how to deal with a child with; autism, sleeping disorder, eating disorder and needing constant attention

Trudie - posted on 09/22/2010 ( 42 moms have responded )

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hi my name is trudie and i am one of those parents that has a 3 1/2 yr old little man that has issues. he can be such a beautiful boy and very affectionate when it suits him.
my son corey is going to the autistic clinic at the end of the mth for final assessment, all the specialists have said that he is high functioning autistic. my doc said adhd..i will wait and see after all tests are back with their diognosis.
A little back ground info about us in the last 6mths....
i had to leave my job to look after corey full time (i was a director of a child care centre and with corey being in my office ageat deal, signing up to 20 accident reports a day due to corey hurting other children and having none or little sleep each night,i really was not doing my job properly and it was not fair to everyone - especially corey. so i am at home now).
My 15yr old daughter has started dating and also started a part time job. and most recently
I have had 2 lots of surgury from Superficial spreading melanomas; one was a level 2 and another a level 1, all on the one leg.
so lots has been happening in my house hold.
corey has improved a great deal since being at home
- he sleeps 7hrs now (just the wrong time of the day 3am to 10am on a good day) he used to sleep 4hrs be up for 4hrs and sleep 4hrs like an infant. when awake full of energy and needing attention 24/7.
-he talks now - using sentences. 6mths ago was using one word at a time and even then nobody could understand him.
-his aggressive mood swings are becoming alittle better towards family members now.
-his diet is really bad - he smells and touches everything and majority of the time refuses to eat what i give him. doesn't eat meat, veggies, or fruit i have him on multi vitamins now that he actually will eat.
IS IT NORMAL FOR AUTISTIC CHILDREN TO - eat a whole packet of biscuits, a whole tub of yogurt....my son does everything either in 5's or all, 5 nuggets, 5 slices of bread and above.
thank you for listering - sorry if i sound perthetic - i am struggling, but i will get there.
THX

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my son was diagnosed with ADHD first and then NVLD, then PDD-NOS and then Aspergers (high functioning autism) I am so glad that you are catching it young! My son was 9 or 10 when they finally diagnosed him. He still hates anything he has to chew a lot. Celery, peanut butter, cheeseburgers... though occasionally he will get hungry enough to eat some of them. There are a ton of support groups out there for these kiddos and their parents. Yahoo is an awesome source - or the Autism Society of your town or closest city. You are going to find that a lot of these behaviors are common among these kiddos, and that sometimes the only way of getting through them is to breathe your way through it. Deep Breaths!! lol My son will eat this and not that. He used to run across my living room and slam himself into the wall so hard he would literally bounce off the wall. I was so afraid he was going to hurt himself or bring my house down. lol Aggression can be a common trait, and that is one you just have to repeat yourself on often, repetition is key for these kiddos! There are all kinds of therapies and support out there. Once you get the diagnosis, ask for help getting a dietician that can help you try a gluten free diet. Sometimes that helps, sometimes it doesnt. Your psych dr should be able to direct you to get a TSS, BSC, Mobile Therapist, and help getting your corey Occupational therapy. There are speech therapists too! And they all can come to YOUR HOUSE! (which is a huge blessing in saving time - and avoiding the whole 'change' issue.) With these kiddos routine is a blessing and changes = challenges. But there are resources out there that offer help like picture calendars for instance, so they can "see" what is coming at them that day! Its not a death sentence. Its just means you gotta a little more work and many more lessons in patience ahead of you. And dont let neuro-typical parents tell you how to parent your child. ONLY YOU know how to do that best!!!! Best of luck to you and your son!

Jen - posted on 10/06/2010

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Hi Trudie,
I live in Australia and my 11yo daughter is on Melatonin in liquid form. It is only available on prescription in Australia (our pediatrician writes the scripts for us).

I know exactly how you feel. Cass didn't sleep much at all.....didn't fall asleep until midnight or later and then had me up at least 4-5 times each night. By the time she was 7 I was exhausted, suffering depression and considering suicide. It was then that we finally had her diagnosed and put on medication to help her sleep. It went against all I wanted (or didn't want) for my child, but it was a lifesaver for all. After 4 years if she doesn't have the meds we're back to the non-sleeping pattern.

We also have issues with eating, although I think this is more related to the Risperodone increasing her appetite. But I think it's better to face that than an aggressive, unco-operative child.

Good luck getting a final diagnosis. You are the one who knows your child best...therefore you are the best advocate for him. Keep fighting. It's well worth it in the long run.

Tina - posted on 10/05/2010

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My doctor told me to give my then 8 yr old OTC Melatonin- no RX required and it helps tremendously. After they take it for awhile sleeping becomes habit and many times you can stop giving it to them and they continue to sleep well. It is sold at wal mart and wal greens etc.

Esther - posted on 09/28/2010

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trudie yor not pathetic just overwhelmed and yes my daughter was like that she would only eat mustard, eggs, or bolgna sound like asp to me but the docs will tell u best. as long as your sone has liquids and eats some thing he's fine. he will get better his behavior that is as he grows my daughter who is 15 now was a handful back then. when you know better you do better the past is just that your past and move on taking care of him the best way you know how.

