Let's get real...no, really...
Let's get real here.
Special needs is still something that is talked about in hushed tones by the majority of the public. Not so much by the parents of these children, or adults. There are so many aspects of what we as parents deal with on a daily basis with our special needs family members, that a "normal" parent would run screaming into the night over. I'm not kidding.
Some parents have children that, because of their neural wiring, threaten their (parent's) lives on a daily basis. Some parents have to place their loved ones in homes, for their own safety. Not in defeat, although they may feel they have been defeated, but because they are doing what is the right thing for that child. Others live with the very thin line that they walk every day because they know they can, and must. They're the only ones who can take on what is coming because they know ( in my opinion), God has given them the strength to withstand the mountains ahead of them.
Some parents have children that have parts of their anatomy that don't work right, whether its cerebral palsy, a birth injury, an accident injury, muscular dystrophy, blindness, deafness, mute, cancer, autism...These parents have to be their children's hands, and feet, as well as their strength. Defeat isn't in their vocabulary.
Then you have the parents of Down's Syndrome children. Any number of the issues mentioned above can accompany a child with Down's...or none of the above.
My point here is this...let's get real here...parents of Special Needs kids have something that folks with normal kids lack. A special sense.
Some decades back, an article was written by Erma Bombeck titled, "The Special Mother." If you've never read it, I encourage you to do so. It hits home in so many ways.
The one thing that has always stuck out about that article is the thought that a parent of Special Needs kids never takes anything for granted. We never take for granted the muscle control that allows a child to hold their heads up, much less take that first step. That first smile, that first coo, that first word, like the Heavens have opened up and allowed you to take a peek inside, if only for a split second.
Potty training is something that, despite the obvious messes, is a time of celebration for some, because a hurdle that we were told was never going to be overcome has just been blown out of the water...so to speak.
But there's more. The wonder of seeing something through your child's eyes that you would have never taken the time to see, in this busy, me, me, me, world.
A butterfly, for instance. A thing of wonder for some children...for wunderkind, a thing of fascination. For Special Needs kids, a delight. To see the curiosity, wonder, and fascination, all rolled up into one on the face of your child, even if they'd seen it a hundred times, fills you with an immense joy.
To see a child that "experts" say would never achieve anything, much less getting dressed on their own (fashion sense aside, in some cases), and walking out into that big, scary world...taking it on and saying, "I can, and I will..." opening restaurants, designing clothing lines, walking cat-walks, acting, singing, playing instruments. They can, and they will! One of the most famous of special needs individuals, Stephen Hawkings, a physicist! Who said that special needs folks can't do what everyone else can't?
But Mom and Dad? Yeah, they're the ones in the background, breaking down the barriers that just 40 or even 30 years ago the experts said couldn't be moved. The "experts" strongly suggested children's homes for some, because the children would never do for themselves. The Parents (and Siblings, too), are the advocates, the very tired advocates. They are the mountain movers. If their child wants to design clothes, they move Heaven and Earth to make that happen. If their child wants to design quilts, they are the ones who kiss the hurt fingers that have been poked by too many straight pins. If they want to see beyond the stars, they take them to the top of the mountain.
Parents, Siblings, Grandparents, Teachers and Advocates. I know you're tired. I know you're maybe feeling a tad defeated, but think about this...you could have another physicist at your table who only eats spaghetti-os, bananas and corned beef hash. You could have another Chris Burke, the actor with Downs who played in Life Goes On. Your child who is right now scribbling on your walls could be the next Marte Wexelsen Goksoyr, an actress, playwright, writer and disability rights activist. The child doing the Gregorian chanting in the bathroom while on the toilet could be the next Laz-D, a rapper born in the U.S. with Down Syndrome, or James Durbin, an autistic contestant on American Idol in 2011. That one rolling around on the floor with the dog could be the next Temple Grandin, a professor of Animal Sciences at Colorado State University who has autism. That paper that you have on your fridge of two dots and a smear could come from the next painter of the Sistine Chapel. Michelangelo had Aspergers.
