me, he grabbed onto the door jam, he screamed and cried... but I made him go in there anyway.  I felt really bad for him, but I was helping him by doing this ..  right???  After a few weeks, he did better about going in the room by himself. I was relieved..  because with him fighting me, I left the school crying everyday for having to force him into a situation he wasn't comfortable with.

His teacher would report to me quite often throughout that year that Andrew had difficulties with several things. He wouldn't write or even try to write his name or even color for that matter. He couldn't use scissors. When they had fun activities, like spraying shaving cream on the tables for them to draw and write their names in..  Andrew would refuse to participate. He would stand on the sidelines and watch the other children, but he wouldn't put his hands in it. If she took his hands and put them in there anyway..  he completely freaked out. During group time..  Andrew stayed as far away from the "group" as he could get without leaving the room. When out on the playground..  he would stay as far away from all the kids as possible. He would look at them and watch them ..  but wouldn't engage in "play" with them at all.

At some point during the year, his teacher started letting him read to the class and I believe that this helped him to feel more confident and included. He really enjoyed this part of the day. Towards the end of the year, he had managed to make a couple of friends..  but the "play" had to be on his terms or he would disengage.

I kept asking her, throughout the course of the year, to test him..  because while he had all these problems, he was still way ahead of his class with reading and math. She finally agreed towards the end of the year to submit the paperwork to try to get him tested, but wanted me to understand that to justify this kind of test, they had to "come up with something wrong with him". The things they "came up with" I agreed to, because they were accurate. She wanted him tested for Speech..  because while he was using more words and actually "trying" to communicate, he was actually talking in circles. What I mean by this is..  Andrew would start a thought, stop in the middle of that thought, start another thought, stop in the middle, start another thought, stop in the middle..  then finish the first thought, then finish the last thought, then finish the middle thought. She also wanted him tested for Occupational Therapy because of his difficulties with Fine Motor Skills (writing, cutting, etc.). It took til the end of the year before they agreed to test him..  but they did agree that they would give him a full Psychological Evaluation with IQ test over the summer.

During the school year Andrew was referred for a Speech Evaluation -- on the Articulation Screener - his performance was typical to those of peers his age. He was also given the Expressive One-Word Picture Vocabulary Test (EOWPVT) and the Preschool Language Scale-3 (PLS-3) which were used to assess his language skills. On the EOWPVT, his performance was invalid. A basal of 8 consecutive correct responses was not established. His performance on the PLS-3 revealed a standard score of 78 and an age equivalent of 4 years, 2 months which indicated mild delays when compared to his chronological age of 5 years, 7 months. Andrew's strengths were understanding descriptive , time & quantity concepts, adding and subtracting numbers to 5, using prepositions and pronouns, and answering "when" questions. His weaknesses were identifying pictures, repeating sentences, defining words, naming animals, answering questions logically, describing procedures, using regular and irregular past tense verbs, indicating body parts such as wrist, ankle, and heel, building sentences, using comparative/superlatives and retelling stories.

Andrew was asked various questions on the test and his responses were as follows:

SLP: "Why do we brush our teeth?"  
Andrew demonstrated brushing his teeth and said, "A brush to get toothpaste"
SLP:  "Why do you wear shoes?"
Andrew:  " Because I got new spiderman ones."
SLP:  "Why do you put ice in your drink?"
Andrew:  "Kool-aid, tea, and Dr. Pepper."
SLP:  "What is a banana?"
Andrew:  "an apple and grapes"
SLP:  "What is a piano?"
Andrew:  "a guitar and a xylophone"


That summer we were called in for 2 separate sessions of the Psychological Evaluation with the BOE. In addition to the Speech Eval. and the OT Eval.,  he had already had previously in the school year; these are the tests they administered during the course of the evaluation:  Standardized Procedures: Stanford Binet Intelligence Scales -5th Edition (SB5), Kaufman Survey of Early Academic & Language Skills, Bracken Basic Concept Scale - Revised, Developmental Test of Visual Motor Integration (VMI), Diagnostic Achievement Battery - 3rd Edition (DAB-3),Woodcock-Johnson-III - Tests of Achievement-Form B, and Gilliam Asperger's Disorder Scale; Informal Procedures: Play-Based Assessment, Parent-Child Interaction, Teacher Observations.

On the evaluation itself..  it states, and I quote, that "On this preschool developmental assessment, any findings must be considered preliminary and baseline. These results should be interpreted in terms of developmental progress, and relative strengths and weaknesses, rather than absolute levels of functioning."

We had the meeting to go over everything at the beginning of his Kindergarten year. They did go over all of the tests and scores with me, (to be quite honest -- I didn't really understand most of it at the time), and what they said was that basically he scored genius levels in Reading and Math, but scored low with Social abilities and Verbal abilities. The LEA in the meeting kept telling me that she had never seen a child this young that was this intelligent.  They went on to say that (and I quote) "We did a preliminary test for Asperger's Disorder, which he scored borderline on." I asked what that was (because I had never heard of it before). Their response to me was "Well, if there is going to be something wrong with your child, trust me, you want it to be this!"

