Sunday, September 19, 2010

Two steps forward

We've been taking some major steps forward with Jakson's therapy. It is such a relief to think that he'll finally be getting the help that he needs from knowledgeable therapists and other professionals-though it of course comes at a financial cost. I am certain it is going to be worth every.single.dime.

So should I start with my bad experience or the good one? Let's end on a positive note....

A bad experience:
Last month we met with the school district for an evaluation to see if Jakson qualified for the special needs preschool. What they failed to tell me was that it was merely a preliminary screening and wouldn't determine whether or not he would be accepted, only what full evaluations he would qualify for. Very frustrating. Especially since they didn't schedule the real evaluations until 3 weeks after school started and in order to continue with a routine, I went ahead and put him back into the preschool has been attending for the past year and a half.

According to their screening, he was in the 85% for speech and wouldn't qualify for speech therapy-a statistic I vehemently disagreed with and one of the main reasons we wanted him to attend preschool through the district. Fortunately, I was able to speak with a very helpful parent at the Parent Center in Salt Lake (an advocacy center that helps parents find resources for their children and understand their rights), before going back for the final eval. and learned that it is my right as a parent to request the full evaluation. If the district refuses, then I can take him to be evaluated by a private practice and the district must pay for it. Armed with new knowledge, I insisted that he get the full speech evaluation. They tried to give me the run around and told me that they weren't sure they could do it, but in the end, Jak was evaluated. Annoyingly, I overheard the speech therapist complaining about it for about 10 minutes. This is the same woman that told me during his screening that Jak doesn't speak in complete sentences (he tends to only use concrete words like verbs and nouns) because I don't expect it of him.

And then I imagined kicking her in the shins.

It's all about self-control, people.

The full speech evaluation indicated that he is in the 14% for speech overall and only in the 7% for reciprical communication. Now that's more like it. I almost turned to the therapist and said "I told you so", but again, I resisted. Unfortunately, because his score is 14% (the therapist told me "this is a very good score"-don't get me started.) and they only offer services to the bottom 7%, he still does not qualify. At least my suspicions were validated.

Jakson, for reasons unknown, DID qualify for the full eval in both gross motor skills, and cognitive development. I was quite surprised, but didn't argue because I thought maybe they had discovered something I had not noticed. He ended up scoring above average in both areas. The Kamikaze Kid scoring above average in gross motor skills (climbing, throwing, jumping)? Shocking (she says sarcastically).

His cognitive scores resulted in the psychologist pulling me aside to talk to me about changing his diagnosis-she felt that he was "too smart" to have autism. My friends, I just about lost it. Autism has NOTHING to do with cognitive skills in most cases. In fact, many people with autism tend to be extremely bright. The shaky fist almost came out. So.much.self.control. It was at this point that I decided that no one at the district has any idea what they are talking about. Ironic, since I am/was a public educator.

Needless to say, I left that whole encounter as angry Beth. He did qualify for the preschool, but since they aren't going to offering him any sort of therapy, I don't think we are going to send him. Anxiety induced meltdowns for six months? No thanks.

A good experience:
About the same time that I set up the evaluations through the district, I set up a consultation with Autism Journeys, a local all-inclusive therapy clinic specifically for children with autism. Going in, we knew that the prices were going to be high, but time keeps on ticking and the earlier we start Jakson with therapy, the better off he will be in the long run. All of this time we've been putting it off, thinking that we are going to move, but it has gotten to the point where we know we just need to move forward here.

All three of us (Zak, Jakson, and I) sat down with the owner/founder of AJ and an occupational therapist to discuss what therapies would be beneficial, if they thought he was a good fit for their programs, etc. I can't even begin to explain to you how refreshing it was to finally talk to someone who knew what she was talking about. We talked about Jakson's restlessness, his emotional and social developmental delays, she answered our questions, gave us (helpful!!) advice, and reassured us that Jakson has fantastic (she actually used the word "insane") potential. It was the first time since we received his diagnosis that I have walked away from a meeting about Jakson without thinking, "I am a terrible parent" or "I just can't do this."

