What Do You Think?

Here’s an excerpt from my Mom’s Christmas letter:

“Also for the past two years, we have gone to City once a week with Nathan as he has ben diagnosed as Autistic and needed speech therapy.  With his parents working full time, and us not, we volunteered to help.  Nathan is in Kindergarten & is advancing quite well.  His Autism is not severe, for which we feel thankful.  He has trouble with his speech and some motor skills and his attention is sporadic.  Trevor was his aid at Nursery School for two years and Nathan has a new aide at Kindergarten and he loves school and his teachers.  The school system is so much better for special needs kids nowadays.  Michelle knew before 18 months of age that Nathan had problems and had to fight for recognition and help.

It was due to her efforts that Nathan has progressed as well as he has.  She would not let it rest.  She researched so much.  The family learned baby sign language, which was the most tremendous thing I have ever seen done with small children – to give them a voice – when they don’t have one!  Nathan is a very loving child, but somewhat shy, he has trouble meeting your eyes, and he doesn’t like loud noises or the dark – but school is changing that!  He is even learning to play with children, instead of just beside them.  Thankfully, he is a happy child and likes ot share and is very bright.  (Grandma’s brag)  He has quite a memory and can put together puzzles – has for a long time.”

So, on the on hand, I am very touched and humbled that my mom thinks I’m the reason Nathan has done as well as he has.

On the other hand, I wish that I had mentioned the diagnosis in my own Christmas letter.  I just didn’t want to talk about it, it always seems like such a downer & I write a very upbeat, rhyming couplet-style letter.  Mostly, I just didn’t want to try to explain what Autism is in 30 words or less.  (Besides, nothing decent rhymes with Autism, diagnosis or banging your head against the wall – me, not Nathan)

What do you think?  Was I a total wimp & should have owned the diagnosis in my own Christmas letter?  Did I miss a chance to advocate & educate?  What would you have done?

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Co-operative Play Update

For Immediate News Release:

The parents of Nathan and Eric are cautiously pleased to announce that cooperative play has officially begun in their home. The most recent example of this extraordinary behaviour was observed this morning in the living room. Nathan was observed to drive a toy tractor and baler through a field that has been recently combined by Eric. Nathan requested direction of Eric saying “Is this field ready to be baled, Eric?” To which Eric responded “Yup, go ahead, Nathan.”

While cooperative play is not news in most households, it is an incredible development for this family. Nathan was first diagnosed with a gross developmental delay at the age of 2.5 and it was unclear at that time if he would ever reach this important stage. Nathan was diagnosed with Autism at 5 and doctors offered little hope that Nathan would ever learn to play like other children.

Fortunately, Nathan’s parents have refused to accept that dark outcome and have sought multiple therapies and alternative treatments for their son. They spend numerous hours helping him learn the basics like ABCs, dressing, self-care and simple chores. Nathan’s mother describes teaching him about how to “play with” someone.

“I had to sit him down on the floor and roll a ball to him and then verbally encourage him to roll it back. His father or therapist would have to put their hands over top of Nathan’s hands and physically show him how to do the task. We would do this 20 or 30 times each time. At the beginning, he could only roll the ball back independently the last 2 or 3 times.”

Nathan’s parents insist that they can’t take credit for this amazing development. Nathan’s father: “Eric has dragged Nathan through every development stage, from potty training to using a fork independently and is now Nathan’s best teacher. The amazing thing is that Eric is only 4 and has no idea how instrumental he has been to Nathan’s success. He simply wants a friend and says Nathan is his best friend.”

While cooperative play is still in its infancy in this household, there is hope that it will continue and thrive here. More importantly, this development has brought new hope of further age-appropriate development. Perhaps Nathan’s mother sums it up best “It is hope for Nathan that has kept us struggling everyday and to see another prayer answered and playing in your living room gives us the strength to continue through the next dark stage.”

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How Autism & Fragile X Are Related

Ok – totally tired today & stealing content from The National Fragile X Foundation.

Did you know?

FACT: For between 2% and 6% of all children diagnosed with autism, the cause is the Fragile X gene mutation.
FACT: Approximately one-third of all children diagnosed with fragile X syndrome also have some degree of autism.
FACT: Fragile X syndrome is the most common known single gene cause of autism.

