Saturday, February 02, 2008

My kid is more special than yours.

I have been so uncharacteristically quiet about the early intervention and speech therapy that Bubbles has been receiving for the past two months. I could spend more pre-sleep hours trying to analyze that one, or I could just jump in.





:::splash:::



Bubbles has an expressive language delay. Back in November, around his second birthday, I self-referred to our regional center, the early intervention referral center. I mentioned to a few people that I was concerned about his speech; that I knew he was supposed to be using more words at this point, and I wondered if we were dealing with a language delay, or if the delay was pointing to something more serious. Every person I shared this with was incredibly helpful with their comments of how I was 'overreacting', and how they knew a boy that didn't talk until he was (fillintheblank) three, four, two and 1/2, etc....and he turned out just fine, and I should stop worrying, blahblahblah. And so I of course, stopped worrying stopped sharing my concerns with everyone and made the phone call.

A long, long time ago, I was going to college to become an early interventionist. When I was just 18, I made a choice to work with children with cancer through an internship (that I kept for two years). It may not have been a wise choice, because it ended up thoroughly confusing me about my future, and caused many internal struggles that ended up confusing my career path for years to come. But the background (early intervention) is still there, and coming from this perspective, it seemed to me quite negligent if I was able to pinpoint a real delay in my son's development, and then choose not to do anything about it.

Another thing I want to say about this (only because so many people express surprise when I tell them that we self-referred Bubbles for an assessment) is, that most people seem unnecessarily afraid of these services. Afraid of a label? Afraid of being involuntarily recruited into the 'special needs parents club'? Afraid of HELP?

We were fortunate enough to receive EI services with Elijah, and our experience was that this county is well-funded and well informed about the benefits of early intervention, and one would be a fool not to take what they have to offer. When a child turns three, their therapy (if still needed) will not be funded or provied by EI, but a family will then receive an IEP through the county office of education. Most parents should know that services are much harder to receive once in the hands of the impoverished school districts, and even more difficult if the services were not in place prior to age three (through EI). Also, EI is just that: Early Intervention. Why wait until three or four to deal with something that could be addressed at age two? If you know anything at all about a child's brain, you know why these are called the formative years.

So, when Bubbles had about six words at eighteen months, and still about six words at nearly two years, I knew I had to turn him in make the call. Within two weeks, the regional center coordinator came to my house with a child development expert (who is also a behavioral psychologist), who did a full developmental assessment. Seriously awesome. In another week, we received the results and a conference with the specialist, who made her recommendations for service: two hours/week for speech therapy. We would be receiving services/therapy from her organization, which uses ABA as a primary method of treatment. The results of the BDI had supported my 'overreactionary' claims; Bubbles indeed had a language delay - in November, just after his second birthday, he was assessed at a TEN MONTH level for his expressive language.
The good news was that this appears to be a singular delay (he tested at a developmentally appropriate level or above in other areas, including receptive language), and when the delay can be isolated rather than part of a group of symptoms, it usually means that it is just what it is (a language delay), and not a red flag for a more serious delay.
Of course, now that we are working with an ABA program, I have even more judgment to deal with than what I received for merely being concerned about his language development. If I go into detail of his behavioral-based therapy or even mention the term 'ABA', within the moments following, I am sure to be heard saying "No, he is not autistic." Because, invariably, the only people that have heard of ABA, have heard it only when paired with autism and treatment for autism. (Not that there's anything wrong with that...)
But oh! People have opinions! That must be shared, and usually with superiority and/or disapproval. While we are home fussing and making a big deal about Bubbles' language delay, fretting and freaking, there are people who are not wasting their time, they are putting brain cells to task with their grave concern over our inappropriate parenting. Because when you tell someone that your child is receiving therapy for their behavior, then the instant interpretation in their brain goes like this: "Behavior therapy=problem! Ohmygod, that woman has a child with a behavior problem. I am so glad that my child does not have a behavior problem."
And interestingly enough, even when you say this to a friend who lets her own toddler get up in the middle of the night and 'have snacks and play for two hours', this same friend will remark about what a good thing it is that you are 'nipping it in the bud'.
So my lesson here is, if I mention that I have a stubborn little two year old (redundant?) with a speech delay, and that we are working with a behavior-based therapy to get him to use language because we have determined that it is more based on his desire and incentive to speak rather than a physical issue (or apraxia), then my child is instantly labeled as a behavior problem.
Wow. If I cared, that might really bother me. It doesn't really bother me, it just slightly ticks me off and makes me file away tiny little petty grudges against these people.

Way more to come about all of this. But I can't spend the entire day blogging. I have to go now and crush my little boy's spirit stubbornness.

13 comments:

nailgirl said...

It is unfortunate that in todays society, people still are judemental and label certain types of kids. It sucks ass big time.
I rarely mention that my 12 year old has a mild form of a.d.h.d. for this very reason.
Now in Cameron's case my little guy, a lot of people/friends etc know about his delays and/or deformity because well it"s hard to miss. They tend to feel more sorry for him "oh that poor little crippled boy". I hated their looks of pity when he was in his casts or his braces. I had half a mind to tell them that he was abused my a care giver just to horrify them. Am I mean or what?
Now when Cameron runs and believe me it does look funny, I am thankful that he can run awkward or not. He has come a long way baby, and your Bubbles will too. Fuck people and their labels :)

Green Kitchen said...

Now I'm wondering even more about my little guy. But, I'm one of those people who won't get help, not because I'd hate the label, but, because I'm a big lazy ass. But, thanks to your timeline, I can now procrastinate until he's about 2 1/2 before I decide how to get my ass detached from the computer chair.

