couple of questions... | Autism PDD
hi, i'm new here. :) i'm a 20-something single mom of a six year old
little girl. its been a tough road, since its just the two of us, but
we have developed a good understanding of each other and i think i'm
doing a pretty good job of raising her and helping her on my own.
i'm hoping this board will be successful for me. i have posted on other
autism boards, but i have noticed that a lot of the other parents are
rather closed-minded when it comes to what autism is all about. it
looks like this board is much different than that, and i'm really
hoping it is, because i could use a little support from other parents
in my situation. i'm not saying that everybody has to agree with
everything i say, because differing opinions is a good thing and we
each know what is best for our children, but please dont jump all over
me and call me a bad mother when i have a different opinion or if i do
something different than other moms. i recently got kicked off another
board because i didnt agree with the other parents regarding one thing.
i couldnt believe it! i'm just trying to find a "safe haven" where
there are other parents who are going through the same things that i am
going through.
anyways, on to my questions. first of all, my daughter has always had
sleep problems. she would sleep, on average, 2 hours a night. her
doctor has put her on various sleep medications (it was a few years
ago, i dont remember the names) but they all made her extremely hyper.
our pharmacist suggested melatonin, and while it works great getting
her to sleep, it doesnt keep her sleeping through the night. she'll
generally wake up after only four hours, and will stay awake the rest
of the night. i took her back to her doctor after all of this, and he
said our only other option was children's benadryl. he said it was very
safe and non-habit forming. so, i've been giving her benadryl almost
every night just to get her to sleep, but its not working as well as it
used to. i have to keep upping her dose, and i'm so afraid of giving
her too much. i've tried going without it for a while, but after about
3 days she's back to not sleeping. can anybody suggest anything else?
i'd really like to stop giving her the benadryl, as it makes me so
nervous, but i feel like i'm out of options. ANY suggestions would be
appreciated.
second question: my daughter is not potty trained. believe me, i've
tried numerous times! but she just doesnt get the concept of it, and
cannot be trusted in the bathroom. the potty training isnt really an
issue, but swimming is. i have a small pool set up in the backyard for
her, and when she's swimming alone she can go with just a bikini. i
dont mind if she urinates in the pool because she's alone and she gets
a bath before bed. but sometimes her cousins come to visit and they
like to hang out in the pool with her. i cant let them swim in a pool
that she peed in! when they're here, i put a little swimmers diaper on
her, but the largest size is getting to be too tight. in another month,
she wont fit into them at all. anybody have any suggestions as to what
i can put on her, to keep the pool water clean while the other kids are
in it?
ok, i think i've done enough rambling. any advice is greatly appreciated. 
Hi Sunny and welcome to the board. First the swimming question. Unfortunately they only make those swimmer pullups for smaller kids. You could see if you could get a prescription from your doctor and check with medical supply places to see if they carry them. On the swimming pool, how big is it? And how often do you clean it? You might have to clean it once a week if this is what she is doing. Also I was told years ago to put bleach in it, since this will kill any germs and mosquitos too. Well it might not kill the mosquitos but they won't like the smell of it. Also on the potty training some of these kids never potty train, some of them can't be potty trained until they are at least 7 years old. You always have to consider where their developmental age is at.
The sleep issue. Alot of these kids do have sleep issues. You said you have tried numerous medications but you didn't name them. What other meds is she on? Could be they were counterreacting against each other. I do know with my two they will try to make themselves hyper in the evening to fight off sleep. Most kids do from what my sisters have told me. Depends on their diet too. Are they getting sugar, caffeine, chocolate in the evenings? This could add to it too. As far as melatonin, maybe you misunderstood what melatonin is for. It will help you fall asleep but won't keep you asleep. And you said she was falling asleep, which means it was doing its job. You stated that she is 6 and will sleep about two hours a night. I went thru that. I was told as they got older they would sleep more. Which is true. But I strictly limited their activities in the evenings too. After 6 p.m. we didn't do anything outside of the house. Because both of mine easily get overly stimulated.