The point I'm making here is, don't give up. Your dreams of a "normal" child haven't been dismissed, or broken...they've been detoured a bit. They've been altered to fit a new dream. The dreams of your child haven't changed, they've just thrown a whammy in to see if you're paying attention...to see if you can take on the challenge that God knows you can handle. Yup...I said God. Because without Him, and the strength He gives, doing it on your own is pretty difficult. Not totally insurmountable, but pretty difficult. He is our Advocate. He is our Strength and our Shield. He will give you the strength, the ambition and the desire to scale those mountains or even move them altogether. He will give you the desire to know everything there is to know about what you are heading into, and His right hand will be there, guiding you every step of the way. You just have to remember to grab it, because the way is going to be filled with more potholes and landmines than you can ever imagine...but God. God will get you through, over, under or around each and every one of them. He will give you the wisdom you need, when you need it. The voice to speak when no one else will, or to call out those who try to sweep the special needs under the carpet. The strength to stay up, with little sleep, while your baby is sick, or cannot do for themselves, or are in the hospital, so that they know without a shadow of a doubt that you are with them. When all you have left is despair, angst, anger, defeat, you will find provision for respite, love, comfort...sometimes in His Word, sometimes through prayer, sometimes through others or programs made for children with disabilities and their families, and sometimes, through the smile of your child.
I know this rambled a bit...sort of where my brain is right now. I want to convey so much, and sometimes it gets lost in the translation from my brain to the screen. I guess what I want to tell you most of all is this: Don't give up. I know the struggle is there...it's more real than anything out there. I know the heartache of experts who mean well, or those who really don't care, who say something so hurtful that you have no choice but to prove them wrong. I know the sleepless nights, the tear-stained pillow because your dream of a life for your child is not what you expected it to be. That's okay. Its okay to feel what you feel, to be angry, sad, or even grieve, because that's what you do when something is lost...you grieve. And its' okay. I've been there and done that. Oftentimes I'm beyond tired, mentally and physically. And that's okay, too, but don't let it become a habit. Accept help when it comes. Find respite where you can. Allow yourself the time to be by yourself, but don't give up. You could have the next Prima Ballerina, Oscar-winning actor, Pulitzer Prize winner, or Nobel Prize winner snoring in that bed with rails to keep them from rolling out of it at night. Or you could have the next morning of new mercies, accompanied by Fruit Loops and cold water in a cup with powdered creamer, a lot of it, floating on top. Count it all joy. Give it to God, and let that peanut butter faced Munchkin be the glimpse of Heaven that most others will never see.
Be blessed.
Special needs is still something that is talked about in hushed tones by the majority of the public. Not so much by the parents of these children, or adults. There are so many aspects of what we as parents deal with on a daily basis with our special needs family members, that a "normal" parent would run screaming into the night over. I'm not kidding.
Some parents have children that, because of their neural wiring, threaten their (parent's) lives on a daily basis. Some parents have to place their loved ones in homes, for their own safety. Not in defeat, although they may feel they have been defeated, but because they are doing what is the right thing for that child. Others live with the very thin line that they walk every day because they know they can, and must. They're the only ones who can take on what is coming because they know ( in my opinion), God has given them the strength to withstand the mountains ahead of them.
Some parents have children that have parts of their anatomy that don't work right, whether its cerebral palsy, a birth injury, an accident injury, muscular dystrophy, blindness, deafness, mute, cancer, autism...These parents have to be their children's hands, and feet, as well as their strength. Defeat isn't in their vocabulary.
Then you have the parents of Down's Syndrome children. Any number of the issues mentioned above can accompany a child with Down's...or none of the above.
My point here is this...let's get real here...parents of Special Needs kids have something that folks with normal kids lack. A special sense.
Some decades back, an article was written by Erma Bombeck titled, "The Special Mother." If you've never read it, I encourage you to do so. It hits home in so many ways.
The one thing that has always stuck out about that article is the thought that a parent of Special Needs kids never takes anything for granted. We never take for granted the muscle control that allows a child to hold their heads up, much less take that first step. That first smile, that first coo, that first word, like the Heavens have opened up and allowed you to take a peek inside, if only for a split second.
Potty training is something that, despite the obvious messes, is a time of celebration for some, because a hurdle that we were told was never going to be overcome has just been blown out of the water...so to speak.
But there's more. The wonder of seeing something through your child's eyes that you would have never taken the time to see, in this busy, me, me, me, world.
A butterfly, for instance. A thing of wonder for some children...for wunderkind, a thing of fascination. For Special Needs kids, a delight. To see the curiosity, wonder, and fascination, all rolled up into one on the face of your child, even if they'd seen it a hundred times, fills you with an immense joy.
