Advocate. Advocate. Advocate!

Tyler had his IEP in November and it do NOT go well. Especially since we didn’t bring an advocate. He was doing really well and we thought we were in a good place with the team. We had another meeting today because we had rejected portions of his IEP. Here is an update. I actually posted this on Facebook earlier.

I know a lot of you care about our little guy so I will share the update. Brief background is we asked in November at his IEP meeting, to start lengthening his day at school to prepare him for the fall when he will be a first grader and expected to be there all day. He has been going to school for only 2.5 hours a day, 5 days a week for the last 3 years. We were denied this as we were told his needs were being met in that time.

I contacted my friend Amy, who is an advocate and asked her what to do. She enlisted her advocate friend Beth and together formed a great team! Beth drafted a wonderful letter that I turned in with his rejected IEP and addressed a lot of our questions but using language that schools do not like to see like laws, and placement rights, etc.

So we met today and low and behold Tyler has a completed updated IEP that included a plan to start lengthening his time. Granted we still are not starting it now but its a plan. There are definite pros and cons to starting him now as opposed to the fall. The summer really throws this off and everyone is concerned that would confuse him. We have 2 plans that will be stated in the IEP. We will either start him off in September staying an extra hour and then build it up another hour in October and then full day by November 1st OR just put him in all day the first day of school and just have him realize this is what is expected and deal with his behaviors as they happen. We have the luxury of deciding so that is nice.

While we are satisfied with the outcome, it still pains me that families have to go through this. Just because Beth typed this letter and was there today we had a lot of questions miraculously answered. While, in November, while Tony and I were there alone, we felt completely isolated and alone and that we had no rights. Its so disheartening to know families take the team word and don’t fight for what they are entitled too. Its not fair that we as parents of special needs children have to fight. We fight every day for these kids, emotionally and physically. We shouldn’t have to fight for a fair education when that is what they are entitled too! Its not fair that things can’t be communicated entirely to the parents when an advocate isn’t present as opposed to when one is.

Therapy..therapy..therapy

Now that we were home for good, we started receiving Early Intervention Services. Given the amount of damage to his little brain he needed to be taught the basics..how to roll over, how to play on his belly, how to lift his head, as it was larger than it normally should be on an infant, so on and so on. We received weekly physical therapy, occupational therapy, speech therapy. While this may seem overwhelming to a lot of people, it was a blessing to us. These ladies came every week and took such good care of our little man. He resisted every time his physical therapy sessions rolled around, but that was only because someone was making him work. It was so nice to be shown little things that we could work on with him until the next session. And what a JOY to see the hard work pay off. I will list when he achieved his milestones in a bit. I cannot stress ENOUGH the importance of following through with the suggestions from Early Intervention gives. They are usually very simple things but in the long run mean so much for the child’s development.

Yes there were times when we would go WEEKS without having services. And that bothered me. But just like if the therapists were in a school setting, by being around so many children all the time, they were susceptible to illness. So there were weeks that one or all of them would not be available. But knowing the simple suggestions they gave us, we were able to keep up his progress and in some cases, achieved the goal they were hoping for.

Now that Tyler is in school, even though he does receive these same services there, I miss the weekly interaction. I miss having suggestions to work on. I miss having hands on experience. So while you may feel this is such an overwhelming issue, or a nuscience to have these people in and out of your house on a weekly basis, it really isn’t. Learn from them. Listen to their suggestions. In hindsight I do wish I didn’t complain about them coming because I did have my days where I just didn’t want them there even though it was good for him. I wish I could go back and take those thoughts away. There were times where I would cry and say “why can’t he be a normal little baby and not have to be forced to do these things.” All along knowing these sessions were the best things for him. Like I said, I long for those days again. So if you are having ANY of those same thoughts, hang in there. Your child isn’t the first to received the sercvices. They certainly won’t be the last.