>Break Out

>

I’ve been stewing about some things lately. You know what that means: a jumbly rambling possibly ranting post. Fair warning.

It’s just that I’m getting tired. Not physically tired, psychically tired.  Emotionally and intellectually tired.   I’m just dipping my toes into a new pool of sorts. And while we’ve lived with some of this for, oh, seven years or so….the more formal social and educational aspect of this is hitting closer to home now.

Now that I’ve thoroughly confused you, I want to say it out loud. But this term, this subject, is loaded. It is rife with taboos and thorns and unwritten rules, as well as rules written at length and all but incomprehensible. And even more, all too often, with ignorance from folks on the outside looking in (And hey, I’ll admit, that used to be me).  Yes, I’m talking about “special needs.”

Special Needs.

Yeah, such a simple little set of words.
But OH MY GOODNESS, so very loaded.
Now, I could do a post and be like the “Church Lady” and point out what we all already know:

Dana Carvey, the Church Lady

Each and every one of us is “special needs” in the sense that we are all SPECIAL, and have our own quirks and strengths and so on.
And I do believe that.

But this post is about another aspect of “special needs.”
And it’s that I am tired of the taboos.
I am tired of not being able to say things out loud, for fear of stigma.
I am tired of when I do say it, somehow voices drop to a whisper, or I get an “Oh….ahh” and a quick look away kind of response.
Or worse, a well meaning defense of my kid saying “No way, that can’t be right.”

This is all making me want to strap on my mom armor and go to battle.
I have two, possibly three, kids who have special needs. Yeah, I could say, “different needs” or something like that. But I am tired and too old to be tiptoeing through the ever shifting sands of pc (or, more accurately: ‘sc’, socially correct) verbage.  I mean they have needs that are, big or small, outside the standard box.

Disclaimer ahead: So, to be clear, in this post, I am talking about kids who don’t fit the mold of standard track education or behaviors or medical issues. Special needs comes in all different forms and levels and severity, so I cannot speak to those needs that are not ours and would not try to. I can speak to what we are working with, in our home, with my kids. Disclaimer over.

What I want to throw out there (And maybe it’s naive, and I hope the special ed/needs community doesn’t flame me): Why the taboo?
Why do we have to whisper about this stuff?
Why is there such stigma?
Why does it have to be?
Why do well meaning folks instantly say, “No, that can’t be right?” as if, if it IS accurate, then somehow that child is less than they were perceived prior to the new knowledge?
Nothing changes with this knowledge.
The child, my child, is not a different person if we know more about them and how their mind works.

Their “worth” is in no way based on how they learn or if they have glitches or if they cannot.

It’s fine tuning.

Special needs information is not an appraisal of value or rank, it’s information gathering; it is problem solving. It’s fine tuning; academic approaches, behavioral needs, medical stuff….it’s figuring out what works best for them and why.  Period.

And I want to start talking out loud about some of the issues we are working through.
And I fear I cannot online due to the possibility of hurting my child somehow, somewhere, someday.
I want to try to open up to other families who might be dealing with some of these issues to share tips and ideas.
Even here, even now, I have to hedge a bit, worry about protecting them.
But the beauty of this blog world is the connection. I have been repeatedly amazed and grateful for the prayers and the help and the advice and the simple feeling of not being alone…due to this blog community. And I suspect there might be other families that have children who have medical, educational, behavior issues that are out there.

Heck there is an alphabet jungle out there of issues, we have a small forest of them in my house. Is it wrong to want to use resources, to connect to help my kids? To help me? I don’t think so.

I hope that maybe other moms might be tired of not being able to talk about this part of their family life. I hope that other moms might be tired of their kids being slotted into a stereotype due to a possible “label” or some small bit of information. That small bit of information, that acronym, or term, is a tiny (or, sometimes, large) facet of who they really are – the wholeness of their person.

Are there any moms out there who are tired of pushing against the tide of perception?
I am.

I want to break out.
I want to talk about my kids.
I want to talk about all my kids.
I want to have conversations about special needs – without the stigma.
I want to shout: having a different approach or way of learning or brain wiring doesn’t make you less.
It’s different. Less common maybe.
It takes some brainstorming, a lot sometimes.
Don’t slot my kid, don’t presume.
They may really have that issue, and it’s a little scary.
They may not, but then they probably have another one to work on.
But that very thing (the one that’s not ‘pc’ to talk about outright), might just be one of their strengths as well, depending on how you look at it.

But, let’s break the taboo.
Let’s start saying these things out loud.