Wrong?  Something is Wrong?? With MY child??

They said something was wrong, and I am the type of person/mom that ...  well, if there is something wrong..  Let's fix it! How do we fix it?!  So I questioned them again...  I said, " You stated that you only gave him a preliminary test for this ...  Asperger's ...  Right???"

"Well, Yes ma'am..  that's right!" they said.

"Oh!..  OK, well then do I need to take him and have him fully tested for this then?", I asked.

Their response to me was...  "OH! NO!!!!  (while shaking their heads vigorously at the same time) WHAT EVER YOU DO ...  DON'T DO THAT!!!" 

"Let's just take a wait and see approach for now....." they continued.

This confused me quite a bit...  at first they made it sound just serious enough to make me question it, then they said that there was something wrong, and now they are telling me to do nothing about it...   hmmmmph... I don't think so Tim...

I went home that night and looked up Asperger's Disorder on the internet, and what I found shocked me, to say the least!  From what I read..  there is no way, in MY mind, that you can be borderline for something like this. It's AUTISM... High-functioning Autism, but Autism none-the-less.

So the next day, I call Andrew's pediatrician..  I spoke directly to him and told him what had happened and what was said at the meeting the day before -- he agreed with me that you can't be borderline for something like this -- you either have it --  or you don't!  He made us an appointment for the next day.

We went in the next day with paperwork from the school in hand..  I filled out several forms and tests for the doctor..  he looked over all of it and said that he felt confident that Andrew DID in fact have Asperger's Disorder, but to be safe and thorough for the school, and because they may not accept HIS diagnosis (with him just being a general ped.) -- he would send us to a Developmental Pediatrician in Augusta, whose specialty was these types of disorders. It took about 6 months to get the appointment with her -- but that was a lot quicker than waiting a year and a half to get in at Emory.

I took the preliminary diagnosis from Andrew's ped. to the school the next day (as he instructed me to do) with a note from him that we would be seen, in 6 months, by the Developmental Ped. in Augusta. And....  Heeerrree'sssss  where my troubles began!  They were NOT happy that I had gone and done exactly what they had told me NOT TO DO!

Up until now...  I was working..  I had a good job -- I worked in Defense Contracting with one of the many contractors for the military base here in our town. I LOVED my job...  I was GOOD at my job (I had been doing this same thing for about 14 years) and I made pretty good money, too. I didn't make GREAT money..  but I made good money.  Rich also worked with one of these contractors. We worked in the same building out on the base -- but with different contracting companies. Together we made a good living. We had a nice little house, in a great neighborhood, and the school that Andrew attended (and Austin would later attend) was supposed to be one of the best in the county. HA! I beg to differ!

Six months later ... Andrew was formally diagnosed with Asperger's Autism. His Dev. Ped. called it this. She said that the reason she refers to it as Autism instead of a Disorder, is because IT IS, in fact, AUTISM..  and to call it a Disorder diminishes it as such and gives school systems cause to label it something other than what it actually is. We would find this out as well.  She said that there is NO WAY Andrew doesn't have Asperger's..  He fit ALL the criteria..  He had ALL the signs/symptoms..  although more than half were on the mild side..  he had them ALL..  therefore he was considered as being moderately affected...  not mild, or severe..  but moderate. She explained to us that all of the signs of it had been there all along from the time he was still a baby..  (from his rigid eating habits, his lack of sleeping, his sensory issues, lack of social awareness, and trouble with social interactions)... and that she doesn't know how it didn't get noticed before now. She also congratulated us..  saying that we were doing the right things for him all along, even though we didn't know about his Autism yet. Well, with the exception of forcing him into the classroom thing..  that we could have done better..  but who knew???

Over the next few years..  he would have his +'s (pluses) added..  His formal diagnosis is Asperger's Autism with...  Hyperlexia (reading and doing math at an earlier than normal age), Sensory Integration Disorder, Sleep Disorder, Hypotonia (weak muscles/muscle tone), and Tibia Torsion.

The tibia torsion, we would later find out... after seeing a pediatric orthopedic doc ..  was really a problem starting at Andrew's hips. His hip bones were turning in, causing his tibia bones to also turn in, causing him to walk extremely pigeon-toed..  ALL caused by his Hypotonia, which was directly related to his Autism. So, Autism doesn't just affect the brain..  it also affects the muscles and bones, and physical well-being in some children.

OK--  so back to after the formal diagnosis..  According to his Dev. Ped., he needed services from the school that would include more than just Speech..  although this was a great start. Her initial words to us were...  "Yep, He's definitely got it! Here's your formal, written diagnosis for the school..  Good Luck!  Let me know if you need anything and I will see you again in 6 months."

