Friday, May 22, 2009

Eval-A-Go-Go

We wanted to go to SuperDoc for the SuperEval.


Alas, our dreams ... at least for now... are dashed.


But that is ok. Instead, we were referred to a speech-language pathologist who used to work for the State many years ago, and now owns a private agency in the Cities. According to the Important Person at the Department of Health, she is one of the leading experts in our area on toddlers with significant speech delays, and has very extensive experience with apraxia. Since so many people have been hinting at that, but no one has been able to definitively say that is what is going on, it has been eating at my craw. So, we decided to go for it and see what she had to say.

The eval was TWO HOURS. Actually, to be honest, it was the best eval we have had. She asked all the right questions, made great observations about Jonathan... even keying into some of his more subtle skills and abilities... and listened to both him and me. It was great.

And her opinion? Well, that is complicated.

She does indeed believe that at least a large part of Jonathan's issues are about motor planning. She explained that motor planning issues (like apraxia or dyspraxia) are not like the issues that adults have after a stroke. There isn't just one area that is damaged necessarily. On an MRI, the brain may look totally normal. But the way the different areas of the brain "talk" to each other is disrupted. In other words, these issues are often the result of discoordination of the areas of the brain responsible for speech and motor movements. Getting these areas to work in consort is where the difficulty lies. Because of this discoordination, the child does not interact with speech and language the same way as other children. Frustration ensues, and it can either manifest as shutting down, disconnecting, or acting out. Often these kids also exhibit poor motor coordination in other areas. They may be slow to sit, to walk, clumsy, or resistant to doing certain motor tasks. Much like my boy.

However, she also offered that he may also have some underlying receptive and expressive language issues in conjunction with these motor planning issues. Since apraxia... pure apraxia... is quite rare and difficult to diagnose, she was quite clear that his story is undoubtedly not done yet. But she was firm in that his therapy needs to be very focused on his imitation skills and getting him consistently making sounds, especially on request. She promised a detailed write-up with very specific suggestions for treatment, and asked us to stay in touch and call if we have any questions.

She was also quite clear that... while the "spectrum" could certainly still be in the mix.... she felt that much of what she was seeing from him really pointed to his language delays. She was firm in saying that unless there was a dramatic change in his behavior.... greater social withdrawl or sensory issues... that a specific autism evaluation might not buy us much but a "label". And since we already have services, and will continue to have services given the extent of his language delay, there is no need to impose any other label on him. Useless, actually.

It was one of the best evals that we have had. I am not sure she told me anything more than what I already suspected, but I do feel like she really understood Jonathan and was able to articulate his needs. It will take me a while to digest what this might mean...

I was... am... impressed.

Pia

Friday, May 15, 2009

The Return of the Green-Eyed Monster Momma (aka GEMM)



Scene: ECFE Class, Friday

Characters: My alter-ego, Green-Eyed Monster Momma (GEMM), Jonathan, and our class of mommy-toddler dyads.

The Story: Every Friday we go to an Early Child Family Education class called Toddlers and Twos. It is a mommy-toddler class where we (the mommies) play with the kiddos for about the first half of class, and then“break away” for the second half for the ‘parent education’ portion.

I have to admit, I have a love/hate relationship with this class. The people are lovely, the kids are cute, and Jonathan needs the social interaction. And I think he enjoys it, the change of pace, the new toys, and even the activity from the other children. He especially seems to have a love/hate relationship with a little boy, ‘Al’. They watch each other and push each other’s buttons. It is really cute and really normal. On the other hand, the ‘parent class’ portion can be a little bit of torture. First of all, the class itself usually covers a topic that is well outside of Jonathan’s Zip Code. For example, the following: potty training (doesn’t know the concept), discipline and time outs (not even close), teaching about stranger danger (uh, really?), and how to encourage your child to help with chores. Seriously, never do I feel as disconnected and inadequate as a parent as when I listen to these moms talk about the things they are struggling with and managing to get their kiddos to do (Little Susie will put away her shoes and jacket, but I just can't get her to wash the dishes yet!).

Well, we hit an all time low.

Today, a mom in my class came in and started telling the following really cute story:

'So, 'Susie' has been peeing in the potty for about a month now ('Susie' is 22 months old, by the way). But ya know, she has never poo-pooed in the potty (yes, they use words like poo-poo). So this morning she told me she had to go potty, and while on the potty she had a bowel movement!! I was sooooo excited, but little 'Susie' was very upset because she wasn't expecting to have poo-poos. I said to her " you must have been very suprised". And she responded "Oh Mommy, I shockeded!". Isn't that just sooooo funny?!?!'

At this point, GEMM reared up her ugly, pissed off head and tried to crawl out of my body to tear this mom's eyes out. She didn't. I laughed along with everyone else, while trying to curtail the seething rage that GEMM was inspiring.

Not only is Little Susie potty trained.

Not only is she now poo-pooing in the potty.

But she is having conversations with her mother about her emotional reactions to poo-pooing in the potty.

Great.

I'm going home.


Pia

Tuesday, May 12, 2009

Bake Sale for Therapy?



Jonathan is such a puzzle to me.

The search for a proper diagnosis is on again. Or at least, I want it to be.

This fall Jonathan will be required to have another comprehensive evaluation by the school district. I am not against this, per se, but I really want this evaluation to be completely unbiased. And (no offence to the powers that be) I am afraid of individual biases or agendas getting in the way of what is Jonathan's true picture.

So, I decided I wanted to see if I could find a professional locally who can be truly objective, comprehensive, and deeply delve into Jonathan's unique picture. So I have started searching for someone locally who can really accomplish this. Without bias.

