Micah is 6 years old, chronologically speaking. Mentally, he's not quite that. It's very hard to determine where he is mentally. His lack of speech contributes to the lack of knowing. I do know that his best friend is 3 1/2 years old and they get along incredibly well. Or at least as well as 3 year olds get along with the on again/off again fighting that constitutes a friendship at that age. Micah may be close 3 mentally, or he may not. But the fact remains that he is not 6. And I'm good with this because it's who he is.
But this is where the whole special needs/disability thing is starting to impact our lives. Micah is getting too old for things like church nursery where toddlers are welcome but older kids are not, and yet he's not old enough to fully participate in the older kids (i.e., age appropriate) class. It seems as though there is no place for him.
This is the reason that I cried for a very, very long time after Micah was diagnosed with Down syndrome. Years. I cried off and on for years. And if I'm being completely honest, I still cry. I cry because there is no place in the world for a child like mine. The world will say that they embrace those with special needs, and we all talk about inclusion, but in reality nothing has changed. There is still no place for people who are different. Nobody wants to deal with the problems that they bring with them. Problems that they cannot help because they were born with them. Problems that are just as frustrating to those who have the disability as they are to those who have to deal with the disabled.
These problems may be lack of hearing, or lack of speech, or lack of cognitive skills. These problems may be lack of mobility, or lack of sight, or lack of social skills. But no matter the disability, all the kids deal with the same problem; there is no place for them. They cannot conform to be normal, because they are born different. This is not a choice that any of them had, and yet they are singled out and set aside because their differences.
Life is most certainly not fair, and I cry for the unfairness of it. I have never cried because I have a child with a disability. I am proud of my son. Incredibly proud. I cry because he has a disability. He will forever live in a world that has no place for him, and that is just too harsh for someone who wants nothing more than to just fit in.
20 comments:
I promise you that there is a place for him. This will be my third summer at a special needs summer camp. Many of the same kids come back year after year, because it is where they belong. I want to deal with the problems. I want to deal with the child who pushes because he doesn't know how to say "be my friend". I want to deal with the child who answers my hello with "hello hello wheels on the bus". The boy that we take to the bathroom every 15 minutes, because he can't tell us when he has to go. I'm lucky enough that a little boy comes into my groups room every day and says "I'm gonna give you a hug. We're friends. That's nice". He's not a child who is easy to understand when he speaks, but I understand him perfectly by now. He's my buddy. These kids are amazing. My boys? They're the coolest kids I know. They all have their unique special needs. But I adore them. Through no fault of their own they have any number of issues.
All my kids want is to be accepted. They want friends. They want to get invited to a birthday party. Camp gives them that.
I work with one little boy who has autism and does not speak. He toe walks, and chew on his shirt. So many of my kids go out of their way to say hi to him, and to try to get a high five, or maybe a hi.
So I hope and pray that you can find a place where Micah is not just accepted, but loved and valued. Cuz let's face it, he's absurdly cute, smart, and awesome. He deserves a place. Everyone does.
So yeah, long winded. But I wanted you to know that there are people who do care. and who look forward to spending the rest of their lives working with kids with special needs.
I hope it's ok that I posted all of this. I just wanted you to know that I care. and that posts like this remind me of why I work in the special needs community. So thank you for being so honest.
Molly - You. Are. Awesome. On behalf of kids that just want to be loved, thank you. You know what you do is rare, right? Thank you for caring.
I just stumbled across your blog this evening and I am so glad that this was the very first post I read. It is so heart felt and dead on.
While I do not have a child with Down Syndrome like your son, I do have a child with special needs. Often masked because he looks normal, and even at times can fit in, I wonder where his place will be in this world. I worry about the cruelty and stigmas he will face and I know there is no way we can shield him from it.
Aww this is so true for me too. I do not think i could have done a better job then u .(cept the ages and stuff LoL). I know as a perosn with disablities fiting in works sometimes, for me they are with my family at Standford golf camp and sports. I hope mich will find his nich in something soon.
Karen...this is a wonderfully sweet post. I am glad that you are Micah's Mommy...He is a lucky boy:)
The world needs those who speak the truth, and it needs it when that truth hurts most of all. I worry about this every day, because as hard as it is to admit it, you're right. I don't know where our kids will fit one day, but I feel more and more certain that whatever place that is, it's one that they will carve out for themselves. I find it both encouraging and heartbreaking. Thanks for putting voice to that truth.
When I went to school we had a special needs class. The kids in that class didn't eat lunch with us, didn't ride on the school bus with us, and at no time were they allowed to interact with the rest of the school. Their classroom was a portable out back, while I am sure that was a result of having too little room, for the rest of the school it added to the feeling that they weren't really part of our school. Not to mention that they were lumped together because they had disabilities, not because they were learning at the same pace.
At my children's school now, there is a special education department, and an entire wing of the school dedicated to the children who go there everyday. They integrate the children in school activities, on the playground, and in the cafeteria. The teachers and aides in those classes help the rest of the children to understand that those students are different, but, not different in a bad way.
I was amazed when one day while eating lunch with my daughter, a little girl with Down Syndrome walked up to her and said hello, and my daughter waved back and then proceeded to tell me all about Shelley. The aide that introduced them explained to my daughter briefly what Down Syndrome was, how it made Shelley different, offered to answer her questions, and told my daughter that Shelley often wanted to talk to her beacuse she loves Hannah Montana too.