Lisa - posted on 09/28/2010

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my daughter just turned 5 and eating is the most difficult think...tantrums at dinner table ..from the sight, smell..etc.. she has SID gooing to a resturant is out of the questions...she only eats Mcdonalds fries..if they are hot she freaks..if we bring them home she wont eat them due to they are cold...she will eat ONLY pizza hut personal pan cheese pizza in the box..ugh

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Patrice - posted on 08/19/2012

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My son trenton sounds a lot like your son. he has a prelim Dx from his Ped. of PDD and is being tested further in Sept. for ASD,seizures,etc. he will only eat nuggets and fries prefers mcdonalds but he will smell and touches other peoples food. he is non verbal and his sleeping habits are horrific. if he is sleep before the sun comes up its a miracle. he went from being your "normal" 18 mo old to losing everything (speaking eating,reg. sleep)by the age of 2. you are in no way pathetic and are doing everything in your power to help your son. good luck and you are not alone.

Stephanie - posted on 07/28/2012

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This has. Been very helpful.ive taken my son to his doctor many times for issues that I've have felt are not normal for a child his age. He won't eat he won't sleep at night his temper and ect.. The doctor blows off what I say. I've menton autism and he said it can't. Be that he shows emotions.. I'm now going to take him to specialist and go with my gut feeling .

Angela - posted on 10/08/2010

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my sons eating has changed lately also.. he was always picky, then not then picky again.. now no meat.. prefers crunchy and spicy and anything with PB&J almost..lol

Angela - posted on 10/08/2010

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i was told that u can get melatonin at a drug store over the counter .. no prescription..

Sara - posted on 10/07/2010

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No...you don't sound pathetic! We can SOOO relate! Our son was diagnosed when he was 3& 1/2 and regressed after he turned 2, losing all language (30 + words/phrases) except 2 phrases and withdrawing completely. Many people find that their children only want to eat certain things. My son is adamantly opposed to anything green (even green candy), and used to love goldfish and cheese. We discovered he was sensitive to wheat and dairy and after removing them, behavior issues, rashes, and irregular bowel movements improved dramatically. After removing individually removing wheat and dairy, we decided to go Gluten Free and Casein Free and he continued to improve eye contact, behavior, and language. We have worked to expand his diet by putting foods into new forms (spinach in his fruit smoothie, flax seeds and pumpkin into his waffles, etc.). I have learned you can grind up almost anything and hide it (starting with small amounts to get his taste bud used to it) in some form he will eat (spinach brownies, salmon patty pancakes, nut flower waffles, nut and grain bars with a little GFCF chocolate chips). I do make most of his food from scratch, so it's not always easy, but he now eats very healthfully and continues to improve. His biggest junk food item is tortilla chips (favorite!!!).

He has been to a special school for children with autism for over a year, and we have learned so many strategies to use at home for getting language and teaching skills and directions. Sleep has also improved so much with the above, but even more when we removed his daytime naps and implemented a strict bedtime routine including relaxing music to fall asleep to. When he does wake up in the middle of the night, our pediatrician has okayed using 1 mg of melatonin to help him fall back to sleep. He jumps into bed now when we show him his PECS picture of "bedtime." Visual cues have really helped him understand and retain langauge as well as decrease resistance to certain parts of his daily routine. His response even to his least favorite routines seems to be, "Well the picture says it, I guess I have to..."

Hang in there! You are not alone....Let me know what you find out from the doctors. We are blogging Jackson's journey, with the hopes that someone else will find something useful in what we've tried and feel renewed hope. Our blog is www.findingjackson.com

Wendy - posted on 10/06/2010

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Yes it's normal.. I don't really think that's the word, but it's very common in ASD kids to do things like that. There is a new study out claiming, ASD kids have an addiction type mode to certain foods. things like gluten and another one. There is a diet called GF/CF, basically the way the food works, your child likes things doughy, breads, muffins ect, because the combo of the g and c act as a drug in their bodies. So it's not that the child doesn't like fruit n veggies it's just they don't get the same type of high from it. When they have fits and tantrums over dinner, but are happy when it's one of "their foods" it's their bodies craving the drug, not the food. Some claim the gf and cf diets have great benefits for ASD kids. I hope this helps, and hang in there.

Ruth - posted on 10/05/2010

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Bless you, dear heart...as a Nana with a high-functioning grandson, I can totally relate to the 5's thing. It is one of the markers of autism...counting, structure, resistance to changes in routine...and only eating certain foods. My daughter has found that putting something her son really wants to eat...chocolate, or whatever, motivates him to eat his dinner. He is 11 now, and still won't eat "combined" foods, and nothing on his plate can touch anything else. Cafeteria trays have helped. These are such sensory little people...and God, the carb thing is so hard to deal with. You are doing all the right things...trust yourself, and although it is hard, the more each day is the same for your little one, the better he will do. Keep him out in the community...my grandson has learned more from peers than any therapy or program can teach. He is a delightful young man, and....after the shock of diagnosis, my daughter has become a better woman and better parent for having him. You are not pathetic...you are not whining. You are a mom who is anxious about a life that is full of challenges right now. So give yourself a break, read a trashy novel, soak in the tub, I'll keep you in my prayers...Nana Ruth

Deb - posted on 10/05/2010

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Hi Trudie,
I wanted to let you know about an online resource/community that you can access to continually ask questions of other Moms who have kids on the autism spectrum. It is http://www.meetup.com/Moms-Connect-about... I wish you the best on this journey. There will be many ups and downs but it can get better.

