Continuity
Out of the house, out of our heads

A Beginning? Keep your fingers crossed!

(Not to distract from the topic at hand, but this is my 500th post!)

I’ve been in my cave this week, so to speak, but I’m ready to poke my nose out and growl.  (Nice growling, though. Growling to start conversations, not end them).  For those of you who have read my blog for a while you know that we were having issues with Chance (you can read about them here, here and here, and even some here).  Well, we’ve had some developments recently.

Right before I went to BlogHer, we made the decision to pull Chance out of preschool for the rest of the summer session.  Basically, he was still biting; not all the time but it was still enough that we decided a break was needed.  A break would give me more time to get assessments done and/or work with him on specific issues, and a break for him from the place where he kept getting in trouble (although he did NOT want to leave school).  He continues to be more physically rough, more active, less focused than the kids around him.  (We also have a vacation planned so it just made sense to pull him out.)  

This has been a long road to get assessments done.  I’ve been working on this process since February.  I was getting a lot of feedpushback and random advice, the two most frustrating being “just wait until he’s older,” and “read this parenting book.”  (This from professionals, some of them who hadn’t even seen Chance.)  It’s not as if I wasn’t open to trying different methods – I read the books, I implemented some of that advice – but a lot of it just didn’t feel right.  For example, people advised that I give Chance something to do every single day to “burn off energy”, when my instinct (and experience) was that he would get increasingly wound up if he didn’t have “downtime” days.  When I talked about how Chance always wanted to be on top of people, the advice I got was “just don’t ever let him climb on you and he’ll learn,” when my instinct was telling me that he somehow needed that physical touch.  Although it was suggested that I do hearing and/or speech screenings, when I asked about other sensory processing issues I got pushback.  Frankly, I needed some help (now, not six months from now) and my gut said some form of physical therapy.

A couple of weeks ago I said fuck it and I found a place that would do both speech and occupational (physical) screenings.  It was private and out of pocket, but waiting for referrals or help from the school district was getting ridiculous.

Chance had his assessments yesterday.  The therapists immediately could see, and point out, behaviors leading to the issues we’ve been having with him.  Suddenly, things we didn’t understand made a lot more sense.  Chance is showing symptoms of apraxia and dyspraxia, which are problems with motor-planning.  Essentially, when a person wants to move their body: 1) you get the idea of moving, 2) you plan the movement, and 3) you do the movement.  People who are dyspraxic get stuck at the planning movement stage and need a little extra time for the thought process.  Apraxia is similar but has to do with verbal motor planning, trying to get the words out.  Chance also seems to be hyper-aware of sound and it’s distracting the hell out of him.  The confusion of trying to process everything can cause a lot emotional buildup, anxiety or lashing out. 

Finally feedback that felt right.  Or at least a lot closer to what could work than anything before.  There have been a lot of communication disconnects between what I hear people say about Chance and what I observe.  For example, his school would tell me he can’t do such and such, when I would see him do such and such all the time at home.  The apraxia accounts for when he doesn’t respond to questions or instructions or when he sometimes avoids eye contact when you’re talking to him; he understands everything but he needs the extra time to process.  He could learn something at school and not do it there at all, but come home and do it perfectly.  Chance has problems with “on demand” instructions or requests, both physically and verbally.  This can also mean difficulty with group play.  

As for his activity level and rough playing, the occupational therapist pointed out that kids with these issues sometimes run around "wild" because running around is either easier than the processing or gives them time to process.  Chance seeks out a lot of physical contact because it helps him "ground" himself, releasing physical and emotional energy.  The biting was/is an unfortunate component of that. (Everyone who has ever observed him has said that his aggressive behavior never seemed vindictive, but like "he couldn't help himself".)

The apraxia/dyspraxia is not a definitive “diagnosis” by any means, but I feel like these are elements that we can specifically address that may help get our arms around his behavior.  We will be doing speech and occupational therapy and I have high hopes.

So that’s where we’re at.  Having a plan in place, hearing specific targeted techniques…this feels so much better than reading another book*.  