What??????!!!!!!!  What do I do now????  Where do I start???  What's next???  What do I ask for from the school??? She told us nothing more. I went into a kind of panic mode/tail-spin...  I was on one-hand devastated with the diagnosis, I was also relieved  that we finally knew why he was so different, I was still in a state of denial at times, but also trying to gain some kind of acceptance of it, and I was trying to figure out what I needed to do for him now and how to get the school to agree to help him. I called all the agencies I could think of ...  Parent-to-Parent of Georgia, Georgia Autism Association, and a few others that I can't remember right now. I got told everything bad by these people that you can think of. I was told that we would be raising him for the rest of our lives, that Andrew would never be able to live on his own. I was told that I shouldn't expect for my marriage to work out, because 90% (or something like that) of all marriages of families that have a disabled child in the household end in divorce. I was told that I would probably lose everything I owned and life as I knew it was over.  Nice, huh?!?! Needless to say, I wasn't given much hope. BUT...  I am stubborn, and none of this was acceptable for me or Andrew! I made up my mind that I would do whatever it took to help him to grow and mature and to one day be able to live on his own and have his own life. This is, after all, the goal we all have for our children ..  is it not?!  I was also told that to get anything accomplished with the school, I needed to be the "bitch-mom"! This, I could handle! After all, they already thought of me as "the bitch-mom" because I went over their heads and got him formally diagnosed.

It was at our next visit with his Dev. Ped. that she finally told us -- (after we told her some of the problems that he was having at the school) -- that he needed OT and PT and help with his social skills. She handed us a prescription for OT and PT for the school... and tried to push medications on us for Andrew (which I refused). I felt confident that he could learn appropriate social behaviors and how to manage his meltdowns, although I knew that it would take a lot of work and patience from his family.

I took the formal diagnosis back to the school the next day, and asked for a meeting to begin this process of getting him the services he needed to help him. This began a long roller coaster ride of meeting after meeting, the school board trying to intimidate me with having 15 or more people in these meetings with just me and/or my husband there, the school board trying their best to have him labeled with EBD (Emotional Behavior Disorder) instead of Autism as his main diagnosis, them lying to me out-right about what it says/means in the law books for NCLB (No Child Left Behind) and IDEA (Individuals with Disabilities Education Act), them twisting my words or out-and-out fabricating what I actually said with what sounded better "for them" in the meeting notes, his teachers saying one thing to me in private, but something totally different in the meetings, etc.

The last 3 months I worked..  which was in his Kindergarten year...  I don't think I worked a full 40 hours in a given week. I was to busy being called to the school for meetings..  or there would be one scheduled..  I would ask for the time off from work, be on my way to the meeting and get a phone call (in route) that the meeting was cancelled and would have to be rescheduled because one of the people that was scheduled to be there was having surgery. Really??  You didn't know this ahead of time, and couldn't call me ..  I don't know..  like, YESTERDAY, to tell me this?!?!?! This WAS a scheduled surgery after all (yes, I found out), so they knew well in advance that this person wouldn't be there. But did they call ahead of time???  NO!!!  They waited until they KNEW I had taken off of work and was on my way before they "remembered" to call me and tell me. (My boss was really GREAT! She understood and told me if I needed to go..  to go and take care of my son..  not to worry about my job. As I said before..  I was really good at my job, and even though I may not have worked a full 40 hours in a week..  I ALWAYS got my work done for a full 40 and then some.) This was the kind of crap they pulled...  to try to intimidate parents to shut them up and not ask for/fight for what their kids actually need that the school didn't want to provide.

Now I know what you are thinking...  "The school systems don't have the money" ..  well, that is what they said to me too..  however, I would learn that when a child is formally diagnosed with a disability and is placed on and IEP (Individual Education Plan) (which Andrew had), the school gets EXTRA money for these kids depending on their disability and what they need. There is also a way that parents can find out "how much extra" the school is getting for their particular child.  They were getting more than $5,000.00 EXTRA just for my Andrew..  and all he was receiving from them was Speech???  Really???  They didn't have the money to give him OT, but they had the money for a new basketball court, and they had the money to fence in the whole school yard, and they had the money for new playground equipment for the older kids...  but they couldn't find the money in their budget to give my child the services he needed to continue to thrive in school. This amount was just what they were receiving for my child..  One parent I talked to found out that the school was getting over $14,000.00 EXTRA for her child..  now granted her child was in an actual Special Ed Class, and Andrew was in General Ed., but again...  the only services her child received otherwise, was Speech ...  WHAT?????  REALLY????  There is something majorly wrong with this picture!

I ended up quitting my job towards the end of Andrew's K year, because I just couldn't do it all! Between working full time and taking care of Richard and the boys after work..  there just didn't leave much time for me to do the research I needed to do to be an effective advocate for my son. We couldn't afford to hire someone to help, even with us both working, and besides I knew that Andrew would need "other" therapies that the school wasn't providing, and I also needed to research and find out where I could take him for these.  I also knew that my insurance (through my work) wouldn't cover the costs of these therapies that he needed, and I knew that with me not working ..  we would qualify for the state insurance -- which would cover the costs of these therapies. I knew that whether I quit my job or decided to continue working and pay for the therapies out of pocket..  we would probably lose the house; also if I continued to work, how would I get him to the therapies? I am only one person, and Richard said that I was better with dealing with these people and these issues than he was, so it was decided that I would be the main one dealing with all of this....  school, insurance, Dr. appts., therapies... and stuff. So it was decided, by both of us, that I would quit my job and take care of our family full time. I also felt really bad, because I knew that I needed to be there working, but I also needed to be there for my son..  I didn't feel like I was giving them 100% because I couldn't be there all day everyday,  and I knew that I wasn't giving my son 100% because I was just too tired at the end of the day. I was completely and utterly stressed out and felt like I was about to have a nervous breakdown if I didn't let go of something... I discussed this with my boss and turned in my resignation..  she told me that she felt like I was making the right decision. She knew that I really needed to focus more on my son and she said that when I was ready..  she would hire me back in a heartbeat. She even gave me a raise my last week of work..  It was my yearly evaluation.

