Saturday, February 5, 2011

More Words and Big Struggles Ahead

Dylan's word list has grown to over 30 words!!!  So far, most of them are "prompted", meaning someone will say it first and he will repeat.  But oh, how far he's come!  Here are the words he has said.  We are reinforcing these every day.  Keep in mind that he was nonverbal just a few weeks ago, with no functional form of communication!!!  The words in red are his most frequent:

Bye-Bye with wave (verbal prompt)
Nigh-Nigh with wave (verbal prompt)
“No No” with and without verbal prompt
“Catch it” with verbal prompt
“C’mon” only once without prompt
Hug-hug-hug with and without verbal prompt
Cookie with and without verbal prompt
Muh for milk with verbal prompt
“Mama” with verbal prompt
All Done with verbal prompt and paired with sign
Ball with and without prompt and paired with sign.
“Bubb-Bubb” for bubbles with verbal prompt
Pull Up with verbal prompt
“Nana” (banana) with verbal prompt
“Brusha-Brusha” (toothbrush or hair brush) with verbal prompt
“Hat” with verbal prompt
“Gasses” (glasses) with verbal prompt
“Juh” (jump) verbal prompt
“Guh-Joh” (good job) verbal prompt
“Beh-beh” (baby) verbal prompt
“Shoes” with and without verbal prompt
“Apple” verbal prompt
“Ssss” (socks) with verbal prompt
“Whisa” (whistle) with verbal prompt
Up with verbal prompt
“Pull” with verbal prompt
“E-I-E-I” (when singing "Old MacDonald) verbal prompt
“Pa-pa” (popcorn) verbal prompt
Ca-ca (when he's had a BM) with and without verbal prompt
“Duh” (dog) with verbal prompt
“Keh” (kiss) verbal prompt
“Sh” (shirt) with verbal prompt
“Tickle” with and without verbal prompt.  He had this word before the autism, and it's the only word he never lost!

ABA THERAPY
His ABA therapy is progressing as well.  It began in September, and the first few weeks of the program he tantrumed in his chair for nearly the entire 2 hours.  It was impossible for me to watch.  Luckily we have an amazing, kind and experienced therapist who shared with me that this was a necessary phase of the learning process.  He first had to learn to sit and take instruction before any progress could be made.  So we toughed it out...and thank God we did!
Yes, I am a graphic artist.  How did you know?
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Once that was over, they had to teach him how to do simple tasks like putting a puzzle together using positive reinforcement and hand-over-hand guidance.  Gradually they phased out the prompting and now I am amazed to see what he can do!  He now enjoys the activities and actually runs to his chair when the girls come over.

Lately his program has consisted of a lot of matching exercises. He's been doing so well that they are now having him match non-identical items.  For example, a picture of an orange matched to an orange colored card.  They are also introducing motor imitation (e.g. following commands like "touch your nose") and teaching him to point to items (e.g. "point to truck").

He is also drawing lines, coloring and tracing his name with just a little help.
{insert hallelujah music here!}

PRESCHOOL
I recently observed a day of preschool and have requested that our ABA therapist come and observe next week.  Our goal has always been kindergarten preparation and I was surprised to learn that his preschool teacher does not share this goal.  After observing, I asked her what the learning requirements were to attend kindergarten and how they incorporate those goals into the class.  Her reply was, "This is not a kindergarten preparedness classroom".

Oh, yes she did.

I asked her if this would change for him next year and she said "no".  She said the activities would be the same for the entire time he will be in her class.

This is a public elementary school that offers a 5-day/week 3-hour/day special education preschool.  The only thing I have to compare it to is my 9 years of combined experience with my older neurotypical children.  They attended a private co-op preschool which required me to work in the class every three weeks.  Needless to say, I became very familiar with the program!

In it, the children were always engaged.  During craft time for example, there were three different crafts at three separate tables with one adult supervising each activity.  When the children finished one project, they moved to the next table, and so on.  No down time.  No standing around waiting.  The crafts were carefully chosen to reinforce learning themes for the week, to incorporate important fine motor skills needed for kindergarten and to challenge the kids just a little bit.  Never were they randomly or haphazardly selected.  Ever.

At the end of the activity, one teacher would clean up while the other two teachers/helpers moved the children on to the next pre-planned and structured activity.  We even had weekly and monthly newsletters to give us a heads-up on show-and-tell, color days, letter days, field trips, etc.  There was a pre-determined curriculum...a set of goals.  Always.  The teacher also gave us resources and ideas for reinforcing weekly themes at home via the weekly newsletter and take-home projects.

What I'm saying is that the class was structured in advance for the year with a goal of covering kindergarten preparedness activities.  That didn't mean every child was ready for kindergarten at the end.  But they took a great deal of care to ensure that they did their job to cover all the bases.  I believe it would be blatant recklessness to do otherwise for any child who has the faintest hope of progressing.  The classroom he is in now spends over 50% of the time (probably more) either waiting to do an activity, walking to/from motor lab or engaging in free play.

I realize Dylan's is a special classroom, but it seems to me that most kindergarten preparedness activities can be modified to work in it.  What I really don't understand is that if kindergarten preparedness is not the goal, what possible goal could they have?  Kindergarten prepares them for higher grades, which helps to prepare them for life.  Why else would I send any of my kids to school?

The teachers perspective is that all the kids are developmentally different and so putting together a program that would benefit them all would be impossible.  I disagree.  Covering basics like letters, colors, specific fine motor/gross motor activities, etc. could be modified a bit for each child with just a little effort.  If a child already knows their colors, they could work on tracing the word "red" with a red crayon.  If another child is further behind they could work on matching colors or coloring with a red crayon using hand-over-hand assistance.  They could have a general goal of learning "red" and modify it a bit for each child.  Same goes for letters, numbers and the rest of it.  At least we would be trying.

There is no saying how far Dylan will progress.  Maybe if we do everything possible to ready him he still won't fit into a kindergarten class (although I think he will).  But shouldn't everyone be doing what they can to at least give him a chance? 

His class has 3-4 teachers each day with 4-6 special needs kids.  The regular preschool I was a part of had one teacher and two helpers for 26-28 kids.

So I am in a hard situation.  With everything we've been through this past two years, I would swear I have no fight left in me.  Not a single solitary thread of it.  I just want to have peace and leave the struggles in the past.

But somehow, when Dylan needs me - I find it from somewhere.

I guess it must be buried deep inside me.  The primal, instinctive, protective mama gene takes over and gives me the strength to do what is needed.  And so I go reluctantly and tearfully along with it.

We are prayerfully considering all our options here, but I am not willing to give up a single hour of ABA nor a single penny from our biomedical budget to send him to a private school.  We just can't.  That much I'm sure of.  ABA and biomedical have yielded the biggest results and are giving him the best chance at a good future.  Plus if we choose a different school option we will lose the 3 sessions of speech per week we fought so hard to get him.

This is where we are.

We have a bumpy and uncertain road ahead, which seems to be a theme in our lives.  And it looks like "fighting" will be a regular part of my existence.  I guess at least it's good I'm not a people-pleaser, huh?   We are determined to do whatever it takes to give Dylan a chance at a good life.  So here we go again.

Please pray for us as we try to find the best environment for Dylan.

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