You also stated that you used benadryl on her but she seems to be immuned to that. Unfortunately that is true. And upping the dose is not gonna make her body accept it more. Benadryl is a short term fix. She has built up an immunity to it so it is time to find something else to give her. I would suggest going back to her doctor, preferrably a neuro that has specialty in the autism/pdd area that knows about sleep issues. There are tons of sleep medications out there. Maybe they just haven't tried the right one yet. I know with Jeffrey the pharmacies here have to special order it out of Chicago. But the same med does not work on Gabe. It tends to interfer with Gabe's sleep where as with Jeffrey it helps him sleep.
Tammy
Sunny,
Welcome to the board!! I have a 3 children and am pregnant with my 4th. My 3 year old son is PDD-NOS. I agree with everything tammy said. I basically just wanted to welcome you and to let you know that here on this board everyone gives their opinions and sometimes everyones opinions are different. I don't believe that you will ever be banned here for your opinion. I hope you like it here. I'm glad you joined!!
Karrie
Hi Sunny, And welcome aboard.I am a 30 something single mom of three two are autistic anyway my 8 yr. old is just now getting pottied trained I put him on the toliet every two hours and he usually goes he is still in pullups for the accidents that still happen. We have a pool too and the swim diapers are to small so i use the plastic potty training pants the ones you put over the cloth diapers. they work good and if a little pee gets in the pool oh well, Put some clorine in the pool it only cost 1.50 a gallon at the pool supply store and will last you almost a month. About the sleeping problem my son is on CLODINE a high blood pressure pill that relaxes him and he will fall asleep and sleep all night !!!!(thank god) It is safe non addicting.My doctor will prescribe it for a year at a time. Well good luck and keep us informed !!!
thanks for the warm welcomes. :)
our pool is a fairly small pool, i guess. about six feet wide and three feet deep. i try to clean it about every 2-3 days. i just cleaned it this morning after a long, hot weekend outside. i have to clean it often, because my daughter has been obsessed with making mud lately, so the water gets very yucky. i'm not too concerned about her peeing in the pool when its just her because i like her to have a bath in the evening. i just really dont want her cousins coming over and swimming in a pee-filled pool! i'll have to try to find some of those plastic diaper covers.
i really wish i could remember what sleep meds she was on, but it was about 4 years ago and i absolutely cannot remember the names. but she only took them a few times each, because they made her unbelievably hyper. i no longer allow her to have anything that contains caffeine, except for small amounts of chocolate but usually never past lunchtime. in the evening, the only sugar she gets is from the ice cream sundae she has to have after dinner, but its not a whole lot. a half scoop of ice cream, some whipped cream, and a few sprinkles in a small dessert cup. she went on a junk food rampage for a few months, so i've really cracked down on her eating habits. she's due for another physical exam soon, i'll talk to her doctor about another med. i've heard of clodine before, i'll ask if its right for her. i just REALLY want to STOP with the benadryl! oh, and she's not on any other medications currently, other than her daily sesame street vitamin. :)
hi and welcome to the board!
You may find swim diapers that are not disposable on line or in some stores. (swim outlet.com) Usually they have an absorbant liner and a layer of plastic like material. You could make your own if you can not find one big enough by copying the materials they use in the smaller ones. I would also sanitize the pool by treating it with cholorine....you can buy it where you bought your pool.
My mother has become addicted to benedryl and has had to go through detox for it a few times. She continues to want to use it for the side affects of her other meds. so, I agree benedryl is not the best answer. I wish I knew what was! Good luck! bonnie
Just remember with clonidine, chocolate tends to interfer with the effectiveness of the drug. Gabe is on clonidine and chocolate is off limits to him. You can tell when he has had chocolate because he is hard to control.
Tammy
Hi Sunny, welcome to the board, for the sleep issue, Have you ever tried a weighted blanket? we used one with our son and it seems to do the trick. Alot of our kids have sensory issues, one being the don't know where there body lies in space. Imagine laying in bed and literally feeling like your falling thru space. Our son had no issue of falling to sleep, staying asleep was a different story LOL. once he was asleep, we'd cover him with the blanket, it's only about 5 lbs, this worked like acharm, from the first night, he slept right thru the morning, he fell into the habit of sleeping thru the night but with the seasonal change, it's been a little different, it's much easier to stuff the wieghted blanket inbetween other blankets, but anywho, mssteelersfan has patterns forthe blanket, if you can sew or you can find them on ebay or any OT/ sensory website.Hi Sunny Welcome to the board...... Here are some links to youth sized swim diapers... maybe it will help.