So, boldly, I called Dr. Stanley Greenspan's office at George Washington University Medical School in Maryland. Dr. Greenspan is the developer of the Floortime/DIR model, as well as being a international expert on developmental disorders, autism, sensory processing disorder, and other 'spectrum' issues. He is not only an expert, but his also extremely open to the idea of looking at the individual's own skills set versus 'fitting a child into a diagnosis'. Dr. Greenspan is one of the featured experts in the documentary Autistic-Like: Graham's Story. He is a guru!!!

I called his office largely because I wanted to see if there was someone who might be able to tell me of a local professional who is highly skilled and knowledgable, but not predisposed to call everything autism. I left a message and received a call back today. They really weren't able to give me any local professionals, but they did say that they had room in Dr G's schedule for June and July! WOW!

Ok, so this would be super wonderful cool! Of course, it is in Maryland. But, hey... we could call it a vacation. Go for a long weekend. Hit up D.C. But then came... the cost. $1800. Ouch. Can you say house payment? And they don't submit to insurance. Double Ouch. And in trying to figure out if insurance will pay anything, we are getting a very confusing run around. So, it probably won't be able to happen. I would love to be able to figure it out, money wise, but I am just not sure how. We already spend about $400 a month on his therapy!

In the meantime, we have also been referred to a SLP with extensive experience in Apraxia. She is local, which is good. Apparently there may ALSO be an insurance issue, because she is not at the current clinic we attend. But that is a fight I am willing to take on.

I am not sure why I care so much about diagnoses. I am not sure it matters... it isn't like there is a pill or therapy that "cures" autism or apraxia. But I guess I feel like if we can get to the root to his issues, we can build up from there.

Wish us luck as we navigate this path! Any insight or suggestions are welcome.

Pia

Saturday, May 9, 2009

My Mother's Day Flower

One of our many therapists planted this flower with Jonathan for me the other day. He didn't really like the dirt (weird kid) and really didn't want to touch the flower, but he did half-heartedly participate in the planting.

After therapy, he noticed the flower on the counter and pointed to it. I picked it up, squat down (oiwee! my knees!) and said "Fllllooooowerrr". He reached for it like he was gonna crush the bejesus out of it, and I said "ooooohhh.. gentle". Then I carefully 'pet' the flower and did a very exaggerated, over-the-top sniff-sniff of the flower, saying "yummmmmmm'.

Jonathan seemed fascinated in this strange behavior of his mommy. I repeated it several times as he moved around me in rapt attention, grinning. Finally, I said "oooh, your turn... smell" and I sniffed the flower again. I leaned the flower toward him and...

Sniff -sniff!

Ok, it was really more air OUT of his nose than air INTO his nose, but he made the effort. And he got a whiff of the less-than-exciting fragrance of this flower. He understood. He pushed the flower back to me and I sniffed. Then his turn. My turn. Daddy came in. Daddy's turn. All the while he would make this sound that sounded like "ooouuuww". It had the same inflection and intonation as the word, just missing a few elements here and there.

This level of turn taking and imitation is NEW. Exciting! He did it again the next day, and later at the park with totally different flowers. Each time he sniffed and shared with me.

Happy Mother's Day, all you mommas! Enjoy these kind of moments, and let them carry you in the darker days.

Pia

Monday, May 4, 2009

Small moments

Jonathan's Grinch Name
December 2007

Tonight, Jonathan and I engaged in a battle of wills.

Jonathan has determined that the best thing ever is to pull a chair up to the TV, stand up and put his face on the screen. I am not sure if this is a visual stim thing, or he just thinks it is cool. Who knows? Generally, he really isn't a "stimmy" kid.

Tonight I decided to put my foot down. Jonathan would pull the chair over to the TV. I said "No" in my sternest mommy voice. He would whine, cry, and look at me out of the corner of him eye as he ever so slightly would move the chair closer. I would move it back. Cry, whine, sneak. Finally, as I sat on the sofa with Dan and watched him slowly try to inch the chair back toward the TV with the very corner of his eye on me, I said "Someone is gonna go nighty-nighty!!"

His head whipped up and his eyes met mine with instant recognition. He knew EXACTLY what I said. And more than that, his expression also said yes... nighty-night is exactly what I want.

I repeated "Nighty-night? Ok, get blankie"
.
He started looking around for his blanket. Dan said "on the chair" and pointed. He ran over, grabbed his blanket, and reached for me. And off we went.
.
Most of the time we really are not sure what he understands. I know he knows more than he lets on, but often it is difficult to ellict responses to our verbalizations. However, tonight we really got to see him react to our words. Follow directions. Engage in real social non-verbal and receptive verbal communication.
.
Small moments, but important ones.

Pia

Friday, May 1, 2009

The Birth of a Blogger?


I started this blog with the intention of just recording the steps that we go through to help Jonathan communicate and to record our progress over time. Sorta like a open diary/self help blog.

As time has gone on I have found it to be theraputic. And revealing... both to you and to myself. Funny, I find myself writing or confessing things here that I don't/won't necessarily say out loud. That is not to say that I don't commit a little bit of self-censorship. I confess I know that certain family and friends may read this, and I am never sure if it is ok to possibly offend them with my honesty. There are entries I have decided not to write, for fear of leaving hurt feelings or sentiment.

But lately I have been reading quite a few other blogs. They are filled with stark honesty, truthfulness, and love. The love of their child, yes, but also the love of the written word. Of writing down their stories, with all of the warts and horrors, joys and laughter. They craft these sites for deeply personal reasons, but you can tell that it is more than just babbling into cyberspace that they are doing. They are writers, storytellers, bards, poets. They take the truth of their lives and turn in into the truth of OUR lives.

I am inspired by these people and find myself wanting to make this effort more than just verbal diarrhea. I feel like a fetal writer about to be born.

So if my birth is messy, or longwinded, or boring... please forgive.

Pia

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