[deleted account]

You are not pathetic you are a mom of an autistic child. My 7 almost 8 year old son goes to bed really good but gets up between 4:30 and 5:00 every day. I too had to quit work to stay home with him. This was the best thing for Jamie. Things will get better. Things that seem really bad today won't be so bad latter. Jamie didn't talk until he was 5, banged his head out of frustration. Talk to someone in your area about Sensory Intergration Therapy, this was one of the things that helped Jamie the most. Read on the Internet the Neubrander Protical about b-12 and autisitic children. Jamie takes about 6 0r 7 vitamins daily with a B-12 injection. He is in 2nd grade now and doing great. He is still behind but catching up fast. He too has some OCD issues but they are getting better, Each child is different, some things work some things don't. Try to get to a DAN conference this is a great source of information.

Good Luck it will get better.

Mimi

Jeannette - posted on 10/02/2010

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everything he is doing is normal for his situation definately not adhd i have 1 adhd and 1 autistic when it comes to autistic smelling touching even eating cardboard licking metal its all sensory check up on a sensory tool website you can buy packs that will satisfy his need to do all of the above in a more socially acceptable manner, with foods drinks etc you cant force him to eat what he doesnt want to although you should also not allow him to eat whatever he wants whenever he wants, juices which contain fruit and veg like v8 are great for kids who dont eat veges and autistic kids are all about routine and structure set out a timetable for meals sleep and activities/daily trips etc explain it all to him to avoid aggresion speak to him on his level, use picture charts to explain and follow if it helps, when over excited i suggest trampoline and getting a yoga matt rolling him up tightly and squeeze hold for a minute or so and repeat till sensory requirements are met, when he gets upset try distraction techniques such as name 3 things that are blue, 4 things you like to eat it can be anything just needs to get his mind off the matter long enough to calm him down and to give you time to work out a solution or compromise for the issue, with sleep if you use the wrap and squeeze technique before hand and set up a routine where he goes to bed at 8pm at the latest even if you have to lay down next to him to begin with and pretend to be asleep then gradually move yourself away then continue to put him in bed till 7am he will get used to the routine, the biggest thing with autistic kids is that you have to make alot of compromises and sacrifices all of them are acceptable excluding the ones which directly affect their emotional state of mind as this makes them even more socially unacceptable and its not what others think of your child that is the issue but if it isnt sorted at an early age when they do realise they are different they will then notice others picking on them and all the other things that go on and whilst we know they are great no matter what they themselves dont understand and we need to make sure that their social acceptability is at its highest to ensure they dont feel as out of the loop as possible down the track.

sorry i know i go on forever my son with aspergers/asd is 10 i have been dealing with this for a while and he is at the age where he is starting to notice and it breaks your heart because they dont understand and whatever you can do to ease the differences makes a huge difference, after being at school for a total of almost 6 years my son is finally approaching other children and interacting through alot of therapies he has learnt how to hold a conversation, he doesnt get it he thinks its just random dribble about topics but it helps him a great deal to try to fit in.

[deleted account]

Hi Trudie

My son has HFA and ADHD - just recently told he also has high anxiety and depression. He is now 9.

We have had same issues - for a year he ate the same food for b'fast, lunch and dinner - we have gradually worked on this and he eats most things now.
Sleep was an issue - melatonin is good. We have had 1mg and only just gone up to 2mg. he would sleep from 11pm - 3am occasionally 5am. We had to teach him to stay in his room till 7am as we couldn't make him sleep.
Everything took soooo much longer with him - so to teach him eye contact, I got my mum to come in and out the front door - 30-50times in one go, to teach him just how to say hello and goodbye at the door. (it took more than one session tho)
Bedtime - one night I put him back over 160x
He was just 'hard-core' 'temper tantrums would last 4-5hrs.
With regard to sensory stuff - look up stroking therapy.
Decide on what you want to teach your child - ie good manners when people come to the door, and work on it - it will and can take a long time - but it really can be worth while.
Another thing that made a MAJOR difference was getting a dog! Check out 'therapy dogs' so we have maltese x shih tzu - has made such a difference - we got our first one when he was 4 - he really made a difference with his communication.
Diet can change things - gluten and casein free, as can taking out additives and preservatives. We recently purchased a thermomix so we can make things quickly and easily from scratch (so great to have a machine that cooks and stirs for you and will turn off when it's done rather than burn!)

Home-schooling - we tried school - he screamed and cried every day for a year on the way to school - seemed to settle pretty quick when we where there - so had transition problems. We homeschooled and it was excellent for him. meant we could work on behaviours as well as school stuff - well for quite a while it was more social/behaviours than it was school. Routines with pictures - but not allowing him to become too rigid either. this made a massive difference. Things were calmer, easier .....we had less outside stumuli and therefore he calmed down - we were able to introduce him to things at a much slower rate that he was able to deal with. If you are going down this route check out Sue Patricks workbox system - is specifically designed for spectrum kids - certainly was the best thing we tried here.
TV and computer stuff can be highly stimualating - so good to use those as 'rewards' esp if you wanna work on the '5' issue. Today we are gonna do 4 and then you can have......... (fav game on comp)
He would often stand to work - maths was done rolling around on a ball (we did so much more that way) we might manage 10mins of 'work' then he would need to run round the garden 3x, or do 10 pushups/starjumps/ run on the spot!

We didn't get an early diagnosis - he was 7 when we got his. In some ways I was glad as we probably kept pushing forward with a lot of his behaviours. He was behind emotional than everyone else and sill is to some extent - but now at 9, you would be much harder pressed to pick him out as an 'autistic kid'. For the most part he fits in well and is attending mainstream school for 3 days a week (the rest of the time he is at home) However we are looking at bringing him home next year.