I guess by my long winded comment, I am trying to say that I can see change. Much of that change comes through educating our children. My daughter sees her new friend as different, but understanding why is the key. Shelley is different because she has Down Syndrome and Becca is different because she has glasses. To my daughter, it is all very simple...at least for now.
It must be really hard. I know that's the lamest and most "duh" comment ever, but I'm sure it is very difficult to watch and wonder where he'll be in 5 years? 10 years? 40 years? I do know he has wonderful brothers and a great sister who will watch out for him and try their best to help him out.
This post reminded us of the story of the plane bound to Italy...but it arrives in Holland- a beautiful place...but not the one you headed out for...and with time you appreciate the beautiful windmills and the tulips, for they are as beautiful, just different than the sites of Italy. You are a wonderful mother for sharing as well. Prayers for encouragement and blessings from your amazing son.
smiles,
kari & kijsa
Hold on... let me finish wiping my cheeks, ok?
*deep breath*
I'm back. I can sympathize with this on a different level. Bug struggles with the fallout of his struggle to control himself on a daily basis. He has very few friends, and struggles to make any new ones as he gets older because kids his age are unintenionally cruel because they have little patience and understanding of seemingly "normal" kids with hard to define differences. Mood disorders are so harsh on the child that has to learn to control them.
How do you convince a child that he's not "bad", and that there really are other kids out there who will look past the obvious to the wonderful kid that he really is?
Micah is so blessed to have been gifted with the family God gave him.
I, too, am positive that Micah has a place, perfect for him. He has a place of honor in his family, that much is certain. I do believe he is going to continue to grow and learn and reach out to others. He will find a way to communicate to people. I believe in Micah and I believe in you. Many hugs for when the weight is on your shoulders.
Good. Ness. Don't you people know that I can't handle reading these posts and comments when I'm this emotional in my pregnancy? Yet I can't not read them!
Karen, I want to change the world for Micah and every child out there, with special needs or not. I became good friends with a girl who had Down Syndrome while in elementary school. She was so excited to come to my birthday party or have lunch with me. I didn't understand why everyone else wouldn't want to be her friend, because she was so sweet and nice and fun. I still don't understand why people don't accept everyone with our myriad of differences. I wanted to change the world then, and I want to still. I want the world to be a place where everyone is excepted and there is a place for everyone.
Good luck to you, Micah and everyone else. I don't know what I specifically can do to change the world other than treat everyone how I wish to be treated and teach my children to do the same. Probably once my kids are older, I'll get back involved in Special Olympics or some other program. If you can think of any other way I can help, let me know.
Great post. Your big guy has a bright future ahead with all these great moms posting before me. Thanks for paving the way.
I have so been there. This is the first year I have sat by and watched as my daughter slowly slips through the cracks at her elementary school.
No amount of prodding or questioning is helping this year...her teacher is just not into it (she has 5 autistic children in her class...her hands are overfull).
I wonder as time goes by are her social issues going to ostracize her even further...and how am I supposed to know exactly how to handle the situation and when to sit back and let things happen naturally.
Sometimes I think it's not just about the issues of having a child with issues...but also knowing just how to parent that child that becomes the extra that you don't just quite now how to approach.
Wow, I guess you struck a cord.
No advice, but I'm so feeling you on this one.
I have cried buckets of these same tears . . .
Once we were blessed with a special sunday school class for "Jewels/God's Gems." A mom of a down's girl had a dream of a full and rich class where no one was left behind. She named it and set about making it a reality. It caught on like wildfire and rained blessings on that church and then next and the next as the dream grew.
Never have I ever been in a more wonderful place where all were welcome. My daughter chose that class over her regular class to be with her brothers and others of ALL ages. It was so special to see the older kids pushing around Andrew in his wheelchair or pointing out that Matthew needed attention when he couldn't speak for himself. The special community notices everyone and accepts them without prejudice.
The parents even began reaching out through a newsletter and social activities that the whole church attended. All from a dream one woman had -- a lemonade stand from an abundance of lemons. : D
Maybe you or someone around you has this dream of a Jewel's class growing inside. I shall pray it is so . . .
This is a very touching post. I am certain there is a place for Micah, although it may not always seem so.
My youngest daughter has Downs, and I get what you are talking about. She is 15 and a Freshman in High School, and she is what the special ed teachers call a "tweener" to advanced for life skills class and to far behind for regular classes. It can be frustrating at times, and I know they try the best they can. And it is true that about the age of 5-7 you notice more and more the "differnces" between special needs and "normal" kids.
But with all that said, I wouldn't trade my daughter, Hope, for anything in the world!!
Terriwerder@yahoo.com
Anon - Even though sometimes there is no place for my baby boy in the world, there will always be a place for him in our house. Even if I could, I wouldn't trade Micah for the "normal" child we expected to have. He is our single greatest blessing. Ever.
Well your post made me sad, Molly's comment made me cry. There need to be so many more places like this. Even for the kids that are "almost" there and try to fit in -- the t-ball teams where the coaches need training in how to maximize what their kids can do and how to best handle their disabilities, the library programs that they want to be a part of but need help with even as they get older....
You're not alone - I still have moments where I cry too.
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