Jakson is going to put on a IDP (individual development plan) which is basically an extremely detailed IEP. There will be a team of professionals (OT, speech therapist, psychologist) working with us to determine Jak's needs and modifying his therapy according to his immediate issues. For instance, he had his chair taken away today in Primary because he just cannot sit still and was apparently rocking it all over the place, so that would be something that we will address with the team-things to help him cope and thrive in his current environment. As I've said previously, we are not looking for a cure, we are wanting to give him the tools to be successful.

He will be starting in the next couple of weeks. It is such a relief. The cost is extremely high ($1200/month without a scholarship, $720 with the scholarship) and I worry how we will pay for it and save for a home at the same time, but we are taking this step into the dark knowing that the Lord will provide somehow. We should find out if will receive the scholarship this next week. Prayers would be greatly appreciated.

9 comments:

Brittany said...

We'll be praying for you! You guys are GREAT parents. Sometime the Lord gives us trials to test our faith in Him and you know your sweetie will do great things. God has his plans!

Also, I worked at our districts pre-school in the special needs classroom and it was great! Your team will do wonders with you. Don't be afraid to ask what methods they use and what you can use at home. Routine is key. They'll help you with anything.

:o)

Amanda said...

Beth, my blood pressure was rising and rising during the first half of your post. I can't imagine how frustrating that experience was. Praise the Lord that you found such a wonderful place that offered knowledge, hope and encouragement! I'm praying for you guys to get that scholarship.

FamilyKolbaba said...

You are a far better person than I am. Blood. Boiling. Nate and I will pray for you...right now. We miss you guys :)

Camille said...

You SHOULD have kicked her in the shin!

Lisa said...

VERY frustrating, but I am thankful for the happy ending.

hillari said...

That is completely frustrating with the school. wow. I read this article and thought of you: http://www.cnn.com/2010/HEALTH/09/17/autism.aba.legislation/?hpt=Sbin
Maybe you've already read it. Anyway, good luck!

Lori said...

First of all, who in the WORLD are these therapists in your district?? That sounded HORRIBLE!! We are trying to get Jack some therapy in his preschool through our school district. His problem is that he tests so high in cognitive and language. The different with us is that the school acknowledges that he needs help in adaptive, social, and motor and are TRYING to HELP us get his qualified for assistance. I am SO SORRY that you guys had that experience.

I also know what it is to have to pay a lot for what he needs. We are currently paying $240.00 per week for the ABA therapy but it has been WORTH EVERY PENNY!!!! We have seem soooo much progress in a really short time!

And now I want to kick the lady in the shin for saying he was "too smart for autism." That statement alone shows that she has NO CLUE what she's talking about!

Keep us updated on Jak's progress!

Audra Bollard said...

I could see your face so clearly in my mind while reading this post--just imagining all of your suppressed angry/annoyed/eye-rolling expressions. She obviously had no idea what kind of educated/resourceful/been-around-the-block type of parent you are.

Soooooo glad there is another route in store for Jak. Thanks for keeping us posted.

Emily said...

Hi-I love your blog and check back here now and again for good crafty ideas (sorry for never commenting...I'm one of THOSE people).
But reading this post about your experience with the district SLP, I knew I had to comment. I'm a SLP and I have worked for a district before. Screenings are almost completely subjective so sounds like she had her mind made up what "results" she was looking for with your son. Which explains why the actual standardized test scores were so very different from her screening.
I applaud your decision to go private with therapists who specialize in autism. You will see much more progress than you would ever see in a public school therapy setting. I hate to bash on my own profession, but there are just as many bad therapists as good out there!
Best wishes to you on this life long journey. You are so inspiring in your determination to seek out the best for your son!!
I'm no specialist in autism, but I do know the speech therapy world so feel free to email me if you ever need an ear. I know this is so random since you don't know me from Adam.
Emily, fellow LDS mommy in CA

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