Only now with more testostorone running through his body are we looking at meds (other than melatonin for sleep) The combo of ADHD and High functioning Autism can be pretty hard. One needing structure and routine, the other incredibly implusive and reactive. Saw the paed yesterday and we are gonna start today.

Don't compare to other kids - have an idea of behaviours you want to work on and it will take TIME. Write down how things are now - then this time next year you can see what steps you have taken to improve.
Things can improve with lots of hard work and determination - good luck!

Kira - posted on 09/30/2010

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I'm so glad that someone mentioned the GFCF diet. So many dr's shoot it down saying it won't work but when I went in for a check up and my chloesterol was high what was the first thing they told me???? Diet! If you read on the leaky gut and how casein (in dairy) and gluten (in most breads, grains, pasta,etc) get into their blood stream it's no wonder. We also had my son tested for allergies, He is intolerant or sensitive to just about anything under the son but we can do a lot in moderation. We started out giving him 3 mL of Melotonin from over the counter. After a year and a half he is sleeping from 9pm-6am most days. About 3 mos ago though we did switch to the liquid form as the pills didn't work as well and I didn't want to raise the dose if I didn't have to. i didn't want him dependent on it but after trying to ween him off 3-4 times now I think we will always have to depend on it if we want a full nights sleep. I also find that after he has a lot of dairy he goes crazy and then gets really plugged up. The hyperness is it's own thing to deal with but when he's plugged up and can't tell me, he really starts to act out when the stomach aches start so he rarely gets dairy now. i think you should try keeping a journal of the foods he will eat and the behaviours he has afterwards, it really helped me. He will eat when he is hungry enough! My son will sometimes go a whole day where he refuses everything but his sippy cup, I keep him on vitamins and he usually makes up for the lost food the next day.

Tiffany - posted on 09/30/2010

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have you tried Melatonin? It is all natural, you get it in the vitamin isle for the sleep. that helps calm, and if that isnt enough you can always try to start him in 5htp. you should get the chewable that disolve. there cool, and tastey. melatonin, i would say start w 1mg before bed, and if that dont work try 2mg. i wouldnt give him more than 3mg for his age. 5HTP is also in the vitamin isle, and I would give 1/4 of a pill before bed. it helps keep them in REM sleep longer. Hope this helps with sleep!! Weighted blankets rock too. you can get one cheaper at http://weightedblanket.net/

[deleted account]

omg, you are doing so well. it is a struggle i know it is my lil man is 3 yrs 7 mns and just last week (on 23rd) we got the news that he has been diagnosed with autism. it has been a struggle for my partner and i (we have 3 children 2 girls aged 9 and 2 and 1 boy) also struggle at times it can be very demanding and challenging! my son is a very funny eater. he eats no fruit,veg i used to hide veg in mashed potatoe but he even stopped eating that after a while. for the past 6 months he has been having trouble going toilet (having a poo) and his diet don't help him which is stressful for the family. my son has terrible meltdowns at times which can be upseting. he rules the family home! we can not watch anything on telly as he goes mad and changes channles or screams until we turn over (he does not even watch it!) he does not sleep at night properly me and my partner are so used to lack of sleep! he goes to sleep in our livingroom at around 9pm and when we carry him to bed he wakes as soon as we pick him up. So one of us stays downstairs if we are lucky we sometimes can get him to bed but without fail like clockwork he wakes up every morning at 3am, and don't go back off until 5 - 6am by that time our other 2 are ready to get up! the doctor has given us a perscription for melatonin we have not started it yet so hopefully that will help! i know deep down that we will get there in the end. And it does put a huge strain on my relationship with my partner,

Trudie - posted on 09/29/2010

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jovanna, reading your story really touched me. corey was really sick from 6wks to 2yrs old and he had asthma really bad - on the machine every 4hrs and his first xmas night he stopped breathing; straight to hospital we went. he caught everything possible from scarlet fever, urine infections, ear infections, tonsilitis and exma (not sure on spelling) skin disorder and a reaction to grass, mozies..ect by the time he was 2 and half and well, his development was that far behind..we thought it was because of him being so sick for so long. but things just got worse as everyone knows and all the other things start; constantly hurting peers, kindy tachers and family members; no attention span; sleep disorder; eating disorder; sensery issues; and the list goes on and on and on. we start speech therapy and occupational therapy today. it all helps thx thx thx thx

Tricia - posted on 09/28/2010

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My 20 year old would eat only five things for years...bread was one of them. As for sleeping, he got up at 3am. I would say that what you report is normal for your son...I would like to encourage you...It is hard right now, and may be for years (I also had to quit working, but in the end it was worth it). but my son mainstreamed, graduated from highschool and is now attending college. The key is to find, or help him discover something he is successful at to maintain his self esteem.

Rachael - posted on 09/28/2010

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P'S' I'm with Connie below on the "full moon" warewolf thing!!! :-) This is certainly a factor that impacts my boys sleep patterns and many others I know, but their you go another melatonin suggestion - go for it!

