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Saturday, July 21, 2012

Friendship and Special Needs Families

Are you the parent of special needs children? Or the friend of someone who has special needs kids? I'm not sure what is harder. Walking the tightrope of parenting special needs children or trying to be a friend to someone who has kids with special needs.  I'm not sure friendship with me isn't more difficult.

Parenting special needs children poses it's own special problems. Each child is unique and has their own issues. I was fortunate that my children had mild intellectual disabilities, PDD-NOS, and some mild physical disability issues like low tone and coordination problems. But my friends had no experience with 'the special needs' of being a friend to a mother of special needs kids. I guess we were both thrown in the deep end of the pool, and none of us knew how to swim!

What makes us different? Are we different? Yes, I'm afraid we are. You see we tend to be high maintenance friends. We are always battling for some new class or over some new issue for our kids, but at the same time we are totally exhausted by the battle. Sometimes this means we have to put our kids ahead of our friendships. (No matter how much we regret this!)  And sometimes the battle leaves little time for our friendships. This is one of the reasons so many moms of special needs kids tend to 'hang out' together. We all know what is happening, we all know the exhaustion of special needs parenting. And many of us suffer from the same problem, we'd rather do it ourselves than ask for help. We don't trust easily.

Am I a good friend? I hope so. But I have a really hard time asking for help. Offering it? Sure, I'm front and center. Accepting it? Harder for me. I don't mean the kind of  'can you pick up some milk for me when you're at the store' kind of help, I mean help when it really counts. Sometimes I think maybe it's part of not wanting to relinquish control. I feel like that 60s advertisement for Excedrin that said "Mother please, I'D RATHER DO IT MYSELF!" I really would rather do it myself. I know I'm reliable. And I don't want to take the chance someone else might not be.

Sometimes I think it's important for me to 'do it myself' because in so many areas of my children's lives I can't do it all myself. (Not that I don't try, I'm a chronic overachiever!) So asking for help is hard. Accepting it harder yet.

Maybe it's because so much help is 'forced on me' as a special ed parent. There are days I really just want to say 'enough is enough.' Days when after five days of special preschool, followed by private PT/OT and speech that I just wanted to say 'NO MORE!' Let my kid be the kid she is, not the one you want to create. Is this so wrong? Today I am glad I accepted the help and took them to PT/OT/etc. but it was one exhausting ritual! Exhausting for them and for me. And to an extent it robbed them of some of their childhood. And it robbed me of some friendships. Because no matter how much I wanted to 'do it all' something always suffered--my poor friends!

One thing I was always aware of is every family has children who may have special  needs.  Just not special needs as defined by law. While my kids struggled with low tone and intellectual disabilities, some of their kids had bullying issues, others had kids with drug or alcohol abuse problems or other issues, others had eating issues. In many ways my daughters' disabilities were easier to deal with, they had a whole network of people set up to help them. While some of my friends had kids with problems that were harder to work with and through.

What advice can I offer to other moms of special needs kids? Or to the friends of those moms? Patience. Understanding. And if your friendship is meant to last, it will. One or both of you will go the extra mile to make sure it does. Because eventually all of us need to recognize our children will grow up and move on with their lives. Don't sacrifice friendships, they're too valuable to us all. And your children wouldn't want you to sacrifice friendships.

To my friends I say "Thank you all." Thanks for understanding (most of the time) or trying to (the rest of the time.) To my children I say "You're worth it all. Every second." So I'll try to be a better friend. And if I'm not, call me on it. I really am trying!


  1. I enjoyed this Nancy. For our family, having friends in our worlds--specifically cancer and parents of preemies--has been invaluable. Knowing other mothers who know what an IEP is or who understand that weekly PT/OT and constant exercising and vigilance is not a walk in the park; well, that is a god send. The friends who don't get it fade away. Those who do--whether they live it or support is through it--they are golden.

  2. Thanks for sharing. These insights are important for.teachers to understand as well.

  3. Hope it helps someone, anyone give a better understanding. And I hope it helps people nurture their friendships, even at times when it's hard to do and you'd like to just say 'the heck with her/him!' it's too much work, they're too high maintenance.

  4. Good thought Mary Ellen. Thanks for reading and commenting.