If you can’t speak of it, name it, it has so much more power, but the wrong kind.
And that breaks my heart.
But it also makes me angry because it’s wrong.
We have to advocate and be strong for these kids especially.
So I guess I’m talking. Armor on.
Because they deserve it.
Because they are beautiful.
And I’m their mom.

22 thoughts on “>Break Out

  1. >Way to go Coffeemom! I agree. Why the taboo? As a public school educator for many years, I've seen so many parents in denial, angry, defensive, etc. over the needs of their child. Wouldn't it be more beneficial to everyone to just work together, determine what works for that child, and embrace it? That being said, though, I do not have any special needs kids at my house and cannot speak from the mom side of it. I hope others who can will join the conversation!

  2. >Thank you for starting this conversation- for being bold in loving and advocating for your children. This is why you are such an inspiration.I don't have children who are special needs- at least, not right now. We thought for a while that Anna did have some developmental delays, but she has started to catch up. But my wonderful, brilliant, genius fiance fits the "special needs" category. He has a visual processing/learning disability thing. He struggles to read children's books, let alone research articles and medical textbooks. He cannot construct complete thoughts on paper because what he thinks and what he writes are two different things. His brain works in ways that I can't begin to understand, and people can have a hard time relating to him, even though he is jolly and sociable.And yet, this weakness is also his strength.This man graduated from Columbia University's Biomedical Engineering program in 3 years, when it takes most 4-5 years. He is a brilliant physician and has saved countless lives. The ABIM created a fellowship JUST FOR HIM because he had a vision and they saw such promise in him— and the work/research he is doing now is blowing these old ideas out of the water. Nations will change because of his work. He can visualize complex abstract mathematical logorithms in his head, run numbers through them, and solve problems that I can't even begin to conceptualize. Now, he can't write it down on paper or communicate it via the written word without major help, but that is why God brought us together. Because I love words and know how to use them fairly well:)Be encouraged. I am glad you are going here.

  3. >Graceling: exactly. My point exactly. My point, exactly. sometimes a nonstandard glitch can combine with a nonstandard strength as well….so presumptions are a mistake. So, good for you Grace! Thanks for this!

  4. >Great post!! I work with children with special needs and grew up with a learning disability that was not talked about, so I felt "secretly stupid". I excelled at sports and got good grades, went to college, got a masters, became an Occupational Therapist and still felt stupid along the way. Once I began talking about it, I felt free. I learned to not only accept it, but appreciate it….I have many talents that others don't even if my brain works differently. Now I try to use my experience to help children advocate for themselves at a younger age. There is a wonderful book called, "Learning outside the lines," I think the author is Jonathan Mooney. He has ADHD and dyslexia and graduated from Brown Unv. with honors. He came to speak to the school that I worked at and I saw it make a HUGE difference for the kids, especially the pre-teen, teen kids.Keep talking about it, and help your kids talk about it. When we keep quiet it send the message that it is something bad, when really it is nothing to be ashamed of. Everyone has a RIGHT to learn differently :)Harmony

  5. >So true. I was the one stating that all they need is more love, more discipline, don't test them and make them carry this arbitrary label for life, etc. Now, I am the one receiving the comments from family and friends…the judgments against me as a mother, my genuine love for my child, (and oh – look out if it is my adopted child!!!), yadda, yadda, and also, those judgments against my child. Sometimes this is a lonely road. Thanks for posting, and be sure to share your wisdom as to how you deal with some of this. Thanks!

  6. >Anonymous & Calmil2: yes. Thanks for the comments! What I want is to be able to say 'out loud" that this kid has this (say it: epilepsy, or HIV, or TB, or ADHD, or CF, or whatever is out there)….pick one…without having to hush it up. I agree w/ you Calmil, I think that intensifies any stigma. If you can't talk about it matter of factly, then how can it be ok? Of course it will hit your self esteem! And as they get old enough to know themselves that they don't process things the same way, or they might struggle, well isnt' it better to be able to just talk about it all instead of send that sense of "hide this"? Sigh. Thanks you guys. A long road ahead eh?

  7. >I'm so glad you're talking about it! I've learned alot from you and from reading the comments. Our children need us to be their biggest supporters–then they will learn that if we can talk about it and stand up for them, then they can too! So put your armor on and go out there, MOM!! Heck yeah they deserve it! And, yes, they are BEAUTIFUL!!!!!

