Any Moms of Autistic Kids Out There? We Need Each Other!

Updated on November 27, 2010
W.T. asks from Scott AFB, IL
10 answers

I would like to talk to any moms out there who have Autistic kids. I have a 5 1/2 yr. old girl who is Autistic and non-verbal. We have faced a lot of struggles with her. (Picky eating, using the potty, etc......) Most recently she has had A LOT of trouble sleeping, and ABSOLUTELY refuses to sleep in her bed. She comes out and sleeps on the sofa with ALL the lights on. I have never thought she was afraid of the dark -at least she can't actually tell me. This all started in mid Aug. after we took a short trip, and had to spend a couple of nights in motels. Recently we have been making her go to sleep in her own bed when we know she's tired. (One of us will sit by the bed and not allow her to get up). She gets very angry, and cries a lot. We want to get her back in the habit of at least falling asleep in her own bed. She still comes out and sleeps on the sofa when she can't sleep -and it seems she can NEVER sleep through the night. We have been giving her melatonin for some time. Things were so bad for a while (when I say bad, I mean that she would be awake for 4 or 5 hrs. in the middle of the night not being able to get back to sleep) that we tried giving her prescription medicine. Well, that DID NOT work. It had the opposite effect, in fact I think it made her jittery. We are not doing that anymore. Does anyone have any advice on how to get her to stay in her bed when she wakes up at 1 am? Thanks!!

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Featured Answers

T.N.

answers from Albany on

Will she sleep on the sofa through bthe night, or at least for longer periods of time?

Considering her over all well-being, if this works, then go for it. If she needs you in sight, can you set up on another sofa in the same room, or use a blow up bed or move a mattress and sleep?

Wherever she is on the spectrum, you'll always need to consider other alternatives to the 'norm'.

In this case, whatever gets you through the night, as the song goes, is all right, it's all right.

You are not 'spoiling' her.

Meanwhile, keep trying to get to the bottom of why she suddenly soesn't want to sleep in her own room.

And always listen to Martha's advice, she's a genious!!!tehehe
Have a great day, hope you get some rest soon!

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J.F.

answers from Philadelphia on

I have an 8 year old daughter who has Autism. My daughter is verbal, she refused to sleep in her bed till about a year ago and she till will come in our bed and my husband moves to to her bed sometimes 3-4 times a night. I know I am VERY lucky becasue I have heard similar stories.

My only advice is get in touch with your local Autism community, even just talking to local moms and dads is helpful. I really hope you can get some rest soon! Good luck.

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A.B.

answers from Washington DC on

Some parents swear by eliminating gluten and sugar, replacing with brown rice, rice pasta and maple syrup. No dairy. Getting exercise. Supplements under supervision of a licensed naturopath/nutritionist. Making sure your baby has a good waste elimination schedule, and lots of water. While not autistic, my children are a bit unique and have needed speech. Both have very weird sleep patterns. Tend to do better when we are away from home and have more regular exercise and less electronics (TV, video games, etc.). We restrict amounts, but sometimes, there can still be too much stimuli at home. If this sleep disruption is new and started after vacation, might take a little time for her to get back to her sleep schedule. If you've had her on a strict schedule and changed away, give her some time to readjust. Or, if she's able to sleep on the sofa but not her bed, I'd check her mattress. Have you flipped it? She could be sensitive to the springs after sleeping on a softer bed in mid-August. My daughter had problems sleeping in her bed until we added a mattress pad, cover and higher grade sheets and pillow cases (400 count)--go to Big Lots or catch a sale. My son also liked his bed better and was able to get deeper sleep when we added a mattress pad. Just make sure you air it out 24 hours before putting it on the bed or find one that's hypoallergenic, if possible. If problem persists, discuss with her pediatrician. And, if it's the darkness bothering her, add a lamp in her room or leave on the hall light so she has some light coming into her room. As for stimulating language, do you read to her? I know she's so much older, but sometimes, they still need that face-to-face communication for comfort and modeling. Try also play therapy. Playing with puppets, dolls or games like Candy Land or Chutes & Ladders might be nice. Art therapy is also calming and can help stimulate language. Finger paint or playdough, perhaps? Making clay from scratch was also fun. Not sure of the severity of her autism, but you could research more. Also, see if you have a chapter of the ARC in your area. They offer great support workshops for parents with children who have autism, etc.
FOUND THESE
The Arc of the Virginia Peninsula: www.arcvap.org; 2520 58th St, Hampton -###-###-####
The Arc of Greater Williamsburg: www.thearcgw.org; 202 Packets Ct, Williamsburg - ###-###-####
The Arc of the Virginia : www.arcvap.org; 6871 Main St, Gloucester - ###-###-####

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L.M.

answers from Washington DC on

You have gotten some articulate responses so far. I have a couple of things to add. Good for you for letting go of the Rx meds.
I would also encourage you to look @ alternative medicine. Specifically chiropractic care. There have been very good results especially with sleep, and also with assisting autistic children. Diet is also key, gluten, dairy and processed sugar. Watch out for the pesticides as well.
A naturpath would be a good place to start.
L.

