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Thursday, March 3, 2011

Luke's Bad Day

(Luke @ 3 years old)

I feel as though I am constantly fighting. Fighting for Luke, fighting doctor's office for reports, fighting government agencies, fighting with him to take his meds, fighting the school for them to do their part....I'm tired, so tired....and yet the fight continues. It has to continue. It doesn't stop.

Luke had a bad day yesterday. So, now I am fighting with teachers. I thought sending Luke to public school would get him the services he so desperately needed. Boy..was I wrong. I spent hours talking with school officials about my concerns. About how Luke was different, about how I was worried about him being bullied and having no friends, about his tendency to be bossy and argue. They "assured" me that they had strategies in place to help him deal with these things while they re-evaluated him. Yesterday, Luke was embarressed by his teacher in front of the whole classroom because of social skills that Luke doesn't yet have. He essentially got "in trouble" for having a giving heart. The teacher called me to tell me this and when she did I just laughed because I didn't see how it was big deal. She told me that she instructed class not to "accept" things from Luke anymore. Apparently, Luke gave away all the mechanical pencils I bought for him at Target. Big deal. When I talked to Luke about this, he told me "Mom I was so embarrassed that I couldn't even talk or look at anybody. I wanted to run away." My baby!!! I am the horrible mother that put him in this situation. Can you believe it? Because somehow I thought this was the magic class, the magic pill the magic whatever that would help him and solve all my problems. What a naive attitude right? Let's just face it...I was delusional :)

Now I have a little boy who HATES school. He cries, refuses to go out to the bus stop and even runs and hides. He cries to me "mom I have NO friends. Nobody likes me. I hate school." What is a mama to do? Here he has adhd, microcephaly, tourettes, glaucoma, sensory processing disorder, etc. and I fed him to the wolves. Mark and I have been round and round and discussing everything. What am I to do? How do I find something, some program that is a good fit for LUKE. My heart is breaking. I should be able to figure this out, but I am stumped. There is just one thing I know for sure. This can't keep going on. Something has to change, or my sweet spirited, loving little boy is going to be crushed. Help.


Rachel said...

Saying a prayer for you all! I know it is difficult, I have a sibling w/CP. God will show you the way!


Carissa said...

Thank you for your prayers. I appreciate it so very much!

Laura said...

First of all, I just want to thank you from the bottom of my heart for being such a wonderful mom to Luke. It makes me so happy that he is in a home where he is loved, and his whole being is taken care of.

Where is he going to school? Is it a learning support situation where he is mainstreamed out?

It seems to me that the teacher is maybe having problems with proper social behavior herself making an "example" of Luke in front of the class.

There are always other schools with other programs who have wonderful teachers and support staff and they WILL meet his needs.

School can be a terrible place for anyone, regardless if they have special needs or not. Luke has such a strong spirit and bright personality. I'm certain once his school situation regulates itself, he will make many friends.

Thank you for loving him enough to get him the services he needs. It's gonna be a struggle. Being a great parent of a child that has special needs requires tenacity. You're doing a great job so far.

Carissa said...

Thank you so much Laura for your encouragement. Yes, he is at BBC, and he is in a learning support situation and spends all day in general ed. The only service on his IEP is 30 minutes social group 1 time per week. He is in the middle of a re-evaluation and they are dragging their feet. I know what program I would like him in, but we will see. I know there are AWESOME teachers out there....I just have to get him to the right place. Thanks again it means so much.

andrea frazer said...

Carissa - You left a comment on my blog a while back. I wanted to check in and tell you that you need to fight for your kid! YOU know him! YOU know what he needs. Don't let some school dictate what or who your son is. You sound like you're doing a great job and I want to encourage you to keep fighting for what is best for him.

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