Rachael - posted on 09/28/2010

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Hi Trudie, it's hard isn't it.... When it rain it pours! I have a Sev. Autistic boy and at 4 he was still going to bed at 7pm and woke at 10pm and that was it.! No naps, no nothing and we, after 4 years were exhausted! Went to our Pead and against all my "Mum instincts" put him on a low dose of Risperidal and chased up a compound Pharmacy and ordered some Melatonin after investigating this online. We now have him sleeping from 7:30pm till around 6am "every day" the behaviours have dropped and he is doing much better in all area's because he is rested. We still have all the "autism" stuff but we have our heads around it now - he is now nearly 8. Still no speech but we are working on it. Sleep makes us all feel better and able to cope with what the day unfolds. Sometimes Autistic kids "crave" the things they really shouldn't be eating, so well worth some investigation into what he is craving and maybe some food sensitivity or allergy testing. This was a great help to us and "slowly" we have changed his diet to what I would consider to be fairly good. Apples, saltana's and banana's, bacon and scotch fillet, Fries and chicken nuggets (home made and tempura batter) no dairy at all, orange concentrate cordial by extra jucy (contains no nothing added anything....) for a treat a little cadbury chocolate every now and then. Texture is his thing so he has to be able to pick it up... Banana's are a push! He's on 2ml morning and night Risperidal and 3ml of Melatonin with it at night for sleep. I also use Rescue Remedy on him when he has his spats and it has worked for him - worth a go if this is an issue. Brings him back down immediately and nips the meltdown in the bud!!! Wonderful find and all natural.
Keep going, face each day as it comes. I was a career girl, Engineer by trade. Gave it up to give him all I could and it has paid off. I still have my days, we all do! You are going through a really tough period on many levels, but I want to give you a smile and say "it will be ok, I promise!" Try to get the sleeping pattern corrected with Melatonin it's natural and they use it to get sleep patterns back when jet lagged so it's worth a go. Sleep makes all the difference..... You can handle anything when you have rested!

Morgen - posted on 09/28/2010

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Hi, my name is Morgen, Katy, Tx..
Sammy is 14 1/2....was officially diagnosed...(finally in 4th grade ) with Asperger's. Also OCD and Anxiety , ADD. The food issue is not a surprise. Expecially if he is high functioning. But most Autistics have food issues...Sammy still only eats about 12 things. It was worse when he was younger, he eats only corn for a veggie, unless you count fries..which i do not. He is just starting to try steak...mainly because he is hungry for the protien and he sees his friends eating it...but if its a bad day....forget it. He eats pizza 6 days a week...I kids you not...but he has learned to cook it himself. And yes...I am a stay at home mom. Any large transition ( we started high school this year) usually throws a wrench in life. But he has learned...they do learn to cope. The only violence we deal with..is against himself...
I have to say...it does get better..support is everything. I have mom's, like me...we support eachother. That is what gets us through., you are not loosing your mind. I promise you. The sleep thing...it will come. Suggestion...if you can...every month set a clock in his room...and put it on the time...that you need...it will take a month ...maybe two...but understand...stress..and Holidays..will change everything..so patience ( and bubble bathes for you) will be your key.
Hope all gets better

Sarah - posted on 09/28/2010

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Trudie, I found mine online at Amazon, but I have found the same books at most online versions of bookstores. You might also check with your local library. If they don't have it, they might be willing to buy it!

Emily - posted on 09/28/2010

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Hi Trudie, I also have a 3 1/2 year old with eating issues and we are off to see an occupational therapist who has done an sos course on helping autistic children with eating a balanced diet. My son can eat a whole pkt of biscuuits or tub of yoghurt and find it just as frustrating as you seem to. I have the added problem of him being a coeliac sufferer so am looking forward to getting the help with the occupational therapist as my son is also on a multivitamin to supplement his dietary needs it is very hard and we struggle most days with the food issue but he wont budge so im keeping my fingers crossed, dont give up and keep offering different foods as it may help who knows lol i try this in the vain hope that it will.

Evonne - posted on 09/28/2010

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Hi Trudie, First off you are not pathetic. No mother of an autistic child is pathetic unless they do nothing. Lots of us try and fail all the time. As long as we keep on trying we're doing great. My guy (Sam) just turned 10. He had a sleep/eat cycle much like Corey's for a very long time. I put him on the gluten free casein free diet when he was 7 ( I actually tried and failed with this diet twice before getting it right) and since then he has been a much better eater and sleeper (without sleep aids - not that there is anything wrong with sleep aids I just prefer not to use them if I can get away with it) I know there are a lot of mothers and doctors who are against the diet (I used to be one) but since Sam has been GFCF our life has been much better. I could not potty train Sam, I tried for 8 months straight with no success. After he went GFCF he was trained in a week. He slept much better (down by 9:30 up at 6:00 how cool is that) He stopped asking for food every minute of the day and just ate three meals and a couple of snacks. He stopped saying "are you okay" all the time. I really believe this diet improved the life of our entire family because when Sam sleeps mom can sleep and not be such a grouch to her husband and two other children. i also really recommend enzymes. they really helped with Sam's soft stools and i think he is getting more out of the foods he eats. Anyway, that is my 2 cents on the matter. Hope you find what works for you.