The point? If you are even breathing the word “Autism” around your child, get him or her tested for Fragile X. Particularly if you in Canada. Why???

It took us more than 6 months to see a child development specialist doctor, who refused to diagnose Nathan with anything. It took a further 18 months to see her again. At this point, she again refused to diagnose, just called it a “global delay”. Suggested genetic testing. Took 6 months to see a Geneticist. Took 6 months, less 6 days to get the results.

And if you haven’t been counting, we asked for a referral to the doctor when Nathan was 2, sometime in 2005, saw her in May 2006, again in September 2007. Appointment with Genetics in Feb 2008, results in August 2008. That is more than 3 full years folks, to get a diagnosis of Autism in June 2008 & a negative genetics test in August 2008. That is a long time of banging your head against the wall.

Yes, our FX test was negative but I am still glad we did the test. There is promising research being done right now for a cure for Fragile X. Wouldn’t you want to know if there was a possiblity of a cure for your child? Want to help find that cure? Donate here.

Not Ready for This..

The school called, the funding application is almost ready.  It should be done by Monday afternoon and I need to come in so they can review it with me.  The application (I guess) has to be approved by the parents & I know it is going to be brutal.  Not positive, not full of cans, has potential tos, is attemptings etc.  It has to be negative, I know that.

BUT

I am not ready to hear it, again.  The points made in the application are nothing new.  There will be no earth shattering “I didn’t know that” moments.  But, I am just not ready to hear that his fine motor skills are at 2 years + 7.  Or that his gross motor skills are 3+1.  Or that his expressive language is at 3+5 (or whatever the numbers come in at).  I know it.  I just don’t want to read it. 

Nathan has made so much progress over the summer & I hope that I am able to remember that as I go through the report.  I also hope I don’t cry.

Genetic Test Results

I got the call from Genetics this morning.  Nathan’s chromosome test and Fragile X test came back normal.

I have to say, I am a bit surprised because I really thought FX might better explain my little mystery man.  So, at this point we are left with Autism/PDD-NOS as a diagnosis.

The one thing I have learned through the last 6 months (less 4 days!) is that Fragile X does not get the attention it needs.  Parents need to know that it might be a possibility.  A genetics test should be ordered for EVERY child who has a developmental delay or a diagnosis of autism.  I live in Canada, where we get these tests at no charge, so I guess that is ‘easy for me to say’.  However, I want to continue to push for Fragile X awareness, to try to give back to the community that has given me so much strength and support over one of the more difficult times in our lives.

So, don’t be surprised to see little reminders, news reports and other tidbits on Fragile X on this blog.  If you are looking for really relevant, good information, please visit Beth over at http://fragilex.wordpress.com  I love her blog & she was one of my first blog readers, so her family has a special place in my heart.

Remember too, 30% of kids with Fragile X have a dual diagnosis of autism.  I think these conditions are linked, it’s just going to take the geneticists time to find it.

So Now What?

Well, I have sat and lived with Nathan’s autism diagnosis for a couple of weeks. I’ve got $100.00 worth of books from Chapters, two new ones from the Library, podcasts I’m listening to as I can, research on various websites, austism action websites & parent support sites….

And at the end of the day, I have absolutely no idea what to do next. There seems to be no “authority” on autism. Lots of professionals who feel they are the “authority” and just as many ready & happy to denounce them as quacks. I looked up DAN! doctors, there isn’t an MD anywhere near us listed on that website. There is a conference in Winnipeg in November that I could attend but I wonder if it would be worth it?

I’ve put in a call to our CSS worker, hoping he may have some insights & next steps for us. In the meantime, we continue with Learning Time. We might even try a modified “school day” starting on the weekend. The idea I have is to work in blocks of time, with activity breaks (unstructured, like a recess) for up to 4 or 5 hours.

Nathan does love Learning Time. I wonder though, how much of it is the Learning & how much is the one-on-one time with Mom? Does it really matter??

So, my lovely blog readers, especially those who haven’t commented before, if you have a “next step” that you recommend we take, I would LOVE to hear it.

The Dx Blog

So, now I am ready to talk about it.

