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Monday, May 21, 2012

Having a Kid with Special Needs

I never used to think of myself as a Special Needs Mom.  I mean, yeah, I had a kid with a super rare genetic disorder that no one had ever heard of.  But all kids are unique in some way, with their own little quirks, right?  His biggest quirk just happened to be a little more unusual.  And more than a little challenging.


But I saw Moms, I knew Moms with kids who are really Special Needs Kids.  And I admired those Moms because what they were dealing with is truly unfathomable to me.

Sure, Peter was seeing how many different specialists the first week of his life?

Sure, he was a constant source of fascination for med students and his dermatologist couldn’t get enough pictures of him.

There was nothing special about this.  He was just a little different.

And sure, sometimes Peter will suddenly get into an uncontrollable rage.

Sure, he might start screaming at the top of his lungs and not be able to stop.

Sure, he might scratch himself until he bleeds because the feeling of his skin was simply too much to bear.

This has been a growing year for me, coming to grips with having a Special Needs Kid.

All kids are special in some way.  Yeah, yeah, I know they say that if everyone’s special then nobody is, right?



[spesh-uhl] adjective

1. of a distinct or particular kind or character.

2. being a particular one; particular, individual, or certain.

3. pertaining or peculiar to a particular person, thing, instance, etc.; distinctive; unique.

4. having a specific or particular function, purpose, etc.

5. distinguished or different from what is ordinary or usual.

Sounds to me like everyone is special.  If it makes you feel better, call us unique individuals.  

But then there are unique individuals who have needs that are distinctly outside of the norm (are you normal? I know I’m not.).  And my son is one of them.   I’ve always accepted that, but I wasn’t one to come right out and say he had Special Needs.  Maybe I was afraid of the label.  I don’t want anyone to stick my son in a box.

But the truth is, the real truth is that my family’s life is not normal.  Aspects of it are, sure, but other aspects definitely are not.

It’s not normal for it to take over an hour to get one particular 6-year-old to sleep. 

It’s not normal that we had to stop going to church as a family because one particular child might have an all-out-freak-out in the middle of Mass. 

It’s not normal that going to Walmart in the afternoon with all the kids was never happening again.  With my luck I’d end up on People of Walmart.

It’s not normal that I have to shadow my kid every second at the playground to make sure he doesn’t lose it if another kid happens to accidentally kick dirt on him or run into him.

It’s not normal that my child can overheat in 75 degree weather.  His limit for outside activities in the warm months is about an hour with a cooling vest.

Sometimes it’s really hard.  Especially when I look around at all the Moms I know in real life with normal kids (for want of a better word) and I feel like I’m looking at them from the other side of a fence.  My life is not like that.  I’m an outsider.  I don’t belong.  I’m always going to be off in a corner by myself.

I’m a weirdo.

When Peter was a wee one, the priest who baptized him asked me how he was doing.  And I said, “We are so blessed to have him.”

And we are.  Always.  He is truly a remarkable person and our family would not be complete without him. 

I thank God for bringing Peter into my life.

I love this child to pieces, but it’s still very hard to be his Mom.


  1. ((((HUGS))))

    I relate. (Differently of course, but I relate.)

    Thanks for sharing!

  2. I understand, and I empathize. (hug)

  3. Thank you for the hugs, ladies, I really do feel them. :0)

  4. He certainly is a little cutie! You are doing a great job! It sounds like such an intense job to parent him but you are doing a wonderful job! I can tell! Wishing you all the best with your sweet crew : ) Love, Becky

  5. Thank you, Becky. Sometimes I feel like an abysmal failure as a parent, but I suspect that all parents do sometimes. ;0)

  6. Praying for you, your family and your amazingly special boy!

  7. Praying for you, your family and your amazingly special boy!

  8. I too have a special needs little boy - my 27 year old son. He is one of the low functioning Downs children. We too lived through years of 'terrible two's. His speech is so unintelligible that others are frustrated trying to understand him and he gets frustrated trying to be understood. He has definitely impacted my other 4 children. At the time they were growing up, it was hard for them, but now they are incredibly empathetic caring adults because of living with him and they talk about how wonderful it was to grow up with him. So yes, these special ones are a lot of extra work but they bring out the best in us. I wouldn't change my little (27 year old) boy for anything.

    1. It's always a blessing to get a comment on an older post like this---it gives me the opportunity to see where we were at a couple of years ago and recognize how far we have come. Thank you for sharing your story---I agree that our special "little" guys are incredible gifts.


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