Jovanna - posted on 09/28/2010

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Hi Trudy, I to had to end up resigning from my career as a Youth Advocate, and Program Supervisor for the Human Service Dept. of Social Services here in Boston, Massachusetts...My story is similar to yours with my son(hes 14 now) with my son, by the age of 3 he was an advanced child,he knew how to read and write like you and I, he spoke 5 languages which he phonetically thought himself...it was amazing, at home we spoke both English and Spanish and then just by hearing my coworkers speak he thought himself Italian, Portuguese, and the most amazing one is French...I say this because he over heard one of my coworkers speak it with a baffeled look on his face and asked me mami what language is that? and I said to him that is French baby, he then looked at me for about a minute of so and then said...mom I want to learn that one....so I said ok I will get Maggy(coworkers name that spoke french) to teach you, he said no mami I want to hear her...so I new that he just wanted to hear her speak it around him...so when I told her my sons interest she said I have a perfect idea I will get him a tape set to learn the language, (keep in mind hes only 3) so every day for a month we went home and I would put the tapes in for him and he would sit there just listening and whispering then at the end of that month...when I took him to my office, and he saw Maggy he spoke to her in french, he had a full conversation with her....but he would only speak the language that he knew with the people that spoke just that language...IT WAS AMAZING ...after that I tested him, and I could not believe what I saw, so I had some one else test him...sure enough....he was 3 years old with a genious IQ level....he was doing 8th and 12th grade level work etc...then when he became school age I (we) were so excited to start school, and that is when the problems began, within that year my son started to have episodes of ahsma and he had to be placed on high doses of medication in order to control it...one month while on steroids for that he contracted scarlet fever so he had to go on oppeoid steroid for that as well, and while giving him a bath he looked at me and I saw it...i litterally saw it...hes eyes and facial expression changed and he said to me..."mami I think Im going crazy" i said "what do you mean my love" he told me " I cant stop this thing in my head " I knew something had just happened in that split second I took him and wrapped him in a towel and I took him to the emergency room and I cried I could do nothing else at that moment but give him every minute of my day...and fight for him and get him the best specialist on the field and I fought to find out what was happening to him for 3 years nobody could tell me what was wrong all they could tell me was that what ever was happening to him didnt happend, they had no clue...all his scores were off the charts my son regressed so much that he completely forgot how to do everything, tie his shoes, hold a pencil or a spoon, couldnt hold a cup with a tight grip, forgot his birthday the days of the month, how to tell time, started speaking with a lisp, he would dose off into blanck space, but at the same time he would hear some one speak and he would try to explain how he remembers those words...but he could not speak them, my son wasnt a vegetarian he was a true veggan, he would not touch or eat anything that derived from any kind of meat or poultry he could not have anyting touch on his plate, he would count everything that he had even how we poured water, milk or juice into his cup, if he had mixed veggies on his plate, he would separate them by size and color and chape, and then he would cound how many of each he would have...needless to say after much intensive counceling and psychiatric help without medication, that was one of my biggest dilemas, I didnt want him to be put on any medications I knew it could be done without them, once he was put on ritalin for a week and at the end of the 3rd day my son had pulled all of his eye brows and eye lashes due to a side effect...so I refussed medication on him and thanks to the fact that I knew and had worked with these people in one form or another they agreed and I worked....he had to have extensive ocupational therapy and physical therapy as well in order to teach him everything all over again,,,,i have to say he is so much better than what he was 7 to 8 years ago, One advice that I will give any parent that has a child that has Autism in any spectrum and obviously has learning dissabilities, YOU HAVE TO HAVE STRUCTURE STRUCTURE STRUCTURE,,,,you will say to yourself my god I feel like such an ass for being so strict but you have to, YOUR CHILD MIGHT NOT BE ABLE TO TELL YOU, BUT THEY NEED IT. without it they would be lost....I changed my sons diet because he wouldnt touch meats I gave him proteins in other ways, and gave him natural vitamins....STRUCTURE, an exact time for bed you have to go to bed with them,lay down with a book around 7pm with your pjs as well it is a slumber party after all,..lol after words tell eachother stories and give a fictional character with his or her name lots of praise, as you tell the story hold their hand in yours and caress it and let them see the difference in size and shape, rub their heads slowly, as your checks touch and run your finger through their foreheads and face and rub their earlobes, lay there with them and hum and sing softly to them this will ease them into relaxing and showing them that they are not missing anything and that you are not going any were...you will see that little by little, you will be able to put them to bed early(7:30- 8:00) and they will sleep through out the night...always keep an night night in their room or a bathroom light on for them, when you hear them get up at night to go to the bathroom get up with them and then go into bed with them again till they fall back to sleep. to eat dinner make them part of preparing their meal, to shower or bathe sit on the toilet and talk to them, to play take turns, to read and study take turns reading and writting a sentence, to get up in the morning wake them by rubbing their face and kissing them, sing good morning to you, good morning to you, good morning dear(your childs name) good morning to you(in the happy birthday song tone), to brush their teeth do the same along side them as you brush your teeth they will look at you and imitate what you are doing, to eat breakfast sit and eat with them at the same time....and while you are doing this you have to remember to take your time, your not going any were any time soon, your time is their time... and be there with them and talk to them, remember it takes them longer to express what they are trying to say...and thats were the frustration and anger comes from....dont rush them, but make it a game...see how fast "we" can do this...and their time is always the best one....lol or remember to say "did you let me win" I knew you did..I love you...your are so smart your a genious...because...THEY ARE.....

Veronica - posted on 09/28/2010

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On the eating front, until he was about 3 or 4 my son (Asperger's) ate everything, with gusto - and with chili sauce. Sometimes he was extreme, eg would eat 6 clementines, or a whole pound of grapes. Then about 3 or 4 he stopped eating any fruit at all, won't even drink any fruit juice except apple; eats very few veg (though when he was little he loved carrots), and basically subsists on a diet of pasta, rice, cheese and salami! As I am veggie and my husband is diabetic, I only have about five meals which I cook over and over! But I am heartened by a young man in our church I have known since he was seven, and who lived for years on pizza and chocolate, but now he is in his twenties I have seen him eat a whole bowl of vegetable stew. As for sleep, son has never in his life slept before 8.30 pm even when he was a tiny infant, and until recently would be up till 12.30 or 1.00 most nights, even school nights. Now he has just entered 6th Form (junior year), he has decided he needs to get up at 6.30 am in order to be awake enough for school. This means for the first time in his life, he is going to sleep regularly at a sensible time of 10.30 or 11.00. It does get better! (I am so thankful to have a husband who gets up at 6.30 and gets our son up, I normally don't drag myself out of bed till 9.00 (I work at home).

