Dear Babble, Special Needs Does Not Equal Autism

Special Needs Does Not Equal Autism

It’s a typical afternoon here in our household.
The girls are both crying and I am wondering why I haven’t chilled any beer.

Without a doubt, the hour after school is the worst one of the day. The girls are tired from having to hold it together and though I have mentally steeled myself all afternoon, I invariably lose my cool over the thirty-fifth screaming argument in the 10 minute ride home.

And though I know that soon all will be calm after the magic combination of soothing plus snacks plus bathroom trip plus show; I still consider running away from home everyday around 4:30.

Except for Mondays. Mondays are often THE WORST because I have worked in Calamity Jane’s classroom and been subject to a close up view of her paranoia and the way it makes her classmates pull back. And then there is the dreaded “Star of the Week” board with the birthday party and play date pics that CJ is never a part of. From across the room it taunts me as CJ cries and I rub her back.

But every other week, Mondays are the best day. Because both of the girls have in home therapy and are occupied for the not so happy hour.

To avoid my tendency to fret over wrong answers and slow progress, I sometimes escape to the basement during therapy where I spend a blissful thirty minutes surfing the internet. I usually lose myself in some random slideshow of funny pictures, most often from the parenting site Babble.

But today Babble did a number on me.

I should have known what was awaiting me, this being Autism Awareness Month and all. I have often joked that I want to write a post called “F*@k Autism.” Not because I hate Autism but because I hate the intense focus on it to the exclusion of everything else.

Actually, I should redefine my feelings as love-hate. I love that Autism has been brought out into the open. That it has changed the way the public things about kids “acting out.” I love that more research is being done on special needs because of it. I love that there are so many outspoken parents who have pushed to get funding for services and technology that kids, including mine, desperately need.

What I hate is that it seems to have pushed every other special need out of the picture. It can feel like you’re only special needs if you are on the spectrum or a serious physical/chromosomal issue.

And when I look at lists like Babble’s (which includes blogs not about Autism) the shadow of invisible disabilities feels even more cold. In a world where the joke is “every kid has a diagnosis” those of us with special needs kids are still fighting to have our kids’ needs legitimized. Please Babble, let our voices be heard too.

Comments

  1. Love this post! Yes, it is important to be heard and get the services you need! We have a few kids in our family with special needs. They need to be heard and get their needs met!

  2. I oh so feel your pain and what your saying! My husband has lung cancer, well yes I am a women so I totally understand all about breast cancer awareness and how important it is but cancer is cancer!! Research for one and all would be nice, more people die of lung cancer while funds go else where! Same as this, awareness should be about the whole not broken into little groups, where one gets all the benefits and the others fall thru the cracks!

    • Lung cancer is so hard to fund because it’s assumed that you have lung cancer because you chain smoked and you deserve it. What if you did chain smoke? No one deserves lung cancer, the stupid things were created to cause addition. You can’t fault people who became addicted to something that is sold legally and promoted like candy. And what about the poor people who never smoked and got the got lung cancer – it does happen! I feel for you.

  3. Thank you so much for sharing! It takes many voices and I am also inspired by yours!

  4. How utterly frustrating. There really isn’t anything to say that you haven’t – other than…YOU are an incredible Momma. Keep up the great work, and may blessings be with you all.

  5. I can see how one could feel their child’s special needs are being hidden in the shadow of Autism. Like you said though, the awareness being pushed for is helping many because of money raised for testing. With the autism rate skyrocketing year after year, higher and higher, if we can’t figure it out, is there hope for all the others even?

    I think you hit on the real issue at the end of your post, that you feel your childs needs need to be legitimized. We are raising children who turn into adults who feel like they need things validated by others, by authority, by society and when we don’t get it…. well, we can lash out too. So taking a page from your book as they say, “f*@k legitimization” we need to stop looking outside ourselves for it.

    • The issue with legitimization is that you need it in order to receive services, especially through the schools. Schools are underfunded and understaffed and the temptation is to push everyone into the therapies for Autism. But often those therapies are the opposite of what kids with non-spectrum disorders need. And then there is the problem that with more obscure disorders and learning disabilities that can not be diagnosed at a young age, the kids are labeled as “slow” and given no services.

  6. Children all have special needs. It is so important to understand the child and not give them a generic stereotypical label. So sorry Monday’s are such a rough time for you and the girls! It is tough to be a mom! And even tougher when online sites do something to distance us even more.

  7. Great post, thanks for sharing this and spreading the word on ALL special needs! Looking forward to that “F Autism” post. lol

  8. As a mom with an Autistic child I’d like to be far less aware of Autism – that seems like a much better goal.
    I’m so sick of hearing about Autism I want to run and hide – do we really need an entire month to celebrate something every person on earth hopes their child never gets?
    I feel for you, it’s not easy having a child that has special needs, it does seem like the rest of the disabled population is in the land of needs forgotten.

  9. I’m with you all the way! I’m not saying I’m against Autism – I have several friends whose children have autism. I will support their family and their cause 110%! However , autism is not the only one out there.

    Let’s bring more awareness to those special needs that one can’t tell – the non-physical ones. Our family is one of those. My daughter has a brain injury and some vision issues, other wise she looks like a normal kid. However, she is not. Let’s teach adults and kids how to behave toward someone else who is different and acts different.

    One more thing (and I’ll get off my soapbox) yes all kids are special in some way and they should all be treasured. Please don’t classify your child’s “needs” the same as a truly special needs child with an actual diagnosis. For when these children get older they will still have these issues and a normal child will usually grow up and develop into an adult who doesn’t need help/assistance just to live day to day.

    Mondays are hard for my daughter too.

  10. I have a child with Autism – and as a special needs parent – I think all types of special needs need equal attention. All of these children need the services, and a funding, and the research. Autism Speaks is a huge organization that is doing this for Autism, and I’m sure if a huge organization took their model of marketing there would be the same awareness for other special needs. But there isn’t. That’s what needs to change…Not Babbles special needs top 25 blogs list…

    • Unfortunately there isn’t a central organization. I do think more awareness of special needs would lead to one. Sites like Babble bring that awareness. That’s why I want to see a broader spectrum of special needs covered on their site. I actually tweeted that sentiment out last week before the list even came out. It’s great that they have a list and awareness is brought. The issue is that it is the only thing they are covering. And they are lumping special needs that aren’t Autism under it (like putting Fighting Monsters With Rubber Swords on the list.)

  11. Kate, I feel your frustration. My autistic son is now 20 and severely autistic. I’ve watched the progression over the years from obscure to in our face. I can remember watching Jane Fonda touting the sad state of Juvenile Diabetes and thinking – wow! If only I could teach my child to eat differently and give him daily shots – I’d be in heaven. Instead, my son bangs his head until it splits open, breaks windows, hits me, dents cars, can’t tell me when he’s sick or hurt, has no friends, functions at about 18 months, will be with us until either he passes away or we do, there is no funding to services, make a wish couldn’t give a crap about us because his death isn’t eminent, we can’t get sitters, everyone stares at him when he has issues in public because he looks normal, we’ve been asked to leave a theater with a Disney movie because he got up one too many times – so we don’t do it anymore, etc. Still, I’d never say F Diabetes! To each parent, the needs of their children are paramount. All children are special should receive the attention they need to make progress in this world. Parents have to be their number one advocate not some blog or group.

    • Thanks for the insight Paula. I do get your metaphor. However, I disagree that blogs and groups should be be involved in advocating. They already are and as a parent, I would be doing my kids a disservice not to use them for advocating.

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