Lin said...

You're a terrific mom, Miz G.

xoxo

nailgirl said...

Hey gwendomama, I forgot to add that I too self referred myself to our agency in the area. You have to remember that no one knows your child better then you do. We are our childrens best advocates. Cameron almost didn't meet their criteria for services. Apparently having one club foot, and one hooked foot wasn't enough. But since he was born with what first was thought to have no uvula, and then later discovered to have a very tiny one. Thus lableling him with cleft palet issues. i.e a sub mucous cleft palet, then the two combined issues were enough to qualify him for services. He also was evaluated and found to be three months behind developmentally. True to form he sat up at 8 months, crawled at 11 months and finally walked at 14 months. They are not sure if he will eventually need speech services or not because he is talking. Gosh sorry for hogging up space on your blog. Geesh.

mamadaisy said...

good for you for trusting your gut and getting it checked out.

i never know if telling someone (teachers, etc.) my son's "label" will help him or hurt him. people can be so judgmental.

AmyB said...

Wow. People suck. Good for you for taking care of your kid. I personally pass more judgment on the snacks in the middle of the night....

Actually I have learned that judging anyone is a great way for karma to bite my butt. My kid won't stop talking...back to me.

Guess what I do when I am not a SAHM? I am a clinical therapist for children and families. Feel free to laugh, as it is the only coping mechanism that is working for me.

You are great. Don't listen to the haters. :)

squid said...

Lucky Bubbles to have you for his very own ass-kicking Gwendomama. Keep me posted and feel free to send questions all day long. Though it reads as though you are very, very well covered.

As you may imagine, I have a very large stick up my ass about ABA. Most people think I am forcing my child to do endless drills at a table, all day long. But ABA is Applied Behavioral Analysis, and all that means is using whatever carrot works to get your child or cat or seal to produce a desired behavior (more words, walking on hind legs, playing "Mary had a little lamb" on bulb-horns") and then keeping track of your results. That's all it is.

One of the most common methods of potty training uses the main component of ABA, reinforcers (stickers, M&Ms, getting to aim one's pee onto cheerios in the toilet bowl). Bring this up.

I personally think ABA is magic and use behavioral techniques all day long with all three of my kids. To paraphrase my good friend Ep, if you are already swimming with an orca and you need it to do something specific, should you use positive reinforcement like a fish, or should you yell and slap? What do you think will get you both the best result?

Tricia said...

So, I'm talking to my Aunt about my little wee cousin who can't stop moving..blah, blah, blah and say "Oh, he reminds me so much of Leo...when we had him evaluated for ADHD the doctors asked if he has always liked to be on the move..." The boy never was still, never. (and I'm leaving a bunch of other stuff out here...) And my aunt responds "Oh, gawd, no Not that, I hope..."

Nice, huh?

gwendomama said...

nailgirl: yes, you are a smart woman to know how lucky you are all that cameron can run...because that is nothing to take for granted, ever.
as far as the strangers' reactions, you could take that as your crusade to educate. they want to ask but they are too embarrassed (or rude!) to ask.
i canNOT believe what it took to get help for c. seriously. that would never happen here. i hope.

greenkitchen: don't wait. you don't even have to get off yo ass, just email me and i will send you the local info - and you will be so happy b/c they will come to your house. they will not judge.

lin: you flatter me. i love you. can i house sit for you? if you have wi-fi, of course. i promise to bring my OWN laptop to spill shit on.

mamadaisy: i am slow leRnR. also, have the problem of NOT GIVING A SHIT.

AmyB: who are you and will you be my friend?

Squid: i want to marry you, ykwim.
yes, i have the questions!! so many of them!! and you will regret that offer, because i will have questions for you ALLTHEDAYlong.
and love, lots of love.

tricia: i know, you are also married. anyway, HOLYSHIT what a stupid thing to say!!!!!! that was for you.
now take a breath.
:: :: ::

she is just afraid.

Anita R said...

Deja vu, in a sense, for me... my youngest kid is nearly exactly 1 year older than Bubbles, and started speech therapy last February... in his case, for articulation delay... and will be having his last speech class this week as he's now caught up. I also had people questioning why we were intervening so young, though it didn't approach the level of cluelessness you are getting. Anyway, best wishes to Bubbles and I hope that his speech issues resolve fairly quickly.

DadaMama said...

Hello, special ed teacher here (not my real name). I work with physically challenged high schoolers--a couple of my students also have autism. It just so happens that I live in a state and teach in a school where special ed is not important to the powers that be.

This pisses me off. Every day I put up with the ass-hattery of other people who don't give a damn about kids with needs. I have written many an IEP which no parent ever showed up to sign.

So, my hat's off to you for noticing your child needs help, and for taking the steps to get it for him.

My own son is seeing a counselor because he's four years old, kind of immature, but also too damn smart for his own good. When he was two I realized parenting him was never going to be easy. But it will always be worth it.

DadaMama said...

Hello, special ed teacher here (not my real name). I work with physically challenged high schoolers--a couple of my students also have autism. It just so happens that I live in a state and teach in a school where special ed is not important to the powers that be.

This pisses me off. Every day I put up with the ass-hattery of other people who don't give a damn about kids with needs. I have written many an IEP which no parent ever showed up to sign.

So, my hat's off to you for noticing your child needs help, and for taking the steps to get it for him.

My own son is seeing a counselor because he's four years old, kind of immature, but also too damn smart for his own good. When he was two I realized parenting him was never going to be easy. But it will always be worth it.

DadaMama said...

Oops, tried to link to my site and messed it up. Here it is: www.dadamama.typepad.com/dadamama