Tina - posted on 09/28/2010

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Wow!! You sound just like me talking about my son!! We all feel pathetic at some time or another. I still feel that way sometimes, but then Michael will do something amazing and I know that I am doing something right. Just remember that Autism doesn't have to be a hinderance. i know, I know, ya right. But if you think about it all kids at this age (Michael is 3) have their issues. I just take each day as it comes and take so much joy in the little things. i personally think that with my son, the autism makes each accomplishment that much more enjoyable and each milestone that much more of a celebration. I know that I never get tired of hearing him say mommy, but with my daughter I always swore i would change my name, lol. They are such a blessing to us and for me, I have realized that i am a much stornger person than I ever believed i could be.

Ok, enough of that-Michael is exactly the same-he eats hot dogs and chicken nuggets and french fries. He will NOT eat anything mushy or soft or cold. He would eat a whole thing of biscuits if I let him, lol. Or a package of crackers-UGH!! I used to believe I should take stock in nabisco, lol.
And he also wouldn't sleep. he literally could not turn himself off. he would bounce in his crib for hours after the lights were out. His little eyes would be closing and he would still just bounce bounce bounce. Melatonin did wonders for him. i use the liquid melatonin and get it from vitamin world. I would put 3 mg in his juice aobut 30 min before bedtime. It actually stopped working and his PED has now put him on trazadone. I was worried about puttitng him on anything at first, but it really does make a difference in their behaviors when they are getting the sleep that they really need.

Elizabeth - posted on 09/28/2010

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hi trudie! you just reminded me of my son who used to eat yogurt everyday and nothing else...it was just a phase for him. The next one was bread, then pasta and so on. He is 7 now and he has a wider range of diet. There are still days when all he wants is ice cream but I am just happy that he eats well now than before.

Take Care! I know its a challenge but it's part of it. We are all here to support each other.

Connie - posted on 09/28/2010

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We have a family FULL of people on the ASD Spectrum and so we are all lucky enough to talk with each other, share stories and get support from each other. My brother, cousin, uncle all have it and when they were little - except my cousin - there wasn't really a whole lot of options. We are now realizing that all the challenges that we all share are soooo common and the trick is to ask a LOT of questions, ask for advice from people on forums such as these, figure out access to as many different programs that you can for yourself, your child and your family. I don't know where you live but I can tell you that I live in a place that has the best support system, facilities and services - what you are experiencing is about as normal as it gets for a family experiencing autism. There is a great DVD - you can get via amazon.ca called "Normal People Scare me" It is made by a young man who has autism - they interview kids with a variety of differences on the spectrum - very helpful and insightful...then follow that with the sandwich kid which is made by his younger brother...just as insightful. I had a few "AH HAH" moments with them. Good luck!!!!

Valeta - posted on 09/27/2010

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my daughter is 6 and has ADHD and Autistic Spectrum Disorder! she can be a handful and finds somethings very difficult. she has quite a few ocds as well like washing her hands and face all the time, using 6 pieces of toilet paper each time and you cant talk to her when she is counting it out. My daughter does to many things to mention but she would not be the same beautiful girl if she didnt do all these things, at times she can be laughting so much she cries and thats wonderful, there is one book that she laughts so much at and it doesnt matter how many times a day you read it she still laughts the same. she is a terrible eater and eats the same things all the time, even the same brand as she doesnt want a different brand. she has the most awful vocal tic, she sounds like a old man ready to spit so she gets alot of looks for that! she also has facial tics, sometimes sits down and will not walk anymore and she will do this anywhere. there are lots of other things and i could be here all day telling about them but i always think that things could be worse, yes these children tire us out and yes we get stared at because of our childrens behaviour but we love them to bits.

Jaenelle - posted on 09/27/2010

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Hooray to all the moms who started out by stating you are not pathetic. Motherhood can be really tough for the best of non-TV-everything goes by the script-supermoms. No matter how many books I read and how many specialists I've consulted, there's just broad-spectrum analysis for autism. It covers so much and presents in so many combinations, they're just taking an educated guess, at best. Be kind to yourself and learn to be an advocate for your child. Don't make yourself sick - this is easily done with ALL the stress and ALL emotions. This is his life and your life - it's everyone elses job. Focus. I remember feeling bad when doing to the drive-thru at 6:30 am to get my children french fries and orange juice because that's all they would eat. I was working 60 hours a week and beyond tired. The staff gave me dirty looks every morning and one time I just started to cry. People have no idea. 5 years later, the menu is full of fruits and veggies and proteins and pastas. It takes time with MOST CHILDREN. Don't be discouraged.

User - posted on 09/26/2010

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Hey i have been there myself! My son wouldn't eat anything but nuggets and french fries. I was so worried i was maken myself sick. As to your question "yes" it's normal. Alot of children with autism get in to a way of doing things and they act like it's the end of the world other wise. I had to ride it out and my son has just started eating more meat and yes veggies... so there is hope! And your not patheic! It is a struggle hang in there it will get better!