So, I quit, and I kept plugging on, trying my best to fight the school to get for Andrew what he needed to thrive, and THEY kept fight me and telling me no.  I was finally able to get them to put his formal diagnosis on his IEP with the help of my Dad. He was a retired Investigator for OPM, and he investigated things like worker's comp and EDUCATION, so he knew a little bit about this. AND LET ME TELL YOU..  when he walked in to that first meeting and gave his credentials...  they sat up and listened..  they were scared! I was thrilled! They started treating me with a little bit more respect after this..  not a lot, but a little bit. Hey, it was a start anyway, after all they had already put me through.

Ok--  so again, this is a lot of information.. and this will have to be in parts..  so I will end here for now and continue on with the rest at a later time.

Andrew's Early Years... Part II

Andrew has displayed certain Sensory Processing issues from very early on, although we didn't know that is what it was until he was diagnosed. 

As a tiny baby..  whenever we went to any store (my main one has always been Wal-Mart) ..  he would want to nurse...  even if I had just fed him before leaving the house. Now, thinking about it, I believe it was that the lights and/or sounds made him uncomfortable and being "hidden" under the blanket I used while nursing him in public places gave him some sort of relief from that. 

Of course, his eating habits are also part of this. We still don't know if it is taste, smell, color, texture, or a combination of some or all of these that is the issue with his rigid eating habits.

He never did like to be swaddled in his blanket. He did, however, LOVE to be held! He pretty much wouldn't let us put him down. I could feed him, change him, rock him to sleep and then place him in his crib and...  he would wake up immediately -- screaming -- EVERY TIME! He slept in our bed until he was about 4 years old, because that is the only way we could get him to sleep through the night or at least stay in bed all night. He never did sleep through the night -- not really.  Although, as long as he was in our bed with us, when he did wake up, he would just sit there or lay there and play until he got ready to go back to sleep. 


He has always had very sensitive hearing. Loud noises, certain tunes from certain songs, bells, alarms, and the like have always been difficult for Andrew to tolerate.


He has always had a heightened sense of smell, as well. He still does smell everything before he puts it in his mouth; even if it is something that he has had before.


Andrew didn't start talking until he was about 3 years old..  and even then, I would later learn, it wasn't really talking..  it was rote speech. He started out mimicking words or lines he would hear off of one of his favorite Disney movies or video games. Sometimes this would "fit" to the question being asked, and sometimes it wouldn't. Most of the time, if Andrew wanted something he would come and grab your hand and take you where he wanted you. If it happened to be a drink or something in the refrigerator or pantry he would bang on it with his open hand until you opened it.  Then you would have to go through everything in there until you found what he was after. He would make a little grunting sound and nod once when you got to what it was he wanted. 


He had trouble understanding verbal commands. I would also learn later that he had some Auditory Processing Difficulties. I remember when he was about 2 years old, he came to me and grabbed my hand and led me to the fridge. He then banged on it until I opened it, and we went through several things until I got to the Apple Juice and he grunted. I asked him to go get his sippy cup (it happened to be under the kitchen table - where he had put it). He just continued to look at me and pat the juice bottle. So I pointed to his sippy cup and said again, "Andrew, go get Mommy your sippy cup."


He looked where I pointed, looked back up at me and then began to pat the juice container again. I walked him over in front of the table and pointed again at his sippy cup sitting under it and said, " Andrew, get Mommy your sippy cup there under the table, and I will pour you some juice."


He again looked where I pointed and then looked back up at me and patted the juice bottle. So I then crawled under the table, lifted his cup up and told him again to get me his cup. I put the cup back down where it was and then got out from under the table and asked him again to hand me his cup. He crawled under there, picked up his cup and handed it to me so I could pour him some juice. This was the way Andrew had to learn how to follow verbal commands, because of his Auditory Processing Difficulties. 

When he began asking for things by name, even those came out oddly. When he wanted chocolate milk, it came out "chipmunk". His bottle, was affectionately referred to as "bot". I was "ma" and his dad was "da". Keep in mind he was between 2 and 3 years old at this time. According to the literature, he should have been saying these words clearly by now. 


He has always been a very literal child too; with almost everything. He drank white milk out of the bottle just fine; but when I took his bottle away..  he would refuse to drink white milk at all. He would drink chocolate milk out of the sippy cup, but when I took the sippy cup away..  he quit drinking chocolate milk. 