-         the weirdgirl

P.S. I went to the Parents of Children with Special Needs panel at BlogHer ’08 and I felt a lot of love and support from that community, especially being a “newbie” to this process.  I’ve also spoken to and asked advice from other blogging parents out there.  Your stories and encouragement mean a lot.  Thank you.

*Though, yes, I will be reading Out of Sync Child.

Comments

Evyl

I hope all works out well. It is always nice to have a starting point on getting a kid help.

And congrats on 500 posts.

Lori at Spinning Yellow

This IS good news. I know it is hard to hear that there is a problem but you already knew the "typical" ass-vice wasn't working. I felt so much better when I had something tangible to work on and look how early you are getting help! I bet with the therapy in place things will improve dramatically. Oh, and try the Sensational kids book by Lucy Jane Miller, I liked it better than Out of Sync.

foradifferentkindofgirl

I'm glad you've been given this jumping off point. What you've described sounds a great deal like what my oldest niece experiences. She has a tough time with crowds and noises, and must have time to really process.

Also, woo hoo on 500 posts!

Kristina Chew

hi, this is Kristina---met you at BlogHer and we tried to talk amid the handbags at Macy's......this eval sounds promising and (what a relief) helpful. My son had/has apraxia and understanding the motor planning issues as you describe helped me to see why he did not understand to turn around to go down a ladder, and why he struggled so to produce certain syllables. Physical exercise and activity have always been a huge plus for Charlie.

Onward, now!

very best from kristina

ktjrdn

That has got to feel so freeing. To have a place to actually move forward from instead of having 30 different questions with no answers. I wish you all the best

eve

I know so many moms who have gone through this. I'm glad you have some feedback that feels good to your gut. Good luck with everything that comes from it.

VegasDad

Finally some real assessments. I'm happy for you. As you pointed out, now you can deal with it better. Well done.

Motherhood Uncensored

Awesome WG -- I'm really glad that you've found some answers.

Summer

Very freakin cool....I'm glad you finally got some "answers" and for the time some relief and understanding.

peekay

HAPPY 500! I TRIED TO FIND YOUR FIRST POST... WAS IT auGUST 11, 2005? THAT WAS THE oops last/first post i could find. if that is case then you did an awesome job of blogging the last 3 years. thats some good monthly #s!!! congrats at being a great blogger!
i have been at it 5.5 years and STILL haven't hit 500...holding at 485...

Chag

I am sure the speech and occupational therapies will do wonders for Chance! Like I've said before, if you ever need to talk, you know where to find me.

And congrats on 500!

Suzie

Yea! It's so nice to know that someone else "gets" what's going on with your kiddo, especially when you aren't sure exactly what it is. We had one little man with difficulties and we had no idea until they were identified properly, then everything else (all the weird behaviors) made sense. Glad that you kept after the info!

the weirdgirl

Evyl - thanks so much!

Lori - I felt better even just setting the screening appointment. (Sensational Kids! I knew there was another one out there but no one could remember the name.)

FADKOG - thanks!

Kristina - It was great talking with you at BlogHer. And it's great to hear other OT success stories. Let's keep in touch!

ktjrdn - thanks! All I wanted was a real starting place.

Eve - Special needs, when you look at the whole spectrum of what's included, is a lot more common than people think. I hope your mom friends find help, too.

VegasDad, Motherhood Uncensored, Summer - thanks you, guys!

Peekay - WOW! 5.5 years? That's awesome! And you'll hit 500... as soon as you post more than once a month. :) (Yes, I've been checking.)

Chag - Thank you! I may be asking you for IEP advice soon. ugh

Suzie - I'm glad to hear you worked things out, too. At times, I'm sure there were people who thought I was being pushy or paranoid but I didn't want my son to get labeled as "good enough" academically but a troublemaker, and therefore never get any help that (I thought) he needed. You know?

To Everyone - You've all been so supportive!! I so appreciate it! Kisses to you all!

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