As a developmental specialist, I am constantly working with parents to help their children strive for whatever they are capable of. Every child is different whether they are delayed or not. Every child has a different ceiling of possibilities. It is up to us as the big people around them to help them and push them to reach that ceiling.
Lately I have been stuck in a new world regarding children with delays or a need of some sort. I’ve heard comments – one from a very dear friend – about certain parents whose children “aren’t delayed enough or needy enough” and therefore don’t deserve specific rights.
I am not a naive parent. I recognize that my son’s needs are not nearly the needs of other children that I have met and/or heard about. I’m able to look around in the waiting room at therapy and realize how lucky I am to have the struggles that I have with him.
That being said, I wish that others wouldn’t judge me or my son. Maybe it is “just a sensory issue” that he is dealing with. What they don’t seem to realize is that the simple sensory issue they see is a big deal to him and a big deal to our family.
I have to plan for outings. I can’t spring things on him because he doesn’t do well with the unknown. We plan our entire week out in advance and hope that nothing changes drastically without the opportunity for us to warn him.
One night of staying up a little past his bedtime takes at least a week for him to recover. That makes summer incredibly difficult. He gazes longingly out of his bedroom window hearing the sounds of children all over our neighborhood as he gets ready for bed. I’d love to let him stay up to play with them. It’s just not worth the struggles that he has to try to get back to “normal”.
When he’s having a day where it’s tough for him to regulate he can drive even the most sane person crazy. He throws tantrums that can last for 30-45 minutes. He cries because he’s upset and then cries because he can’t stop crying. He spins with his arms stretched out not realizing that he’s hitting anyone near him and that he may hurt them. He talks nonstop about anything to do with Legos because it calms him. He chews on his shirts, on his Legos, on anything within his reach because he needs the input. He is unable to focus on anything that is said to him. He rhymes to try to calm himself. He talks loudly because he’s unable to regulate his voice.
My son was denied special education services at his preschool because he was “too smart for an IEP”. As we head into Kindergarten I worry for him. His intelligence is something he has used in the past to manipulate a situation to avoid the things that are difficult for him. Sometimes his methods of manipulation manifest themselves as behaviors to the naked eye. Without a plan in place for him, teachers are not forced to put on their sensory glasses and look more closely at the situation. So, he becomes the “bad” kid or the class clown and suddenly the intelligence that kept him off the IEP is gone.
I would never be the parent to say that my kid’s problems are worse than your kid’s problems. I know that the outlook for my son’s future is better than many other children’s out there. He is intelligent and will hopefully go on to college. He has the capability to live on his own and be successful. I don’t feel the need to plan for his future the way that so many parents do. His ceiling appears to be pretty high. All that I ask is that you don’t discount the struggles that he will have to get there.