Tag: Autism Parent

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When Your Child with Autism is Sick.

One of the hardest things for me being a autism mom, is when my child is sick.
My child has a immune deficiency that is unknown yet. So he is sick quite often.
He is nonverbal so I am constantly questioning myself. Is he ok ? Why is he covering his ears more? Yes, he covers them some already, but it’s a lot more today. Why is he doing that? Do his ears hurt? Does his belly hurt? AM I CRAZY and over thinking ?  The list goes on.
Lucky for us, we have a amazing pediatrician that understands my concerns and is great with him.
Typically, it is a fight with him going to the doctors. But she is awesome with him.
My advice for everyone with loved ones reading this, is to trust your instincts. If you feel something is wrong, go with it. Because I bet your instincts are usually right.
 
 ~ AMB
     
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A Nightmare Come True aka Autism and Hurricane Florence

If you are a special needs parent, then one of your biggest fears is chaos, I’m not talking about your child’s favorite cup being in the dishwasher, or his favorite episode of Friends being accidentally erased from the DVR.  I am talking about, not being able to plan a vacation  for fear that it will be ruined because your child may get over stimulated or have the meltdown of all meltdowns.

We this wasn’t a vacation….this was a hurricane!

Thankfully we had a few days to prepare before we were evacuated.  I stuffed huge plastic bags with blankets, sheets, stuffed animals and as many clothes as I could find.

Why would I pack everything in my linen closet and in my son’s drawers?  Because on top of being scared that we wouldn’t have a house to come back to, or that the house we were staying at may get hit harder and we may get injured. I was TERRIFIED that my incontinent  adult son, would wet through his Depends and urinate on our host’s furniture, and carpets.   Not only ruining someone else’s belongings, but running out of changes of clothes and linens that we would be unable to wash.  As well as the fear of him getting set off and being inconsolable.

So our Thursday started out with us loading our vehicles with pets and plastic bags.  I gave Buddy a bath, so that his routine wouldn’t be “off” as well as knowing it may be his last bath for a few days.

We stayed with family, so Buddy is comfortable at their home and they are familiar with him.  I brought some plastic mats that I made (Old flannel backed tablecloth cut in half and folded) and placed them (doubled up) with a throw blanket on top for extra absorption, on the couch where Buddy would sit for the next few days.

We brought air mattresses, and we took big trash bags and duct taped them to the mattress that Buddy would sleep on.  Then put a sheet over that.

I made sure he had several of his favorite belongings…pillows, toys and most important… his MP3 player,  my laptop and the Friend’s DVD collection.

Thankfully, there were no incidents or meltdowns.  We spent 6 days there and Buddy was near perfect.   I think he even tried not to pee.  There was one day that he didn’t urinate at all, which started to concern me, but he has since made up for it.  lol

I do have to say that for those 5 days,  we cuddled, held hands, rubbed heads and had some wonderful mother/son moments.

So,  90% of my anxiety was worrying about Buddy and how this experience was going to effect him.  When in fact, he was the easiest part of it all!

Safe, sound and home, in our own beds.

~ASM

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Does your child know that he/she has autism? How and when do you tell him/her that he/she has autism?

A few weeks ago I met a lady and I shared that my son has autism, she got all excited (as we special needs parents often do).  It’s kind of like finding another member of the club.  Anyway, she was telling me that her young son was recently diagnosed.  She was so happy that she finally found the answer to why her child was “different”.   She said that his IQ is at genius level, and that he was talking in full sentences and using “big” words as a toddler.  I feel sure that this child can already see how he surpasses other children his age.

I was visiting with a friend the other day and she was sharing with me that a member of her family has a young son with autism and the parents are at odds with whether or not to tell the him.  He is at the age where he is becoming aware of the children around him.

My son is 26 and non-verbal.  His last IEP evaluated him at the level of a 6 month to 3 year old.  Have I told him that he has autism?  No, I have not sat him down and said “Son, there is a physical reason that you are different from your peers.”  But we have used the words around him.  We have always discussed his autism in his presence, talking about it as if it’s no big deal.  Because, we feel that for him and us, it really isn’t. (We have been dealing with this for 1/2 my life…there’s nothing new here)

Now if he was higher functioning, and unaware of his diagnosis, I would have told him that he has autism as soon as possible.  I think it would be unfair NOT to tell him.  There must be enough questions in his head adding to his frustration and anxiety. And one simple word could ease his pain and confusion.   It’s my job to protect him, and keeping him bubble wrapped would only help me, not him.

What do YOU think?  Have you told your child? And if not, why haven’t you?

~ASM