Nathan’s psychiatrist has diagnosed him with the following (pretty much word for word from the report):
Axis (I) (a) Autsim Spectrum Disorder/Pervasive Developmental Disorder – not
otherwise specified
(b)Attention Deficit Hyperactivity Disorder…the cognitive difficulties
are secondary to the diagnosis of Austism Spectrum Disorder/Pervasive
Developmental Disorder NOS

Axis (II) Developmental Delay
Axis (III) Speech/Language Delay
Axis (IV) Strabismus
Axis (V) Global Assessment of Functioning 45-49/100

That is a pretty harsh list of stuff, if you ask me. I’ve come to realize that none of it changes him and shouldn’t change how I think of him. It does. But not necessarily in a bad way. Some of the changes are to make accomodations for his diagnosis. It is reassuring to know that some of his “Nathan-ness” is part ASD.

The one, concrete thing it has done is to refocus our efforts on getting him ready for Kindergarten. I’ve been actively working at “Learning Time” every day. This is when we work on letters, colours, sounds, puzzles, games… for an hour if his patience holds out. He HATES counting, but loves to colour. I think numbers make little sense to him yet, so he can’t be bothered. He looks forward to the time & I have found that I do as well. It is easier now than it was 6 months ago. He’s able to do so much more & I’ve found better resources.

So, we’ll keep pushing & pulling that kid all the way to Grade 12. Maybe he’ll surprise me one day & tell me “Back Off. I get it.” That would be great.

Normal or Something Like it

We’re off to Winnipeg for “A Day Out With Thomas”. The boys are practically turning cartwheels they are so excited.

I can hardly wait to see their faces when they ride the train. I am hoping to take them to the Zoo, an amusement park & a children’s museum (where you can touch stuff!, as my niece says) this weekend. That sounds like a lot. Maybe too much, but we’ll see how they do.

And of course, we’ll be off to Chapters. I love Chapters. The one we’re going to is the biggest one I’ve ever seen. Maybe Toronto has a bigger one. I don’t care. The last time I went, I was there 2 hours & didn’t even look at half the sections. This time I am on a mission to learn everything we can about Nathan’s diagnosis.

And, I swear, I will talk about it in specifics soon. We need to let our families know first. I can’t imagine Mom finding out from a website. But, I am willing to be you all can guess.

It’s all about potential

I am starting to get a grip. Seriously. I think I might even be moving closer to remembering that Nathan isn’t a bunch of letters, just a little boy. I go back & forth on this a lot. Too much probably.

It’s not like the diagnosis matters, right? I used to think so. Now I see why it is such a blow. It is all about potential.

When a baby is conceived, the world is completely & utterly open to him. The potential for his life is limitless. Some babies join our world with limited potential but most enjoy this unlimited time much longer. But as your newborn grows, it becomes apparent that she hasn’t got the grace for ballet or he recoils at the sight of blood. And then they enter school, and their potential is measured, tested, groomed and refined. It becomes somewhat limited, but you know that if your child worked hard, the world is open to him.

But for some kids, receiving a diagnosis means facing that their potential might be limited. Or at least different from a typical child. The hardest part for us is understanding what Nathan’s potential might be. Is it ok to still hope for a normal life? Will he be able to work & live independently? Will he get married, be a father? Are we okay with less?

I think that is where the hurdle is for us. Yes, he is still the happiest boy in the world. What the future holds for him scares me.

Still Not Ready to Talk about it.

I am sorry for being a little harsh yesterday. It might have just been elusive, depending on your perspective.

D-day = Diagnosis Day. And yes, we got one. I’m just not ready to talk about it yet.

I remember how it felt when we did testing for Fragile X. Like a sucker punch, as I realized that this might be a fit for Nathan. That was like a warm-up round.

I kept saying, just give the kid some letters, any letters, and we can move forward with school planning. I didn’t think that a bunch of random letters would mean anything.

I was wrong. They do.

Those letters feel like a piece of ice has gone through my heart, leaving it in jagged edges, exposed and raw.

Worse than that.

We still don’t have the Fragile X results yet. I am not sure I even want to know.

It is by the grace of God that I am still hanging on, keeping it together. But I am dangling so close to the edge. Between my faith & my sons, I think I can hold on one more time.

We’ll talk about the actual diagnosis another day. I need to tell our parents first.