Andrew was afraid of change and people that he didn't know. My Mom lived, at this time, in Kentucky with her then husband. She would come to visit a few times a year because her parents, two of her girls and all of her grand babies were here. Whenever she would try to hold Andrew, he would just scream and reach for me or his Dad. She was quite upset by this, because she didn't understand why he wouldn't let her hold him. When she would hold any of her other grand children..  they were fine with it, but Andrew screamed bloody murder and cried those big crocodile tears. I was upset by it too, I felt like she blamed me, but I had no clue either - why he reacted this way to her. It wasn't just her though. One of my Aunts came to visit one day and when she walked in the house, Andrew ran to the back of the house and hid. He wouldn't come out -- I actually can't remember if he ever came out while she was there. He was fine with me and his Dad, of course. He was also fine with Rich's parents. Richard's Mom kept Andrew during the day while we were working. He was also fine with our best friends at that time, because we spent tons of time with them and their baby daughter.  Everyone else...  it was hit and miss.


His third Christmas (he was about 27 months old at the time) we were so excited for him because Santa had left him Buzz Lightyear and Woody "dolls" and this was his FAVORITE movie at the time. We couldn't wait for him to see them. When he woke up that morning and we took him out to see the "loot" that Santa had left..  it terrified him...  he ran to the back of the house and it took us about an hour before we could coax him back out to see everything. He finally came back out -- grabbed Buzz and Woody and then ran to the back of the house again. We were dumbfounded.  It took several hours that day to get him to "look" at everything. 


I used to read to the boys every night before bed, actually, I read to them a lot those first several years. While I was reading, I would point to the words as I said them, and I tried to read with as much expression as I could muster. When Andrew was about three years old, I heard him playing in his bedroom one day...  he was talking to himself..  so I went in to investigate. HE WAS READING A BOOK! I couldn't believe it! So, I let him finish that one, and then handed him another one...  he read that one too!  I was completely floored! I called his Dad and his Granny (Rich's Mom) and told them about what had just happened..  they didn't believe me. Richard found out that night when he got home from work (I only worked part time back then). It took a little while longer for Andrew to open up to his Granny and read for her, but then she was amazed too! Andrew had taught himself to read. 


He would bring me pencils or pens sometimes (starting at around the age of 2 - 2 1/2) and want me to write the Alphabet for him as he said the letters..  so I did that with him quite often. He also loved numbers and wanted me to write the numbers and then that progressed into what we called "The Math Game", which was simple adding and subtracting. BUT..  He was getting it and he loved it! So by the time Andrew was 3 years old he had started using more words (even if it was just rote speech), he was reading and doing simple math. His Dad and I were completely amazed! I tried to get him to write the letters/numbers himself and he would refuse. He never did have an interest in coloring or writing on his own, even though I did try hard to get him to do it.


Because Andrew's birthday came late, he couldn't start Pre-K in the public school when he turned 4 years old. I KNEW that I had to prepare him a little bit for the classroom experience BEFORE we just threw him into all day school with strangers. So, I signed him up for a little 3 year old preschool class at one of the local churches here in town. It was 3 days a week from 9 a.m. -12 noon. The first few weeks, my mother-in-law reported to me that it was hard to leave him there, because he was screaming and crying uncontrollably. She took him and picked him up because I was working. After a few weeks..  he got better about being left there, he liked being around the kids, but he didn't really interact with them much and he wouldn't do the work that the teacher wanted him to do. When she asked him to color -- at first he refused, then he would draw one line across the paper and turn it in, then he would just scribble on the page and hand it to her. During group activities, his teacher would tell me that Andrew would go over to the book shelf and pick up a book and start looking at it. I explained to her that he was actually reading it and she didn't believe me...  until she witnessed it herself. She then told me that when Andrew got into public school I needed to PUSH to have him tested for his IQ, because in all her years of teaching this age group..  she had never seen a child this young that could read like that. 


Potty-training -- OMGosh...  THAT was a nightmare! Andrew FINALLY started going "pee-pee" in the potty RIGHT before he started the Church Preschool, but he still had accidents. When we started trying to potty train him at around the age of 2..  he just wasn't interested, or wasn't getting it..  I really don't know which. It was at this time that he started holding his bowels. If he had a diaper on..  he went..  no problem..  if it was a pull-up or underwear..  he held it. We even bought him a cool little potty that made race car noises when he went pee in it...  he would pee just enough to hear the racing noises and then quit and go "finish" somewhere else. Thank God we had a carpet cleaner! He FINALLY started going poo in the potty when he was about 8 years old. By this time we knew why he was holding it..  it was due to his Autism.


Andrew has always had a really great memory... I have trouble sometimes remembering the events of the day before..  but Andrew..  I don't think that there is much that he forgets! By the time he was 3 years old..  he could tell you every driver on the Nascar circuit - which no. car they drove, who sponsored it, which races each driver had won and when for the previous few years. This blew me away! He even knew the layout of each of the racetracks that they raced at every year. He would place his Nascar cars in a specific formation (of one of the track) in different areas around our house. Occasionally, he would go and swap spots of some of the cars. 