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M.R.

answers from Columbus on

Hi W.!

I have two on the spectrum. Sleep is an issue for us too, and for most kids with this issue. We have had the most luck with medical care from psychiatrists, we see one who is very avalaibable, if we have an issue, we can usually get in that day. This has been a God send. Our youngest was nonverbal until she really started sleeping. She was put on clondine for sleep at age 3, and her speech started to take off once she did not wake every 45 minutes to check on where I was. She still would rather sleep on the couch than in her bed, and she is now 11. I have a friend who even got rid of her autistic childs bed because he never slept in it, he sleeps on the couch. So, I guess what I am saying is get some really good medical care because this is part of the issue, and try other things if one prescription did not work, there are others that my help. That, and if sleeping on the couch works, it may just be worth it to go with it. You do what you have to do, and sometimes (though it may not be how you thought it would be) you live with life the way it works best.

I feel for you. Sleeping will help you deal with her better too. I have so been there, but from where I sit, it does get better with age.

One suggestion, we have locks on our doors that she cannot undo. It is a saftey issue, because she could leave the house in the middle of the night. We use the push bar, really high and out of her reach. Another solution is an alarm.

I hope you get some rest, and I hope she does too. You will be very happy with her progress once she sleeps more too!

M.

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A.S.

answers from Boca Raton on

This will not answer your question - just a thought: have you ever tried an integrative physician to see if you can get some forward progress on her total health?

You might see if your library has a book by Kenneth Bock, MD - "Healing the New Childhood Epidemics . . . " There you may find a good springboard for further discussion and investigation.

Integrative docs tend to be very expensive. That being said, we made little/ no progress with our child's issues (not autistic but TONS of allergies) until we went that route.

Also, I have heard that there is time-release melatonin (though I have never tried it). As with all supplements, I always go "low & slow" and generally do lots of research first (including consultation with experts when necessary).

Good luck - you are grappling with an extremely difficult issue that must affect your entire family. My heart goes out to you.

PS: I am not a health care professional of any kind - this is just my mom opinion. Please seek out qualified professional advice.

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C.

answers from Hartford on

W.,
It sounds to me like she developed some anxiety while on the trip that now interferes with her sleep. Have you tried all the usual things for typical children (no snacking or drinking before bed, an established bedtime routine, ...)? I would try the typical stuff first and, if that does not work, try to figure out what is causing her anxiety. Does she have some time of a reward or incentive trigger for good behavior that she can earn after staying in her room all night? Maybe it is time to change her room around. Perhaps she could draw a picture of her dream bedroom and you can try to make it a reality. Would you be opposed to making the couch her new bed and adding some lamps? Maybe those items are giving her some comfort. We do some crazy things for our autistic kids which, unless you've been there, are hard to understand to the outside world. I know it is frustrating and challenging, but hang in there - you will find something that works.
Good luck,
C.

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N.B.

answers from Washington DC on

Dear W., I cannot help you personally, but maybe you can get some answers from the National Autism Association and/or autismclassroom.com. Good luck to you!

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J.L.

answers from Minneapolis on

j

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D.P.

answers from Las Vegas on

wow I feel for you. We are in a similar situation, but our son still sleeps in a portable crib. He is 3 1/2 and no matter what time he falls asleep he wakes up at around 1 or 2 crying really hard. The doctor suggested night terrors and prescribed valium, but that did the opposite and it was like was stuck in a half awake/half asleep mode. We've tried to let him self soothe and leave him alone for 20 min or so, but he just cries harder and gets more upset. Finally we end up turning on a cartoon for a little while just to calm him so we don't get too upset. And like your daughter, he'll stay awake for hours at a time. You do what you have to. We've tried perscriptions also, and they seem to do the same for our son as they do for your daughter. He seems to get drowsy, but then delirious, and jittery and it takes hours for it to wear off. They make beds for Autistic children if you look it up online. They are like giant cribs with high sides and locks, but they are in the 1,000 to 3,000 dollar range. Pricey! It might be worth it though. Good luck. I wish I could help. I'd like some tips too:)

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