To see a child that "experts" say would never achieve anything, much less getting dressed on their own (fashion sense aside, in some cases), and walking out into that big, scary world...taking it on and saying, "I can, and I will..." opening restaurants, designing clothing lines, walking cat-walks, acting, singing, playing instruments. They can, and they will! One of the most famous of special needs individuals, Stephen Hawkings, a physicist! Who said that special needs folks can't do what everyone else can't?
But Mom and Dad? Yeah, they're the ones in the background, breaking down the barriers that just 40 or even 30 years ago the experts said couldn't be moved. The "experts" strongly suggested children's homes for some, because the children would never do for themselves. The Parents (and Siblings, too), are the advocates, the very tired advocates. They are the mountain movers. If their child wants to design clothes, they move Heaven and Earth to make that happen. If their child wants to design quilts, they are the ones who kiss the hurt fingers that have been poked by too many straight pins. If they want to see beyond the stars, they take them to the top of the mountain.
Parents, Siblings, Grandparents, Teachers and Advocates. I know you're tired. I know you're maybe feeling a tad defeated, but think about this...you could have another physicist at your table who only eats spaghetti-os, bananas and corned beef hash. You could have another Chris Burke, the actor with Downs who played in Life Goes On. Your child who is right now scribbling on your walls could be the next Marte Wexelsen Goksoyr, an actress, playwright, writer and disability rights activist. The child doing the Gregorian chanting in the bathroom while on the toilet could be the next Laz-D, a rapper born in the U.S. with Down Syndrome, or James Durbin, an autistic contestant on American Idol in 2011. That one rolling around on the floor with the dog could be the next Temple Grandin, a professor of Animal Sciences at Colorado State University who has autism. That paper that you have on your fridge of two dots and a smear could come from the next painter of the Sistine Chapel. Michelangelo had Aspergers.
The point I'm making here is, don't give up. Your dreams of a "normal" child haven't been dismissed, or broken...they've been detoured a bit. They've been altered to fit a new dream. The dreams of your child haven't changed, they've just thrown a whammy in to see if you're paying attention...to see if you can take on the challenge that God knows you can handle. Yup...I said God. Because without Him, and the strength He gives, doing it on your own is pretty difficult. Not totally insurmountable, but pretty difficult. He is our Advocate. He is our Strength and our Shield. He will give you the strength, the ambition and the desire to scale those mountains or even move them altogether. He will give you the desire to know everything there is to know about what you are heading into, and His right hand will be there, guiding you every step of the way. You just have to remember to grab it, because the way is going to be filled with more potholes and landmines than you can ever imagine...but God. God will get you through, over, under or around each and every one of them. He will give you the wisdom you need, when you need it. The voice to speak when no one else will, or to call out those who try to sweep the special needs under the carpet. The strength to stay up, with little sleep, while your baby is sick, or cannot do for themselves, or are in the hospital, so that they know without a shadow of a doubt that you are with them. When all you have left is despair, angst, anger, defeat, you will find provision for respite, love, comfort...sometimes in His Word, sometimes through prayer, sometimes through others or programs made for children with disabilities and their families, and sometimes, through the smile of your child.
I know this rambled a bit...sort of where my brain is right now. I want to convey so much, and sometimes it gets lost in the translation from my brain to the screen. I guess what I want to tell you most of all is this: Don't give up. I know the struggle is there...it's more real than anything out there. I know the heartache of experts who mean well, or those who really don't care, who say something so hurtful that you have no choice but to prove them wrong. I know the sleepless nights, the tear-stained pillow because your dream of a life for your child is not what you expected it to be. That's okay. Its okay to feel what you feel, to be angry, sad, or even grieve, because that's what you do when something is lost...you grieve. And its' okay. I've been there and done that. Oftentimes I'm beyond tired, mentally and physically. And that's okay, too, but don't let it become a habit. Accept help when it comes. Find respite where you can. Allow yourself the time to be by yourself, but don't give up. You could have the next Prima Ballerina, Oscar-winning actor, Pulitzer Prize winner, or Nobel Prize winner snoring in that bed with rails to keep them from rolling out of it at night. Or you could have the next morning of new mercies, accompanied by Fruit Loops and cold water in a cup with powdered creamer, a lot of it, floating on top. Count it all joy. Give it to God, and let that peanut butter faced Munchkin be the glimpse of Heaven that most others will never see.
Be blessed.
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