He was also obsessed with street signs...  the STOP sign was his favorite. At 2 1/2 years old, he would spell it and say it repeatedly--  S-T-O-P stop, S-T-O-P stop, he said this over and over.


This should, I hope, give you a good idea of what our life was like pre-diagnosis. We knew he was different, but that he was very smart and loved to learn. But we enjoyed watching him grow and learn everyday, and when he finally figured something out..  you could see a light go on in the way he reacted! 

Next up-- Public School Pre-K....

Andrew's Early Years... Part I

Some of these things will be a bit difficult to remember; Andrew is 11 1/2 years old now, after all.  I  am sure that more and more will come to me as I go. I just hope it doesn't seem like I am writing in circles. I ask that you please be patient with me during this process. 

Please keep in mind that we didn't know that Andrew had Asperger's Autism until he was 5 years old, and I WAS a first time Mom after all. Also, I was raised with two sisters, so I had NO clue about boys or what was normal or not. Whenever I took him to the doctor for his regular checkups, and I raised a concern about something, they would ALWAYS reply with...  "Don't worry, Mrs. Marks. He is a boy, and boys ALWAYS mature slower than girls." This was part of the problem as to why we didn't know anything before we did.

Andrew was born exactly one month early. He was actually due on October 16th, however, he made his appearance on September 16th. The first things I remember thinking, upon seeing our little bundle of joy - baby boy, was how incredibly beautiful he was, and how could something THAT beautiful come from and belong to us. Now, I am sure that this is a typical response coming from most Mom's about their children..  but I was completely awe struck and overwhelmed! I was also completely exhausted..  LOL!

I remember Richard telling me, probably a few weeks after Andrew was born, that he got really worried about me that night because I didn't ask for Andrew right away. Richard said that he was afraid I would be one of those Moms that would have trouble connecting with her baby. I was so tired and relieved that "the birthing of him" was finally over -- I guess I just needed a minute to catch my breath. It didn't take long, just a minute or two, before I asked to see and hold our son. Richard said that he felt MUCH better once I asked for him. :-)

I also remember checking him out, like all Moms do to their newborns..  10 fingers, 10 toes, a head full of dark brown hair, cute little button nose, squishable-chubby cheeks, ... then I looked as his ears.  OH, they were so adorable..  still all curled up, almost like a new born kitten's would be.  As they started to open, it kind of reminded me of the movie Dumbo, which was one of my all-time favorite Disney movies from my childhood. As they slowly opened...  I, again, was in awe...  He was just so darn cute... and he was all OURS! 

Most people that I have talked with, that have a child or children with Autism, tell me that they saw a regression in milestones from their children, usually around 18 months to 2 years, and 9 times out of 10, after their child had just gotten a round of shots. Now, I am not discounting what they say by any means...  however, our story is quite different. My personal beliefs about the shot theory is that...  if the shots truly CAUSED Autism..  then all children who got shots would have Autism. I DO believe, however, that the shots can bring it out in those children who are predisposed to having it already, and shots can definitely make things worse. In Andrew's case, I don't believe that the shots had anything to do with it. Once he was diagnosed, I remember thinking back -- and realizing that Andrew displayed traits from very early on. He never had a regression. It was just simply a case of --  Andrew developed his milestones quite later than most.

I am also a firm believer in a Mother's Intuition... I remember asking Richard one day, (rather telling him), that I felt something was wrong with Andrew. Andrew was only (maybe) a couple of months old at the time. I didn't feel like it was life threatening, just something wasn't right, and I was worried about it.

Richard tried to console me. He hugged me tight and said, "Nothing is wrong. He is perfect in every way. You are just a nervous, first time Mom because of how hard it was to get him here. Don't worry, he is just fine!"

It did console me a bit, although I did still worry a little. For the most part, I was able to put those fears out of my head and just enjoy watching him grow and learn.

According to all the literature out there about when a baby should reach whichever milestone...  Andrew was late with all of them..  but one. He was late smiling sociably, sitting up, holding his own bottle, grasping, etc. He NEVER did crawl. He would put his hands down on the floor and push up with his feet and "stand" in a tent position quite often. He pulled up on things and traveled and he did walk early. He was walking by 11 months. And then running....  EVERYWHERE! He LOVED his Saucer (for those that don't know what this is..  it is like a walker, but stationary. It had toys all around the tray part of it and the seat would spin 360 degrees). He would sit in that thing for hours...  just spinning and spinning .... and spinning.

When he got old enough to "play" with toys..  he would spin those too. If we handed him a rattle..  he would spin it. If we handed him a car.. he would flip it over and spin the tires. His favorite thing at our house was the cat's food bowl. He would go in the kitchen, dump out the food and spin the bowl on the floor. He clearly didn't play with toys in the traditional way.

