Thursday, April 21, 2011

Welcome To The Jungle -- a window into our lives raising Kyle...

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....  :-) 


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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).
 
*Grinds teeth.
 
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.
 
Stims:
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
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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!"

8 comments:

  1. I always encourage parents to go by " worst days" basis when completing paperwork on their child. You feel nasty doing it but other wise applications can be refused or put on a very long waiting list.

    I have been told of parents keeping their kids up late the night before or not medicating them on the day of assessments, because we all know there is nothing worse than attending an assessment and your normally hyped up monkey is siting like an angel and obeying like one too lol.

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  2. Tough to read. We are having a lot of trouble with my son's skin. His mild to moderate eczema has ballooned into scabs all over his body that he picks at. His ankles look like raw meat. Do you have any ideas how to combat this? Thanks.

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    Replies
    1. We had all the creams and the ointments, still use them, but best thing by far I found for my sons (who has non-verbal Autism) skin problems is to pour a cap of ordinary household bleach in his bath..then get him out and get the hydrocortisone ointment on while hes still damp. Magic cure for us.

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  3. Okay... I read it! Going back to read http://autism-daddy.blogspot.com/2014/04/progress-kyle-off-from-school-wife-i.html now! :)

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  4. My wife and I can relate with your situation very well as we to have a 7 year old son with severe Autism, ADHD,and other heath problems. Our live is very much like your wife described it to be in her letter, it is a different thing every day. we can not leave our son unattended at all or he will be into something before you can blink your eyes. My wife and I to have health issues, I am 62 and my wife is 53 and it is really hard at our age to keep up with our son but through God's grace and Love we manage. We can also relate to your finance problem as I am on Disability and it is no where near enough to get the things that our son needs to teach him with and to train him every day functions. I am glade you put this blog on Facebook so that everyone can see just a touch of what it is like raising an Autistic child who can not do anything without assistance and that is nonverbal, that alone can make his needs a guessing game. THANK YOU

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  5. I am not expert, but I have read a great deal about this and have some personal contact with people that deal with this a lot. Have any of you tried an IGG test to check for food sensitivies? We do have personal experience in which our son was showing signs on the spectrum and skin rashes that would not go away- we did the test and started cutting out gluten and chicken eggs (we were able to replace them with duck eggs luckily) and it has been a night and day difference for us. I don't expect it to resolve everything for everyone but I was skeptical going in but was willing to try anything and it worked. It takes about one month for the foods to get fully out of the system so if you are willing to try it first do the test to see what is causing the problems- pick the biggest offender (as the list for us anyways was really long and overwhelming) and work your way into it one at a time if necessary and remember that you need to give it at least a month. Also, you have to be strict about it or it will not work.

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  6. This sounds like my "king." He turned 8 two weeks ago and your letter fit him to a tee. Thank you for sharing this and so many of your experiences. Knowing that we are not alone in this journey has been life changing!

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  7. My daughter is six and is considered to have severe autism. . . She's nonverbal but within the last year has atleast wanted to repeat some words periodically. She is able to retain information and learn, she can read though we don't know how much. She became potty trained right before bet 5th bday, but doesn't grasp the need to wipe. We are grateful for the progress and hope for more because it's scary to think that she will rely on someone else for her needs after I'm gone. I take it day by day but it'd be nice to do normal things that family's can do with no fear of meltdowns where she drops to the ground and is dead weight and crying with peoples stares. Anyway it's nice to know that there are other parents out there too though i wouldn't wish this on anyone. Autism is lonely and overwhelming, thanks autism daddy for writing your blog. It does help.

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