Our Journey Raising Two Children with Special Needs

This blog chronicles our life raising two children, Nicholas 15, diagnosed with Prader-Willi Syndrome and Weston 18, diagnosed with Autism/Asperger's/ADHD. It's the ups, the downs, the joys, the sorrows and most importantly, the beauty of living a life less perfect, a life more meaningful.

Sunday, January 16, 2011

Does He, or Doesn't He?

Filled with energy up to his ears, my son, Weston is a textbook case of a boy diagnosed with severe ADHD. He struggles to control his impulses. He is easily distracted by noise, sound, even unusual smells. He lacks the ability to organize his thoughts or his things. He has trouble making and keeping friends. He is plagued by restlessness and anxiety. He is also loving, kind, funny and honest to a fault.

To top it off, Weston has a metabolism that could heat an entire city. He burns through calories and medications like they were rocket fuel, leaving him hungry and hyper for most of the day.

We have worked with many professionals, for many years, in an effort to help our son stop his engine from revving so high and allow it to putter merrily at idle speed.

This year, Weston transferred up to the middle school, unfortunately with disastrous results. A change in medication caused his moods to escalate out of control. The school supports we discussed during his many IEP transitional meetings were never initiated. New personnel at the school were woefully unprepared to handle Weston's issues. His difficulties handing transitions and understanding social situations spiraled way out of control until at last Weston found himself suspended from school with a self esteem now in the gutter.

It took many meetings with principals, teachers and finally the superintendent before we were able to get Weston out of crisis mode. My job skills as an advocate were pushed to the max. The sword I carry hidden by my side was pulled quickly from its sheath, held high and gleaming many times during these many meetings.

Of course, after stabilizing the situation at school, now came the time to sort things out with Weston's medical team. During one of our many meetings with the school, the teachers told me they believed Weston had autism, since he had trouble maintaining eye contact when confronted.

Our psychologist, Dr. N, was adamant.  No, Weston did not have autism. She explained how anxiety run amok can often mimic the characteristics of autism. Since Weston was in crisis mode, diagnosing Weston with autism at this time was reckless and  dangerous. I agreed with her and brought her in to speak with the school.

Next stop, the psychiatrist, Dr. S. He immediately took Weston off the meds that sent his moods spiraling through the roof. We discussed our options for controlling Weston's symptoms of ADHD throughout the entire school day. Since Weston's metabolism is like wild fire, he burns through the long acting versions of ADHD meds like they are baby aspirin. Both Dr S and I are reluctant to raise the dosage of these meds since there is no long term data to support the safety of using high doses of these meds for long periods of time, particularly in an 11-year-old boy. High doses of these meds can also cause negative side ffects like motor tics and an increase in anxiety.

Our dilemma now, however, is how to ensure a quality of life for my son that protects his precious self esteem? We decide to give Weston a small second dose of his existing med while he is at school.

I asked Dr. S, does he think Weston is autistic? His  response? Yes!

"What?" I asked somewhat stunned. I thought out-of-control ADHD and anxiety can "look" like autism?

Dr. S explained to me that since Weston has trouble relating to others in social ways, he could be considered "on the spectrum". He further explained that psychiatrists now are reluctant to categorize individuals into subsets like autism, aspergers, bipolar, or ADHD since all of these disorders have a wide range of symptoms that seem to overlap. There can be a wide range of how an individual is effected by these symptoms. So, current psychiatric practice is now to diagnose the individual as "on the spectrum" if he/she has several symptoms and trouble engaging socially.

Oh brother!

I now have two of my most trusted professionals who completely disagree with one another.

My question still unanswered.....

"Does he or doesn't he?"

Dr. N and I decide that it is time to schedule Weston for a neuropsych evaluation. Since the school is performing their own, we decide that it is in Weston's best interest to have an evaluation performed by an unbiased outside source too so we can compare results with the school's. Dr. N and I also suspect that Weston may have some undiagnosed cognitive and learning difficulties that are making him feel lost in class, further adding to his anxiety and feeling of inadequacy. We are also hopeful that the test will help to clarify which professional is correct in their diagnosis of Weston. And finally, it will put to rest, my biggest fear.

Does Weston have autism?

So last Thursday, the day after our big blizzard, Weston took his test.

Things at school have settled down considerably for Weston. His second dose of meds at school has helped to keep him more focused and successful. More supports have been put in place by the school and for the first time in many months, Weston seems happy.

If Weston does have autism, as a family we will qualify for more assistance from the state and the school, which is always a good thing. And really, what is one more diagnosis in this family?

However, do I want to slap a questionable label on my son that will follow him for the rest of his life, perhaps effecting his ability to hold a job, to join the armed services, or even to get married, if it is not necessary?

I guess these are questions that soon will be answered when we receive the results from his test.

That is one envelope I am not anxious to open.


GB's Mom said...

My 7 year old daughter, who was already diagnosed with FASD and Bipolar disorder, had a neuropsych in November. I felt steamed rolled when they told me before the testing was done that she was autistic. I put my head in the sand for almost two months before I was able to deal with it. After reading the 11 page report they wrote again, I realized that they were right and all of their points were backed up with specific examples of things she did during the testing. Everyone they mentioned, I had to agree sounded just like her. I think most autistic kids suffer from high anxiety. Autism is just a word, but right now, here, it will open the door to services that can make life more doable for him.

Lisa said...

Thanks so much for your post and your supportive words! I am preparing myself for the news as I wait for the results of the test. Of course, how does one prepare for such things? I guess no matter what the outcome, we do still win. If he is austic, it means more help, if he is not, then we avoid another diagnosis. Either scenario is good.

And of course, as always, I am hoping for the best for Weston...whatever that may be!

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