http://www.fishershops.com/swimdiaper.html
http://www.swimoutlet.com/Swim_Diapers_s/354.htm
http://www.pooltoy.com/spneyopopasw.html
http://www.adult-diapers-4-less.com/swim-diapers.htm
http://www.kiefer.com/Kiefer/productr.asp?pf_id=650002
As far as sleep my son takes cclonidine. It lowers blood pressure to calm them and he usually falls asleep within 45 mins to an hour as long as I keep a calm evening routine. It is out of the system is about 4 hours so you can redose during the night (with dr approval) if necessary.
Bed tents and weighted blankets have also proven to be beneficial for many here are some links........
Common Medications Used To Treat Autism
Melatonin for Sleep Disturbances in Children
SLEEP
Bed tents - they block out the outside stimuli providing a calming and quiet environment for the child to relax and go to sleep Many special needs catalogs sell them here are some links to various places
http://www.target.com/gp/browse.html/601-3573889-0737750?%5F encoding=UTF8&node=13419891
http://froogle.google.com/froogle?q=twin+size+bed+tents& hl=en&lr=&sa=N&tab=ff&oi=froogler
*** Just type in a search for TWIN SIZE BED TENTS and something should come up***
WEIGHTED BLANKETS! This has been the final thing to really help my son and many other kids here! It isnt 100% but for my son its been 98% I never would have believed if someone had said he would sleep through the night from day 1 but he did!
http://www.specialkidszone.com/Product_Level3.asp?ProductID= 1368
http://www.beyondplay.com/CATALOG/SEN3.HTM
http://www.calmcomforts.com/blanket/blankets.htm
http://www.theraproducts.com/index/page-catalog/main-8161/su b-8289/
http://www.saltoftheearthweightedgear.com/fabricspage.html
http://www.weightedblanket.net/
http://www.myweightedblankets.com/pricing___orders
Here is some general info about Sleep problems in ASD kids....
http://www.angelfire.com/tn3/task/sleep.html
http://aut.sagepub.com/cgi/content/abstract/5/2/209
http://www.nas.org.uk/nas/jsp/polopoly.jsp?d=367&a=3376 *good Info here
I hope some of this is helpful for you
wow, this is so much information! THANK YOU SO MUCH!!! i have never been on another message board where so many people were so willing to help. this is great! :)i tried the weighted blanket about three years ago. i borrowed one from my daughter's preschool. i tried it for a week but she didnt seem to care for it. but now we might have better results? i'll have to see if we can borrow one from the school again. if thats all it would take to keep my daughter sleeping, that would be awesome!
i also tried a tent for her when she was in a crib, and although she seemed to love it, it didnt help with her sleeping and she destroyed it out of pure fun. but she really seemed to do well with that closed-in feeling, so my mom and stepdad helped me to design a special bed for her, since she's too big for a crib. we took a basic wood bunkbed and put bars on three sides, so when its pushed up against a wall, its like a cage. its got a small gate attached to the front thats aligned slightly off so that she cannot open it, but with a little pressure its easy for me. she climbs right in every night, and quite often she'll lay in there for hours during the day if she's overstimulated or just having a rough day and needs some security. there is no bed on the top bunk. we put boards across it, and then covered it in berber carpet, then attached a ladder to the front of the bed. she's got her own little play loft up there! thats usually where her care bears hang out. it is perfect for her, and i never have to worry about her wandering at night when she doesnt sleep. our case manager saw the bed when we were finished with it, and loves it so much that she wants instructions to give to other parents with the same issues as us. :)
thanks again for the help, guys. i'm gonna go dig through some of those links.
Hi Sunny! Welcome to our support group! Yah you won't get banned here lol. I was banned recently from another autism board for the dumbest reasons I've ever heard. I wasn't even being opinionated or hostile or anything. You just couldn't say about anything w/out them banning you. This board is great. We respect each other's diff situations, advice, opinions, etc. Everyone here is very understanding and helpful. Best board I've ever been to even. I'm sorry I don't really have advice for you, as I have a 2 yr old son who isn't dx'd yet and I haven't even attempted potty training. But I just wanted to welcome you.
Amber
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