Help
With Your Rule
When the Rules Don't Apply...
Dear Holly,
I have a 3 year old autistic son, and it has been overwhelming, to all of us, and our 6 year old is handling it as well as can be expected, but she doesn't totally understand. I guess my question is, how do rules apply to children that seem to not fit into the rules category . . . my son doesn't sleep through the night, even now I am risking being tired because he will be up soon and I just have to get some things done! He monopolizes my time when I am home all day, which is why I am a stay at home mom, but even walking out of the room creates havoc in his world . . . . I am frustrated to say the least, and then feel guilty when I want to do something for me (like the shower I am going to take after answering your email ) . . . . and then my 6 year old isn't understanding the amount of time we have to devote to her special needs brother . . . . maybe sending up a prayer for me is all I am really looking for (sigh) . . .
Labels: 4th P Parent
posted by Holly at 11:13 PM
6 Comments:
First off, I will send up a little prayer for you right away. All other readers - perhaps you could do the same and give this mom a breath of fresh spiritual air! :-)
As I read your email, the first thing that struck me is God's intent for you. God has placed this child in your care because He trusts you to do the job right. He has great confidence in you, as I believe each child is tailor-designed for each particular set of parents. God understands your trials and fatigue. Go to Him with your needs. Pray to Him. I believe He wants to come to you deeply in your family life.
Secondly, I would still be looking at establishing a basic schedule. I think this would only help the autistic child - when I worked with an autistic teenager during university, it was the routine and stability of the routine which led to a calmer autistic boy. It was when there was no routine, or things got out of sorts, that he would get really really uptight and start bangin his head against the wall...
So, start by establishing prayer time with all the family... establishing meal times and table time for him while you make the meals... establishing a story time... whatever you CAN establish, do it. Teeth, face, hair, pyjamas, when to dress, how to dress... all these things will lend order to his and your life.
Also, I would be checking around in my community and government resources for existing support systems - both re an educational format for him, as well as a capable relief worker for you. I was actually a relief worker myself, so I know they are out there.
And I would also be looking at establishing a set time each day when the 6 year old got me 'alone' and perhaps once a week where we did a short outing 'just the girls' - to show her she is still loved and special. I would be discussing this with Daddy and making arrangements with him in order to make sure this occured. There is no reason in my mind why this cannot be so.
I would also be looking at personal time in the same way - altho it may be possibly short for the time being. But if you don't get your space, you will most definitely burn out, and where will your family be then??? We all know that people who work with special needs persons need relief and support. I'd be talking to my husband, friends, family or again, looking to outside community/governmental help in some way.
Any Mothers of autistic children have any other ideas?
I am the person who wrote to Holly about "Dealing with Many Issues at Once." My 2.5 year old has been going through the process of getting diagnosed. She displays some autistic tendencies, but she will probably end up with a pervasive development disorder label because she has pretty good interpersonal skills. Anyway, I can relate to your struggles a little bit.
For a wonderful perspective on handing your daily, minute-to-minute existence over to the Lord as you deal with an autistic child, I would recommend reading a book called "Precious Treasure - The Story of Patrick" by Elizabeth Matthews. I can't say that the book gave me scheduling/routine/Rule answers per se, but it was a big comfort to read it through the lens of faith.
I hope this helps! My younger sister is autistic, and it was a huge trial for our family. I have a younger sister, too, and I think the impact was worse for her. Anyway, what I wanted to say is that usually there are programs through a school district that will help you once your child is 3. My sister benefitted greatly from Head Start, and is now living independently and going to college, more than we ever hoped for. She didn't even speak til she was 7.
Please get yourself and your 6 year old a break. It is so important, and it will help you hold your family together. There are TONS of books written on the subject, and some is good, some not as good, but all provide insight. I'm sure you've read a few already.
The most important advice I have is to provide a VISUAL schedule for him. I used a chart with velcro on it and my students took the a physical picture (laminated) to the location of what they did next, and velcroed it to the space in which they were to do the next task. Think concretized objects. They need something to see and touch. Verbal doesn't work so good til later. Please talk with a specialist about these things, there is sooooo much research out there! Use your outside resources, even though you are staying home. It is so important for each and every member of your family! And please email me if I can be of help.
amdelroze@yahoo.com
God bless you and all your efforts!
Ann Marie
My heart and prayers go out to you, moms of Autistic children. I find it difficult to be patient with my own children, and have to remember that things could be much more difficult.
I'm sure you've been given much unwanted advice with regards to your children, but I just wanted to suggest looking into the possibility of thier being gluten intolerent. GI has affected my family, and the more I learn of it, the more I am convinced its behind many problems (including mood problems that we moms have-- I was nearly diagnosed with depression because of it), and I've heard of many children who are autistic that have benifited greatly from a gluten free diet. Like I said, I don't want to burden anyone with something that seems impossible, but mabye its an answer to prayers? God bless you all for the great work you do, taking care of His most precious children.
I also would suggest that you look into the possibility of food intolerances, not necessarily as the sole cause, but as a potential aggravation to the existing Autism/PDD condition you're experiencing. My son is almost 2 1/2, and is only now starting to make sounds and do activities that he should have done months ago. I believe that he has a developmental delay that has been caused by a temporary hearing loss and recurrent illness that has resulted from an intolerance to gluten and/or dairy. I pulled both of those out of his diet around the time he turned two, and he has made some progress since then. (He also had recurrent yeast infections and eczema, which are, for the most part, gone, since I changed his diet.) I had him tested for "allergies" (IgE), and all the tests came back negative, but I have seen enough changes in him that I believe the problems may be delayed reaction (IgG) or celiac (IgA) related. I also am gluten-intolerant, and it has made a world of difference in my life. You might also check out the book "Is This Your Child?", by Dr. Doris Rapp. I have been able to find several copies in Half-Price Bookstores here (central Texas, USA) for around US$5-7. Your local library may have a copy.
I hope this information helps you, and if you'd like to email me, you're welcome to do so. You can reach me at shan@quixnet.net.
God bless!
Shannon Carter
Oops... One more thing. You might also check out the website http://www.speechkidstexaspress.com/ for books about autism. I've read "Keisha's Doors" and "Tacos, Anyone?", and they are well-written and illustrated, and may help your 6-year-old to understand better what's going on with her little brother and how to teach him to play.
You are in my thoughts and prayers.
Shan
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