He was also hard to feed..  even back then. Oh, I TRIED to give him different things..  I tried every vegetable, every kind of baby cereal, I even pureed food that Rich and I were eating and tried to give him that...  he wouldn't have any of it! I would put a spoonful in his mouth and every last bit got spit out every time, if he didn't gag on it first. The only thing that I could get him to eat as a baby was Oatmeal Baby Cereal with fruit and, either formula or breast milk (when I was still nursing him) mixed in it. THAT WAS IT, until he started on regular foods. He LOVED Cheerios and most other cereals that we would give him (that were safe, of course). From the time he was around 18 months until he was 5 or 6 ...  This was his diet: Cereal (with no milk), grilled cheese sandwiches, spaghetti, chicken noodle soup, Ramen noodles (hard or cooked) chicken flavor only, apples, cinnamon waffles, bacon, chicken nuggets & french fries. This diet was by his choosing...  I still tried to get him to eat other foods, he just wouldn't.

When Andrew was about 2 1/2 or 3 years old..  I asked his pediatrician about his odd eating habits. The doctor told me that a child that age wouldn't starve themselves, and if I wanted him to eat better then I needed to NOT give him anything (his preferred foods) except what I wanted him to have (vegetables). The doctor assured me that he would eventually eat when he became hungry enough, but that it may take a few days, so I should be patient and call after 2 days to let him know how it was going. I was to make sure he had plenty to drink during this process, so that he wouldn't dehydrate.

I went home, told Richard what the doctor had said, and we began this process. Two days later, Andrew hadn't eaten anything... I called the Dr. He said it was OK...  Andrew was just a little more stubborn than most, but to keep going. He assured me again that Andrew wouldn't starve himself and would eventually eat what I put on his plate. I was, again, to call back in 2 days. Two more days gone..  and still no change. Meanwhile, Andrew would go to the refrigerator and bang on it repeatedly..  wanting his preferred foods..  which I had to refuse him if this was going to work...  right?!?!?  So, I call the Dr. again...  AGAIN...  he said to keep going... he WILL eventually eat...  You are doing Great, he said (I felt miserable!)..  but this WAS Dr.'s orders..  so we kept going.  Long story short..  after 2 weeks of my child "not starving himself" (and Yes, this is meant sarcastically!)..  I went against Dr.'s orders and FED my child what he wanted...  He ate NON-STOP for 3 days straight! I WAS starving my child, under a Dr.'s care...  I felt HORRIBLE ..  All I could do was cry!

I tried again when Andrew was a little older, I think he was about 4, to get him to eat some veggies. I made him to eat a green bean..  the result..  He threw up ALL OVER the kitchen..  I vowed at that moment that I would not fight with him about food ANYMORE! As long as he was growing and healthy..  I wasn't going to worry so much about what he ate..  as long as he ate something. 

Ok..  so I am going to end here for now I think...  it is, after all, a lot of information already. I am not quite through with his early years..  so we will call this Part I..  I will (hopefully) finish up with his early years in Part II. Then we will delve into the Public school years.... Thanks for listening!

The VERY Beginning...

I can't remember a time when I haven't dreamed about one day getting married and then being a Mom. I thought it would be just that easy...  you get married..  and then have babies. It never crossed my mind that it might not be THAT easy, until I found out first hand. The getting married part was fairly easy..  but having kids..  well..  here is what happened with that...

My husband, Richard, and I had been married for almost 5 years, bought our first home together, had decent jobs and decided that it was "the right time" to start a family. So, I made an appointment with my OBGYN, to get checked out and make sure everything was A-O-K to start this process.  He gave the go-ahead and handed me a prescription for prenatal vitamins..  and so, we began "trying". 

Well, it took two years, several months of ovulation kits/sex on demand, and 2 losses. I miscarried the first fairly early, but not before calling everyone that we loved and telling them the good news. That is a hard phone call to make...  to tell someone that you have lost the baby. The second was ectopic and had to be surgically removed. The doc had said that my tube was hours from bursting when they cut me open. I was 6 weeks pregnant at the time and didn't know it, until I had that SHARP PAIN the day before and went to the doc to see about it. The fortunate thing is..  the pain had gone away and I called and tried to cancel the appointment, but my Dr. wouldn't let me. He insisted I come in anyway, because I was trying to conceive. Good thing for me I went! 

After this loss, I became very depressed. Richard and I decided that we would just STOP it all...  no more ovulation kits, no more sex on demand, no more "trying"..  if it happened ..  it happened. I also decided that it really didn't matter to me if "I" had the baby..  the bottom line was..  I WANTED/NEEDED to be a Mom and I didn't care "how" it happened as long as it happened! I started calling different adoption agencies. Richard got pretty upset with me about this. He said that we were still young and it was not time to give up hope yet of having our "own" baby. He was right!

The very next month...  I missed my cycle. I had been instructed by my doc after the ectopic that when i was one week late I should come in and be checked out. So, I called and made the appointment. I went in and it was confirmed through a blood test that I was INDEED pregnant! He then did an ultrasound on me ...  but didn't see anything in my uterus. Things were not looking good...  again....   but, he sent me home and told me to come back in one week if I had not miscarried by then.  One week later and there it was...  attached...  but on the wrong side...  but still in my uterus, where it should be. HOWEVER...  there was no heartbeat... so things still didn't look good. He sent me home again -- come back in a week. One week later...  and there was a STRONG heartbeat! Andrew was on his way.

