Welcome To The Jungle — a window into our lives raising Kyle…
April 21, 2011
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Now Reading: Welcome To The Jungle — a window into our lives raising Kyle…
April 21, 2011
We are in the process of applying for a Medicaid Waiver. Part of the process included my wife writing a letter explaining why our case is an EXTREME case. I’ve attached excerpts of the letter below. I don’t mean this to be a downer. I just want you all to get a true picture of Kyle and our crazy lifestyle with him. My original name for this Facebook Page was “Severe Autism Dad” because autism is such a wide spectrum I wanted people to know what they were getting into, but that name sounded a bit harsh so I switched it to the soft & cuddly, “Autism Daddy.”
Anyway, read excerpts from my wife’s letter below and welcome to our world…. 🙂
BEGINNING OF EXCERPT
“…My 7 year old son, Kyle has severe autism as well as severe ADHD. He is non-verbal and has trouble retaining learned tasks. He is not potty trained and has a very short attention span. Kyle needs assistance for everything. i.e. Eating, sleeping, pooping, dressing. He has no formal method of communication.
Being home alone with Kyle can be quite challenging.
Kyle does not understand danger. When in the home, if I leave him unattended for more than a couple of minutes, he is usually into something i.e. Reaching for the lightbulb on our only lamp, turning the hot water on himself in the shower, eating soap, climbing etc. This makes everyday tasks such as cooking and cleaning very difficult. Also, as a result, many expensive modifications to our home have been made & continue to be made according to Kyle’s whim. i.e. We have installed overhead lighting in every other room, alarms on doors, home security system etc. A sensory gym of sorts has been created for him as well including an indoor swing. Due to Kyle’s short attention span, home activities are extremely difficult to execute. Reading him a book is a great deal of work. Getting him to sit for meals or any attempted constructive activity requires much patience, diligence and creativity. On the bright side, Kyle is beginning to be open to letting me teach him some self help skills like putting on socks and putting his shoes away. It is important that we practice these types of skills everyday in order for Kyle to retain them but it’s often difficult to do with consistency.
Kyle has also developed self injurious behaviors which have resulted in medical issues:
*Head banging = eventually needed an MRI & catscan for a bump that developed in a vulnerable spot & never went away due to repeated trauma. Kyle had to be sedated for this.
*Hyperventilating / heavy breathing / holding his breath (for most of his awake hours) = at it’s worst he needed a chest x-ray per his doctor to make sure his lungs were clear & his heart was ok. He also had to get extended blood work due to the CO2 levels in his blood being alarmingly low resulting in fainting, dizzy spells & balance issues. Physical issues had to be ruled out before determining it was a behavioral issue. Kyle missed a lot of school as a result. Also, since Kyle cannot stay still for more than a few seconds at a time, all of these tests were extremely difficult to get through.
*Refusal to eat…along with the heavy breathing caused Kyle to lose 5 pounds last year (10% of his body weight). Although he is growing taller, he has still not gained back the weight. (Kyle’s pediatrician has been very concerned about the breathing & weight issues).
*Picks at his skin… till it bleeds & doesn’t give it a chance to heal. Won’t keep a band aide on. Scarring. (I just throw peroxide on them & apply neosporin when he sleeps because otherwise he may lick it off).
Additionally, Kyle has stomach issues that have sent us to various specialists. These specialists often do not take insurance & are only partially covered. We must keep up with probiotics, stool softeners etc. This sometimes can take up a good part of our day. At times Kyle has gotten 2-3 suppositories per day to keep him from pain.
Too many to list…
constantly plays with saliva, spits, throws everything on the floor etc.
My way of managing all of this is to keep him engaged in constructive activities. After school Kyle goes to OT 2X a week, he has ABA at home 2X a week and is in an after school music therapy program 1X per week. This is not including weekend activities. We try to keep our costs down by being involved in funded programs but it is not enough. Financially, we will not be able to keep these services up for much longer.
My husband and I both have many stress related ailments including depression, anxiety, debilitating headaches, backaches, general fatigue etc. As a result we have both gone on anti-depressants / anti-anxiety meds to better cope with our situation.
Last but not least, my husband’s role in taking care of his parents has increased dramatically. My father-in-law has advanced Parkinson’s and dementia. He has recently entered a nursing home which keeps my husband away more and more. Also, his mother, who has recovered from breast cancer and a brain tumor, is now living alone and he has taken on responsibilities such as bill paying, snow removal, repairs, doctors appointments, filling prescriptions etc. This often leaves me on my own to manage Kyle….”
END OF EXCERPT
That’s it in a nutshell folks! I will admit that my wife exaggerated our situation a little bit to make our case sound a bit more extreme for the Medicaid Waiver folks…. but trust me she didn’t exaggerate that much.
But just so this isn’t too much of a downer, through it all Kyle has an AMAZING personality that shines through He has a smile that lights up a room and is the type of kid you just want to squeeze.
I guess I just wrote this so you know where this page is coming from. This is a severe non-verbal autism daddy page. My wife likes to say, “We’re here! Severe! Get used to it!”
Written byFrank Campagna
I’m a 48 year old neurotypical dad with a 14 year old son with severe, non-verbal autism & epilepsy. I created this blog to rant about autism & epilepsy while celebrating my son who I affectionately call “the king” :-).