  8. >Spastic quad CP and dyslexia/dysgraphia! Whew. Two of my 6 kiddos have special needs. One that you can tell physically, the other, not so much! You could if you looked at grades, but trust that they will be used for His purposes in whatever they are called to do! All 6 created perfectly in the image of their creator and couldn't be loved more by their mama. One that wears armor to protect them for sure.Love you for being bold, standing up, being a voice! Keep these posts coming. πŸ™‚

  9. >you know i'm cheering you on!!! my mom had to fight for my brother, and has had to fight for my sister… to get them the services they need, and to tell people to please, just please see these kids as real, worthy people. Annie will never be able to live on her own, but as i've told you, she's amazing and has so much to contribute to society… and tyler… he's just amazing… an engineer… blossomed beyond all expectations of traditional education. Keep battling for your children… you have so much support in the midst of people who don't get it!!!! love!!! b

  10. >Hi Dear Friend,Dropped in this evening to say hello. Love the post. We are learning different ways to teach two of our kiddos to read. While very bright, they wander a bit from the educational path that most kiddos walk down.Loved the post and really just wanted to say hello. I am reminded of our fast and furious visits and hugs in the ET airport.Sending hugs to you and your family!

  11. >Coffeemom – I have followed your blog and once again your bluntness touches my heart. I am a "special needs" teacher and I enjoy the challenges and rewards that come with that role daily. Little triumphs are monumental. Hugs are a big reward. Smiles are contagious. That "ah-ha" moment is like no other. I pray that the "stigma" that you are speaking of will be lifted and the children that are such gifts shine brightly through. I will keep you and your family in prayer as you search for ways to create those ah-ha moments. Live for them and take a battle on when needed – one at a time. Rome wasn't built in a day! I don't have adopted kiddos, but I enjoy reading about those of you that have families that are created and touched by the hand of God with a gorgeous array of colors blended to create His masterpiece.

  12. >M, wow, look at the effect of your words. The comments are great. I am a special needs educator and have worn the hat as an advocate for children in many different ways. I do think the labeling makes it difficult. I think there is great strength in finding those with whom you can feel comfortable when you speak your heart and mind. My biggest concern as my first child heads off to K next year is him entering into the education system in which there is an overbearing 'one size fits all' mentality that can dominate. Flexibility in teaching, in being a human being at all, that is grace. We are all 'special needs' and truer words were never spoken.

  13. >Kudos! The first step to breaking the taboo…opening the discussion. . By the way, they are so beautiful….love the pictures…esp the last one.

  14. >Wow what a great post!!! I'm a special needs teacher. You are exactly right. In my disclosure document at school I talk about how it's my job to figure out how these little (kids) brains work and get them the material they need. It is my job to figure out what causes the behavior and teach the child something new that's socially acceptable. One thing you may be interested in is that kids with special needs in some areas typically are brilliant in other areas. The object is to find how you can use their brilliant area to get through the tough area. Here is a plug for Blind side they totally show that in that movie. Good luck with it all. Can I copy this and share it with the teachers at school? It was really powerful and I hate to say this but some of them could really benefit from hearing it.

  15. >I'll be reading and praying! Thank you!MariaSwedish mother across the oceanwith 3 children by adoption (born in Africa)yes! we know about medical and developmental special needsyes! we adore and appreciate and struggle with our childrens special talents …yes! we struggle even more with the school system and attitudes of some friends and family

  16. >So true. So true. I'm with you. I have one with Down Syndrome. It seems okay to talk 'around' down syndrome for the most part. I have one that fits Grace's fiance's pattern. Amazing brain but tapping into it frustrates and amazes me. I have 2 that I just don't know yet. One struggles with language somewhat. The other? who knows? That is one reason we combine home schooling and public schooling. Right now, my kid with down syndrome seems okay in public school. Not sure if that will remain the case. My brainy one would NEVER do 'okay' in public school. Just would not.Do any of us really fit into the 'public school' norm? Isn't that okay? Why can't we just cherish and nourish the differences? God knows how many more wonders we'd create if we did. Jan

  17. >I say Bring it on Coffeemom!! πŸ™‚ Talk about it. I like it. It should be talked about. Why is it taboo? Fortunately, we talk about this often in my family. But, why is it harder to talk about with friends – even strangers? Let's make it not taboo.

  18. >As a Special Ed teacher, I love to hear this. We are pretty open in our house about learning differences, and celebrate them as much as working to compensate for them.With my adhd son, we are constantly getting the "oh no, he couldn't be!" and it drives me crazy. Yes/// he is… and no, it doesn't bother me! It makes him who he is, and I couldn't imagine him any other way.

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