I was considered high risk the whole pregnancy, and had ultrasounds almost every time I went into the Drs. office..  but things were progressing nicely. Even then..  Andrew had his "own" way and timing for things. If you noticed in the paragraph above, I mentioned that he was on the "wrong side"...  well, according to my Dr..  when a woman conceives and the egg drops down from the tube..  it is supposed to attach on THAT side...  Andrew decided he would float around for a while and attach on the opposite side from which he was actually conceived. I went into labor with him 6 weeks early, and they put me on Breathene (sp?) (which gave me the shakes) and bed rest for a week. Immediately when I finished taking the meds....  I went into labor again. The Dr. tried to stop it again, but was unsuccessful. He stopped my dilating, but couldn't stop the contractions..  so he had to restart me and  let me have him. Andrew was a difficult baby to birth..  not only because he was my first..  but because every contraction I had..  instead of him moving down in to the birth canal..  he moved further UP into my rib cage.  He was also sunny side up instead of face down...  The nurses had to help me to get him to flip the right way...  21 hours of labor, 2 1/2 hours of pushing, and the use of the vacuum and nurses pushing down on my belly and Andrew was finally here..  4 1/2 weeks early..  weighing in at 6 lbs 12 oz. My Dr. told me that if I had carried him to term..  he would have been a 10 lb-er. He was perfectly healthy and got to go home with me. Although, we did have to return a week later because he had jaundice. Three more days in the hospital under the lights and he was good to go!

Austin was much, much easier.  When we decided to try for our second child ..  almost 2 years later..  I had prepared myself that it may take a while and that it may not be viable the first time out.  Within two months..  Austin was on his way!  I was still considered high risk with him because of all the trouble I had getting Andrew here, but my pregnancy with Austin was much smoother.  I was diagnosed with gestational diabetes with Austin and had to be on a special diet while pregnant with him, but otherwise a normal pregnancy...  until I went into labor with him 6 weeks early. Again, the doc put me on Breathene and bed rest for a week...  I carried Austin an extra week after that and then went into labor with him again. Again, the Dr. tried to stop it, but this time he stopped my contractions but could not stop me dilating...  so he had to restart me and let me have him.  Nineteen 1/2 hours of labor and Three pushes ...  out popped Austin - screaming and peeing. The doc did stop me from pushing after the head was out for a few minutes..  in his words "don't even breathe" but after a few minutes he told me to resume pushing. I thought it was a little odd for him to say that, but didn't question it at the time. I found out later that he had been born with the cord around his neck...  but he, too, was healthy and got to go home on time. Austin weighed in at 7 lbs 2 oz at 3 1/2 weeks early. He, too, would have been 10 lbs if I had carried him to term..  according to my Dr.

Next post..  Andrew ... the Early Years....

The Reason for this Blog and some Background Info...

I have been told by a few close friends and family members that I should start a blog to enlighten people on what it is like raising my boys. You see, my boys are not what most would call "typical" they are in fact, so far "Out of THAT Box" that most just do not understand. My oldest, Andrew, has Asperger's Autism +. He was diagnosed with this when he was 5 years old. My youngest, Austin, has ADHD +, and he was diagnosed when he was 6. I added the + (plus) sign behind each because, if you have ever really known someone with Autism or ADHD, then you know that these different abilities come along with, sometimes, numerous "other" sub-categories. I describe their conditions as "different abilities" because the other words that are used to describe these conditions are just way too negative for my taste. I have not ever thought of either one of my kids as being "disabled" they are simply differently-abled.

I hope that by writing this blog, it enlightens others that normally wouldn't know anything about these conditions, so that they may understand and hopefully be a bit more accepting of those that view the world in a much different way than is the norm. I also hope that this blog may help someone else that, maybe, is just starting out on this journey with a child and needs to know they are not alone. This is also for those, like myself, who have had a diagnoses for quite sometime..  but maybe needs some fresh ideas of ways to help their child or loved one.

It is important to remember that just because you have met one child with Autism..  you have only met ONE child with Autism.  Every one of them has different likes, dislikes, things they are good at and things they struggle with. They all have different sensory issues and a different view of "their world" that they have created for themselves. It is up to us to find a way to join them in "their world" so that we may be able to help them better function in ours.

I have been told by these friends of mine, who are encouraging me to do this, that I should start at the very beginning, so people can get a full understanding of how our journey has unfolded and how we ended up where we are today. I hope each person that reads this takes something positive from it. I don't claim to be an expert on Autism or ADHD..  I am however an expert when it comes to my children and their needs. But even though I know my children well and what their needs are..  I still need help upon occasion. Constructive criticism, encouraging comments and helpful ideas are welcomed...  mean, hateful or rude comments ARE NOT and will be deleted! I don't always do things right the first time out, but then none of us do when it comes to our kids. However, I keep trying until I find something that DOES work. I hope you enjoy my blog!