Two nights ago I had nightmares that my son collapsed from his tremors. From tremors... When I woke up I realized we haven't used the word 'tremor' in a few years. We've been referring to his recent episodes as 'seizure like' or 'Tourette's explosions.' But 7yrs ago, at the age of 11, on his list of diagnostics just below Asperger's and Tourette's is the word Tremors.... He's had 3 more episodes in the last 2 weeks, he had a doctor appointment last week and we've been referred to a Neurologist but everyone seems confused. I KNOW these dreams were my push to search for help in the right direction. Just like fifteen years ago I KNEW something was wrong with Geoff's skull. I didn't sleep much, was awake for good at 4am and started searching... First I came across MS info that seems close but not quite. Then I saw Parkinson's and I just knew. Reading through the symptoms it was hard not to cry. Out of 10, 8 are a solid fit and the other 2 have occurred just not as consistently. At the same time, I feel relieved?? It's like the sun came out when I saw the list of symptoms. Such a twisted combination of known and unknown, relief and fear. I finally said something to Doug last night as the kids were getting ready for bed. My husband, who is the fact checker, the one who doesn't believe without 3 witnesses and a signed document. He stopped, thought for a minute, and nodded his head. Then he went into the kitchen to talk to Alex, returning with a grim look on his face and nodding again. It all fits. The full body tremors, the recent hearing loss, the trouble swallowing, the legs buckling when he stands... I told him that I don't plan to say anything to the Neurologist until he's fully evaluated things and then ask him to rule it out if he hasn't already. Doug told me I should say it up front, because I've never been wrong yet on a diagnosis and we can't wait for them to figure it out on their own. I've been down this road before, with the Spirit literally yelling at me to help one of my children because no one else could see what was wrong.This whole last month has been so insane, swinging from the realization that he's an adult and mentally capable of doing all those adult things I somehow never planned for but now the realization that while he may finally be mentally capable his body is completely revolting. And of course I can't tell him yet, can only assist him in tracking his symptoms while we wait for our appointment with the Neurologist. Continue living in medical limbo.
We had known for a while that something was "different" but it took the kindly advice of our son's Speech Therapist to really open our eyes to what exactly was going on. Son A had been in speech and occupational therapy from age 4 to age 6. Due to frequent ear infections as an infant his speech was unclear and his balance was awful. We were also told he had sensory integration deficit and proprioception problems, but no one ever suggested what more could be done or what these really meant.
When he was 6 the Navy sent us to California where all therapy stopped. Since he was ahead of his class academically (he'd taught himself to read at 3 1/2) they didn't see the need for assistance. Besides that, they only had one therapist for the district which covered 8 schools in three counties. Thank goodness for understanding teachers that ignored his hopping in line and repetitive coughing. And so it was that therapy ceased and A regressed. Well, maybe regressed is too strong. I guess he just stopped progressing.
A turned 9 the Spring before we returned to Washington State, leaving the Navy and returning home to the Tri-Cities. Fourth grade wasn't horrible, but I could see him fitting in less and less. He was however back in speech. By the beginning of his fifth grade year I had begun fighting hard to get him help. He had been coughing since the age of 3 and nothing we had done had ever helped at all. He was having hysterical crying episodes at least once a week, his eye contact had gotten spottier, and he was not functioning motor wise at par with his peers.
His doctor and teacher suggested ADHD, for which he began medicated . After 3 months and 4 different meds he hallucinated at 6am one morning. Screaming, crying, piling furniture in front of his bedroom door to keep us out. It was very frightening. That's the day we stopped giving him medicine. It's also about the same time I stopped writing this blog.
We had him tested for food allergies and he came up positive for more than 25, not including all their sub-foods. It was at this same time that his that his Speech Therapist mentioned Asperger's Syndrome. Being computer crazy, I immediately looked it up online was overjoyed and somewhat overwhelmed by what I found. My son fit every one of the criteria... gross motor, eye contact, IQ, obsessiveness with a subject, it was all there. I was so excited! It had a name, I wasn't crazy and overprotective, something was really wrong! But it was Autism... why hadn't anyone mentioned Autism before? Why didn't I know more about Autism? How had I, and so many others, missed something that seemed so obvious to me.
It was February of 2006 before I was able to have him officially tested by a pediatric neuro-psychologist. And what she found stunned me even more. It wasn't just Asperger's, it was also Tourette's and tremors and low muscle tone on his left side and Sensory Integration Deficit and, and, and.... How had ALL of this been missed? We took him off all medication immediately and for the first time in 8 years he stopped coughing! Somthing he had been given Asthma meds, allergy meds, and a myriad of other things for turned out to be Tourette's.
A month later I left for 5th grade camp with him. I didn't realize until the second day of camp that I was not only still in denial but still in shock also. That was the day that his group went out to the woods to learn fire building. He spent the entire hour and a half 30 feet from the group hanging upside down over a log. Amazingly though, on the last night of camp they played a Jeopardy game and he answered every question about fire building correctly. He had heard it all, but he needed to be away from the group to process it. It was so hard for me to watch how truly separated he was from the other kids. I was amazed also, and extremely grateful, at how protective they were of him.
This was the beginning of the journey for us. A journey that has taken a few twists and is no where near finished, but has brought me closer to my children.
A sister of mine, one of many, mentioned recently that I need a place to vent. Being on my computer 2/3 of the day I immediately thought of blogging and then remembered that I used to have a blog. I hadn't realized just how long it's been since I've posted. Two and a half years. And what a wild chunk of time that has been.
In the last two and a half years my family has entered the worlds of Autism, Tourrette's, OCD, intense food allergies, and extreme Sensory Integration Disorder. We have also entered middle school, begun home schooling, and seen our youngest start school. We have changed vehicles twice, jobs 3 times, and all but completely halted remodeling on our home. We have gained 3 new cousins and are anxiously awaiting the arrivals of 3 more.
Yes, it's been an interesting time for us. Now I will attempt to fill in the gaps.
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