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Thoughts from a Special Needs Mom

Sigh…..I like Barak Obama. I really do. I voted for him. I applaud what he stands for. Change. Something this country desperately needs. But I am deeply offended by his joke on Special Olympics on Jay Leno last week. I know that other people found it funny. The majority of them don’t have a special needs child. Maybe if they did, they would understand.

 

 

I think I am even more sensitive to his “joke” than I would be normally because we are facing some very tough decisions in our family with regards to Cam. I attended his IEP last week. It did not go well. I left very discouraged and disheartened by what I was told. Obviously I know how far behind Cam is with regards to his peers. I’m not in denial of the depths of his disabilities. Quite the opposite, in fact. However, I went into this IEP with the expectations that the team would be re-evaluating some of his goals and maybe increasing his time in resource. Unfortunately that is not what happened. I was ambushed.

 

 

The team wanted to discuss transferring Cam to a more “specialized” classroom. What they really meant was taking him out of mainstream and sending him to the self contained classroom. They say he cannot function in a normal classroom setting right now. He is a distraction for the other children, he tries to take naps, he flat out refuses to follow directions, he hunts and steals food….the list of complaints went on and on. My heart was hurt to hear them dissect a little boy who has come so far in his life. They cannot even imagine how far he has come. I have no way to make them understand what a miracle it is that he is even alive. They focused on all the things that he cannot do, which admittedly is a lot of things, instead of praising the things that he can do.

 

 

They dropped the bombshell that no parent wants to hear. In our state, once Cam turns 7 years old, we can no longer use developmentally delayed as a reason for services. His label automatically morphs into “mentally retarded”. I was appalled. I think my mouth actually hit the table in astonishment that we have come so far in the world of genetics and early diagnosis’ and yet educators still use a label as inflammatory and derogatory as “mentally retarded”. I have drilled into my children that “retarded” is not a word that we use. Not ever. Not in any context. Period. And yet, the school system finds it perfectly acceptable to slap a “retarded” label on my kid. Rest assured, the entire IEP team has very clear understanding of my stance on the use of that term. They also seem to grasp the consequences if I see one piece of paperwork come home with that word on it. At least I hope they do. I wasn’t exactly subtle.

 

 

Which leads us to the difficult decisions that Matt and I are faced with right now. I cannot, in good conscience, allow Cam to attend school in a self contained classroom. I just cannot do it. My parents have offered to allow Cam to come stay with them. There is a fabulous private school less than 20 minutes away from them that is specifically for special needs children. Sounds great. We should jump on it, right? There are a few obstacles that are making our decision difficult. My parents don’t live in our city, they live a little less than 2 hours away. Cam would have to stay with them during the school year and come home on breaks and for the summer. The school is also incredibly expensive. It would make our finances extremely tight to pay the tuition. I know that money should not be the determining factor but is it fair to deny the other kids the opportunity to do afterschool activities and sports and extracurricular things?

 

 

On one hand, in my heart, I know that this would be the very best thing for Cam. He would thrive with my parents. In all honesty,as I have said before, his interests would have been better served had CPS bothered to look for an adoptive home with no other children. He requires a lot of care, and he requires a high level of constant monitoring. On the other hand, it feels like we’re just shipping him off to get rid of him. Which is absolutely not true.

 

 

My heart is heavy and my head is swimming right now. We’re discussing options and trying to figure out a way to make it all work. How will the other kids feel? What are the legal ramifications? And there’s a little bit of fear that this won’t help and we’ll be right back in this situation again next year.

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