How Much Is Enough?

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.

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About Brotherly Love

I am a mom, partner, teacher and a lover of life. I have two fabulous boys who define my life as I know it. One of my children has been diagnosed with a sensory processing disorder, Asperger's and anxiety disorder. I blog as much about him as I do about my life and the lives of my immediate family.
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7 Responses to How Much Is Enough?

  1. akbutler says:

    amen 🙂
    in a perfect world, there would be help for everyone without needing to label, without pitting once child’s service against another.

  2. What a tough situation! One thing I did with Miss D. that really helped was contact her teacher immediately, letting s/he know about her issue (ADHD) and what potential difficulties might arise/set her off. I also asked them to please keep me informed about how things were going and gave assurance that I’d do anything possible to help foster a happy school experience. As a former teacher myself, I always appreciated knowing any and all that I could about my students–never hurts to start with a full deck, right?

  3. Elastamom says:

    Perfectly put, Heather. It’s not fair for anyone to judge anyone else. Every child is an individual and has individual needs. Hang in there!!

  4. Debbi Henry says:

    Heather,
    I know it is easier said than done, but try not to let the words and judgements of others bother you. In my opinion, sensory issues can be more challenging than other issues because they are hard to figure out and take so much time and energy. The meltdowns alone and exhausting!

    I agree with The Kitchen Witch about the school issues. I would talk to the teacher before school starts and let her know about his sensory needs. Any info that you can give her should be helpful.

    I have had so many problems with Gracie’s school regarding her sensory issues. They are convinced that she has behavior problems and not sensory/communication issues. Maybe if you can set the tone regarding his needs then that might be easier. I was niave and thought that the school would see Gracie’s issues as I did and have been shocked by the way that they perceive Gracie.

    Good luck and keep us posted on how school is going for him!!

    • Thanks Debbi, Kitch and everyone else! We are planning to talk to the teacher at a before school conference next week. I have a bunch of info from his preschool teacher to pass along as well. I’m going into this as positively as I can. Hopefully it will transfer to the teacher and it will be a great year for all of us:)

  5. Kristine says:

    I’m still perplexed by the refusal to give him an IEP because he’s too smart. Gahhhh I would definitely revisit the IEP issue in a couple months if you think he isn’t learning as he should. If the SPD is inhibiting him from learning he deserves an IEP. Was he tested by the school district?

    I get everything else you are saying though. I don’t want my son being seen as the bad kid either. Sadly the older he gets the less understanding people are with his behaviors and they just think he is a brat.

    • Kristine –
      He was evaluated by the schools last fall. It was a mess and I regret some of the decisions I made but it’s done now. As we move forward we will be watching things very closely and I will NOT hesitate to revisit the IEP issue as well as other things that have been overlooked in the past. Thanks for the suggestions!

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