Autism and Down Syndrome

The special needs world is fragile, easily shattered, and it takes a tremendously strong person to weather the twists, turns, and curved balls that come with that fragility. 

You live for the most part contented, happily thinking you can conquer the world, and two seconds later--when the pharmacist looks at you and says, this medication is not covered, your son's Medicaid has been suspended, or when a care taker calls and says "I can't pick up Ben today"--panic washes over you, and you are convinced that this interminable juggle of dependent care, work, and illnesses is thoroughly beyond you, and that the Almighty's infinite wisdom failed Him, when he gave this child to you to parent.

And yet, isn't he adorable??

Then one day you wake up to an added reality. You notice that professionals, over time, more and more start hinting at you that your son "may" be on "the spectrum". 

Is he? 

Hmmmmm? 

You are a seasoned mom and you have had more diagnoses slung about you and your son than there are grains of sand on the beach. No panic there. It's just another label.

But, the seed has been planted, and you do start to  look for a few signs. 

One day you convince yourself that yes, with this and that behavior, he probably is mildly autistic, the next day because of his emphatic and mature reaction to one minor disappointment, you convince yourself that he could not POSSIBLY be autistic. 

Then the busyness of life overcomes any concern for such trifles as sticking a new label on the specimen that your son so often has become... in fact, the thought of autism, Down's, dysphagia, and the numerous medical conditions that continuously plague him... who cares?? You have other fish to fry. He needs to get in for that dental cleaning, rehab needs to fit him for new braces for his feet, you missed the orthodontic appointment because of traffic last week, and of course, you never rescheduled opthalmology when the doctor canceled the appointment because she broke her leg skiing. Also, your son needs a new glasses prescription... and wait!!!... when WAS the last time you took him to audiology and had his hearing aids serviced?

Autism --- it's a good question. 

There is no doubt in your mind that his emotional trips, every time his routine is broken, every time people laugh around him, every time certain persons go near him ... those emotional trips are time-consuming, you have no real means for curbing them or helping him cope, but you kind of got used to them, that is just him, and really, rehab, ophthalmology, orthodontics, to say nothing of that annual orthopedic Down's eval that you forgot last year... those things come first.

No, I am not a procrastinator, at least I put off thinking that I am one :), and I am fairly organized and on top of my son's diagnoses and appointments most of the time. He functions well --some of the time-- and he has severe behavioral issues at other times. SEVERE. Like the day he darted out of the house into traffic... in a rage... unstoppable. He sometimes hides from people, like at Thanksgiving when he hid in the pitch dark, behind a wood shed at a friend's house, and we had to send a search party out to look for him. 

 Autism may well be the next bend our in road. Increasingly, it feels and seems real enough. And if it is, let's just embrace it and move with it.

He has many risk factors. For example, he was born with cleft lip and palate, he has a swallowing disorder, he is hearing impaired, in short, his communication skills, both receptively and in terms of his own output are limited. He has experienced some stress and trauma in his life.  And he does have  significant repetitive motor behaviors, unusual vocalizations (usually grunting and throaty noises), feeding issues and sensory motor issues, as well as increased anxiety, irritability, severe difficulty with transitions. He has an extreme aversion to certain persons and will not even talk to them. He talks to walls and refuses to engage people or make eye contact any time there is even the smallest conflict (whether it involves him or not). And he repetitively generates calendars through 2014, 2015, 2016, 2017 for a hobby in most of his spare time.

And if it be so, if the label autistic is about to be slapped on his forehead, so be it. Whatever he is, that is him, and that is precious and worth cherishing, and if the behaviors we already live with are mildly or moderately autistic, then let us embrace the label and pray that it will lead us to discoveries that help us increase Ben's potential to live a fulfilling life and function better in the company of others.

Merry Christmas :) We're on to our next journey in life, wherever that takes us. May God go with us.

2014 with Ben

... and what a year it has been. I have had to ask Ben to promise me never to turn 18 again. (And he agreed.)

Ben is a junior in high school, an accomplished artist, both in graphic arts and in pottery. He loves to hate the frustrations of bowling without bumpers, he adores his iPad 4--especially its movie feature, and this year he fell in love with Despicable Me I and II and the Minions that go with it. 

So much of what went into Ben turning 18 was 'about' Ben, and about the services he is to receive, first as a young adult (18-21) but also about life long services and service levels that were established in the multiple meetings that he and I attended in order to determine which services he qualified for.

What was hard about the process, apart from the tiresome felling running a metaphorical marathon in chilled molasses, were the meetings that involved Ben. On four different occasions we met with persons from the county long-term disability intake people (IMAGINE!), the court visitor, and the social security administration, essentially to establish what Ben CANNOT do,  I understand the deficit model is a vehicle for establishing needs and subsequent services, but I regret Ben having to listen to a long line of questioning which one of necessity must answer as if it were the worst day of Ben's life in order to establish a life-time service level that will adequately meet his needs, even on the worst day of his life. 

Looking back, I should have brought ear buds and iPad (with movie + games) to the four intake interviews, so he would not have to sit and listen to litany after litany of what he cannot adequately do. I caught up to that fact at the last interview with the court visitor.

At each interview, he was required to be present, and since they were in close succession during the fall, I had a significant amount of emotional fall out to deal with from Ben after each process. 

Ben is generally "happy" exactly in the sense that we, the public, like to think about Down syndrome happiness. However, that general 'happiness' is surface and good social skills combined. It is difficult to have Down syndrome and know you are different, and to hear the deficit model applied to who you are and what you can do and how you are when you are at your very worst behavior, at your least competent moment, and to hear it over and over again in 2 to 3 hour long meetings, discussed every time by your mom and two or three other professionals, some of whom you know from school can be crushing. 

That being lamented, we succeeded in securing long term care Medicaid services for Ben, both in terms of respite care after school and also in terms of day programs for the summer and for when Ben is done with school. Many triumphs came out of the August - December seemingly endless process of wading through state and federal services for Ben long term. Ben was a Level 6 (the highest in the state) in terms of his needs assessment, and he is awarded $36,000 of respite, day program, and behavioral health services per year towards meeting his needs.

Instead of me spending out of pocket cash to secure after school services for Ben so I can finish up at work, he will now be in Out and About as soon as their waiting list dwindles down, and that group takes persons with intellectual disabilities 'out and about' in the afternoons after school, to swimming, art, theatre, and bowling.

He will also be in FRIENDS OF BROOMFIELD during the summer for a 9-3 day program where he can take Access-a-Ride  (public bus for special needs) to the day program, so he will get a sense of independence in going on his own and coming home on his own. 

At any rate, the end of a long semester, and  I have a significant part of the year of turning 18 moving in the right direction. 

I look to 2015 to 
1. finalize his SSI and actually getting that income for him
2. getting a court date and finishing my case to get guardianship for him
3. getting off the waitlist for Out and About and having those neat afternoon experiences for him after school
4. getting a comprehensive eval of Ben and the autistic spectrum issues.

Merry Christmas :)