I am sad and confused - Autism Spectrum Message Board

sue2ndtimemom · 05-01-2009, 12:30 AM

I have a beautiful, sweet son who is 8 yr. old and has severe autism. He loves to hug, kiss us on the cheek and is very cuddly. He is non verbal and not potty trained but he has great comprehension. His eyes speak volumes and he is very intelligent. On the flip side he is extremely destructive, covers the house in poop, trashes the house, gets out of the car seat and kicks me in the head when he's mad and is very strong willed. Non of these things have caused me to feel as desperate as I do now. My DH had a stroke last week and his right side has no movement though he can feel everything that touches his right side. He will be in a Rehab facility for 3-4 months and may or may not be able to walk again. I'm on Disability and if my FIL were not helping us we would be living in my minivan. I have a 9 yr. old that helps with my autistic son David, but he is only 9 yr. old. Some mornings when David doesn't want to go to school he will lay on the floor and go limp and sometimes won't let me give him meds either. He's 115 lbs. and tall for his age and I have a really bad back and cannot lift him. My FIL has been helping me when he can but he is 78 years old and can't handle David for very long either . My DH is 52 yr.s old and fell last year and lost some of his strength. Since then he has had trouble tackling David when necessary but he was still doing it. Now with the stroke, he will possibly never be able to help with David again. The fact is I can't control him when he doesn't want to be controlled. He is cooperative probably half the time but when he goes limp on the floor I can't pull him up.

I called the Regional Center and told them that I can't handle him and that we need placement for him. The case worker said that maybe by Monday they can have him placed in a facility. My DH and I have talked about this as a possible eventuality but I thought it might be years down the road. Both of our fathers and another dear friend have been telling us for over 3 years that the day may come when he might have to be placed but at that time I wouldn't even entertain the thought. My heart is breaking. Everytime I look at him I cry. My 9 yr. old is acting out (can't blame him with all this going on with 2 members of our family) and has even threatened to go crazy and lose it . Our house is full of sorrow but I honestly can't handle him by myself. All of my family are out of state and my DH's Dad is 78 yr. old. All of my friends live about 45 minutes away and have a lot going on in their lives too. Please if anyone responds be gentle because I'm hanging on by a thread.

Mira11 · 05-01-2009, 01:35 AM

Sue - I am so glad that you found us. I have a 21 year old son and have seen a lot of circumstances with families with kids with autism and we too have been on a roller coaster ride at times. There is NO QUESTION in my mind that the best thing for your son and your family is for you to proceed to do a placement for him at this time. From what you are describing, this has become an unsafe situation for everyone and it is FAR BETTER to do the placement before anything tragic or very damaging occurs.

As I started reading your note, I right away was going to suggest getting linked up with a reg case manager and request an emergency placement. Then I saw, it's already in the working. It's not like you won't be able to see him, because you will. You ALL need the help that you are requesting. I hope that your husband does well in rehab and shows good improvement.

Please keep us posted about the placement and I'm glad you found this board.

MOM23ANGELS · 05-01-2009, 03:29 PM

hello sue,

as i read your post it took me back a few years as i have a cousin who was placed in a home. the scenario was somewhat similar in that it was getting entirely too difficult to care for her at home. as a parent, i know this is a very difficult decision but rest assured the BEST decision. you must think of the health of your entire family, and recognizing that, was the first step.

my cousin has been in her current placement for at least 15 years now and let me tell you she is getting along beautifully. she is in a house with 8 others. she goes to a wonderful workshop every day and goes on more outings than i could wish for. her diet before placement wasn't the best as my aunt tended to allow her to make her own food choices and usually not the greatest. she eats 3 well balanced meals and healthy snacks everyday. they eat "special" desserts a couple of times a week. (usually a piece of cake or pie) she also comes home for holidays and 2 weekends a month.

another thing to think of is the fact that you have a say in his placement. so many people do not have an advocate in their corner and are not placed appropriately.

good luck and stay strong.

boysboysboys · 05-05-2009, 12:50 PM

How are you doing Sue?

When I read your post a few days ago I got tears in my eyes. I have twin 6 year olds who both have autism and there are days when I feel like I may have to put them in a home. I have been thinking about you a lot the past few days. I hope you are doing okay. It could end up being one of those things that turns out to be better for everyone in the long run, though I know it must be extremely difficult right now. Hang in there....*hugs*

Mira11 · 05-05-2009, 04:25 PM

Sue - have been thinking about you today and hope that things are all right in your situation now. Has there been any more word about a placement? Try to think of it as taking one step at a time to get to a needed better and safer life for you and your family.

Let us know how you are.