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Our dear friend and writer here at 5 Minutes for Special Needs, Anissa Mayhew, recently suffered a stroke. We are praying and sending our love to Anissa, her three children, husband and family.



March 2, 2009

Acceptance

That's what's been on my mind these past couple of days.

This weekend, my husband and I went to a ceremony honoring teen volunteers for a Sunday morning program Max attends. It's for kids with special needs, and it's really amazing—Dave drops Max off at 9:30, and picks him up at 12. They sing, make art projects, play basketball and even cook or bake something. 

Anyway, at the start of the ceremony they had a slideshow of the kids in the program. As I watched kids with various disabilities flash onto the big screen, Max included, I suddenly thought:

I wish I weren't here.

It's what often happens when I'm around a bunch of kids with special needs. At home, Max is just Max. But when I see him in a community of kids with disabilities, like that night or when I take off work and go to Max's school, it gets to me. I have a hard time accepting that he really is part of that community. It's when it hits me, hard, that I have a kid with special needs.

I don't know when I will fully accept it. On some level, I have—literally from the time Max was a month old, he has gotten some form of therapy. We do everything we can to enable him, encourage him and just make him a happy, content kid. That is a part of our life, something we do without a second thought. But clearly, on an emotional level, I am still in some sort of denial. 

This kind of stuff never gets to my husband. He wasn't sitting there getting all emotional and wrought that night. Just me.

Does this happen to you?

 

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Comments on Acceptance »

March 2, 2009

Torina @ 12:38 pm

When we first adopted my daughter when she was 11 (now almost 14), I felt like that a lot. Like I got plopped into this foreign world in which I did not belong. The ironic part is, we KNEW that we wanted to adopt a kid with special needs but it was still incredibly hard to see so many kids who were struggling with disabilities all at once. I can't even imagine how much harder it would be to be surprised with a kid who has special needs because I still feel like I get the wind knocked out of me at times.

Fortunately, and unfortunately, the feeling did go away after a while. Now, I crave those days when we are surrounded by kids with disabilities and families who are parenting them. Those are the few people that really understand what it is like and I need that. I need them.

Lisa @ 2:15 pm

Wow, oh my! I thought I was the only mom who felt like that.
I really get sad…when I see the older kids and teens with special needs..and think..will Joey be like that? Will he be toilet trained…
just lots of what ifs…?

WG @ 4:38 pm

OH MY GOD, YES. Seriously, it was like reading my diary or something. I still think, in some crazy, deluded part of my brain, than one day we will "graduate" and all this will be behind us, a bad memory.

Dawn @ 5:50 pm

Yes, I do feel that way. My daughter is only 16 months old, so I guess I am new at this, but I do have those moments. On her 1st birthday, we took her to a local farm for the day. Right before we left, we stopped to feed her at an outside table. A group of adults with special needs came to a nearby table to eat dinner. They were all wearing bibs and had varying disabilities. And my husband and I just stared for a bit. There were others walking by who stared too, but our stare was not in judgment or ridicule, we were both thinking – that could be our little girl one day. I have no doubt there will be many more times like that where it hits us right between the eyes!

Karin @ 6:05 pm

Simply, yes.

The Gang's Momma @ 7:56 pm

I know just what you are feeling. We've only been home with our Li'l Empress for 5 months and the first 4 months were really pretty focused on adjusting to being home and getting her firmly attached to us all and settled in as a member of the Gang.

Now we're starting the rounds of evals with Early Intervention, our hospital's care program for kids with hearing loss, and so on. At the orientation meeting for that care program, it suddenly hit me that I was the mom of a child with special needs. It took me a couple days to let that settle in to my spirit.

It's been an overwhelming 6 weeks to say the least, getting all these evals, bloodwork, immunizations started, plus now services and therapies going. It makes me so grateful for support from places like this site and friends who have been thru both adoption and special needs.

Maddy @ 9:03 pm

I'm not sure really. I know that my husband is much better with them in public than I am. I'm always anticipating disasters [which frequently don't materialize] and he seems oblivious, which probably makes for a better outcome.
Best wishes

Ellen S. @ 9:41 pm

Thank you so much for these replies, they're really comforting. Torina, I've had the same experience—only parents of kids with special needs really get what it's like to raise a child with special needs.

Heidi @ ggip @ 11:59 pm

I think this is a very brave post. I'm so glad you did post it especially when I read all the comments.

I guess I'm not sure where I am at, but I do know that when I see a person with differences now, I do wonder whether my son will ever be able to be as independent as them, or as dependent, whatever the case may be.

I think it might also have something to do with whether this defines my identity or not.

March 3, 2009

Awesome Mom @ 1:07 am

This is really hitting me in the face right now as my son turns five and is old enough for Kindergarten. I need to get on the ball and get him an IEP but I am rather scared to do it because I don't want him labeled. that has been the hardest part about his stroke. When he was little it was obviously physical that we had to work on but now that he is older we get to discover all the learning issues that are possible with his brain injury. I want him to grow into an independent adult so bad it hurts but I am not sure it will happen.

Marya @ 8:35 am

I understand completely. I'm never completely over it and sometimes it hits me like a 2×4. I have three kids with special needs of one kind or another and it completely takes my breath away at times.

Deborah @ 9:58 am

My children are all in their teens now, and I have moved past the uncomfortable feelings you describe. I think time is the reason – it did take me a long time, but now I see all my kids as just that – kids.

I learned not to judge or predict what unpleasant things the future could hold. Rather, I constantly focus my efforts on preparing them for the future – a future that they have a say in determining.

Parenting a child or children with disabilities, especially significant disabitities, is not for the weak of heart. But from what I have seen from everyone who has written and commented on this sight, none of you are weak. Perhaps you are still discovering your strength, but I bet one day you will look around and say, "Wow, I never knew just how strong I was."

We struggle with this a lot. I mean, A LOT. My husband moreso than me. (He's written two "guest posts" on my blog about this.) I'd like to say it's gotten better, and in some ways it has, but then there are days where it feels like we've never left the developmental pediatrician's office.

Olivia @ 9:18 pm

I can relate. I joined a club I didn't ask to belong, yet somehow when I am with the kids at Joshua's school I am also overwhelmed with a sense of hope. If their families are still kicking, so can we! :0) But I do wonder what my son will or will not do… what will he look like, will people know something is "different"… etc.

We are in the hospital again after being home for only 6 days. I love sharing my son's story and the miracle of his life, but I have days I just want "normal" again. I liked my false sense of control – however dilusional it was before our son was born!

But the Bigger part of me is so glad we have our son and he has helped me grow and learn so much. He is a blessing. Today, I need to be reminded of that blessing – God was faithful and he did remind me! He chose each of us because He thought we were the perfect fit for our children – how cool is that?

Thank you for your post! Being real and aware of your struggle. I keep a carepage for our son…www.carepages.com "JoshuaGrantOber". May God receive all the glory for my son's life!

Love, Olivia

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