Megan - posted on 09/24/2010

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Your not pathetic, believe me. I was severely depressed and denied anything was wrong for months before taking my son to be assessed and even then had trouble making it to weekly therapy meetings. My son used to do the odd eating thing where he would only eat one food and a lot of it. Now we are a bit more balanced, just keep offering over and over again. For my son it was just getting used to the texture/taste.
For us with the tantrums and hitting we talked about it and finally hit the point where it isn't acceptable. If he starts to have a tantrum, he 2 warnings to calm down then he has to go into his room till he can calm down. Its taken a year (we started when he was 3.5) but now he can calm down with the warnings about half the time. The hitting is an immediate time out now, in his room with the door closed. Usually 3-5 min but used to be less.
You are doing great, every kid is different and we all have to adapt things to work for us.

Heather - posted on 09/24/2010

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Hi Trudie, first, you do not sound pathetic at all! We all need help and support! Good for you for reaching out, you are doing a great job! Sorry you are struggling but I promise it will get better.

Diet is tough. My son, who is 5, Austin, used to eat everything (at 18 months), now, he only eats limited things. I always get him to try at least one bite of something new, then he can have his pasta, rice or chicken nuggets. (He does eat hamburger too sometimes and I give him V8 Fusion because of the vegetables in the juice, he likes the peach/mango one best.) Each time I make the new dish, I get him to try more bites ... and so on. I have a friend who told me that she knows someone who freezes everything on popscicle sticks! EVERYTHING! Even broccoli and the child eats it! I wouldn't worry too much about the number thing, each child has their little differences. It might make him comfortable to do that. You can always speak to the therapist about it too.

Sleeping, now I have had that problem for a while. I have found a few things. No TV after a certain time or computer. I separate him and his sister (they just love to play together and wind each other up) at a certain time at night and the biggest success I have had ... SWIMMING! I take my son once a week to swimming and he sleeps like a baby ... not just that day but for days to follow.

I hope some of this has helped.

Good luck! You are doing a fantastic job and it is not easy to go through this ... remember, you are not alone, we are here to help, support and most of all, understand. Take care! All the best to you and your family! :) Heather

Sandy - posted on 09/22/2010

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Trudie... Melatonin is an over-the-counter supplement. No script from the doctor is needed, any drug store, even walmart carries it. It was recommended (by the PED dr and psychologist) for me to use on my twins when they were diagnosed at 3 1/2. They are now 6 years old and I just started giving it to them because they have school all day this year. I give them 3mg before bed.. it has worked miracles. Melatonin has recently been recommended my another ped for my older son (adhd & Anxeity) and from the PED nuerologist the twins have been seeing this summer. I have to say I was hesitant at first but I had to do something to get them sleeping for school.

Trudie - posted on 09/22/2010

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thank u sarah, that book "a parent's guide to aspergers and high functioning autism: how to help your child thrive" where did u get it from and the other both sound very helpful

Trudie - posted on 09/22/2010

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thank you so much for your help, Connie your son sounds just like my boy and did u have problems getting the melatonin because my doc was told by the pediatrician to proved a script for melatonin and he the doc looked it up and said that this is an all natural medication that is not recommended for under 18yr olds, so i have to deal with it..not fun.
so i will have to wait and talk to pediatrician again.

Sarah - posted on 09/22/2010

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OK....first off, I am guessing that your family Doc does not know much about autism. There is a BIG difference between autism and ADHD. If all the specialists have said that he is high functioning autistic, then he probably is...but ADHD is what they call a "co-morbidity" or co-diagnosis. It is very very common for a child with autism to also have ADHD.

It sounds to me like you have several issues going on with him. The smelling and touching everything is a sensory seeking behavior. There is *something* his senses are not registering correctly, and he is trying to make up for it. His bad diet is probably connected to the sensory issues too--the foods he refuses may taste super strong to him, or the texture may be something that actually causes him pain!

The doing things in 5s sounds like a touch of OCD to me--also a disorder that is very common in children with autism.

there are two books that really helped me with understanding my (now) 14 year old when he was first diagnosed at age 11 ( with Aspergers). The first was "a parent's guide to aspergers and high functioning autism: how to help your child thrive" It really explains things in a way a parent can understand, without making you feel dumb. The thing I liked the most was the little scenarios throughout the book...it would give a situation then explain why the child with autism reacted the way they did! The second book is "the out of sync child" by Carol Stock Kranowitz. This one is about sensory problems, and also touches on how sensory problems can be the root of *some* bad behavior. She also explains WHY it is a problem, and some ways of making it not a problem.

Connie - posted on 09/22/2010

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Your little guy sounds a lot like my little guy. Sensory behaviors like touching and smelling food can be a part of his process. I can tell you that he will probably eat whatever he needs in the highest volumes. My little guy does not ever eat veggies or meat, pasta and really grainy things. He does eat a lot when he needs it and if you are concerned about his diet you can certainly access a nutritionist or a feeding clinic (that is what we have out our autism center) and they can help you out. I give my son a bottle of ensure every night before bed. He has 10mg of melatonin a half hour before bed - he is usually asleep by 10 pm and then up again between 6 and 7 am. Full moon he sleeps about 4 hours no matter what we do. Aggressive mood swings are usually associated with lack of sleep or a change in his routine. We had to fight pretty hard to keep the same aide he had last year because school has always been a difficult transition. There are many families who choose to home school their little guys - we did not as we have four children and they are expensive to feed =0) He probably seems like he needs a lot of attention because he senses your needs and he feels the need to be nearby. Classic autism is what they call my sons level of autism and he will get bigger and he will learn - it gets easier as they get older. My little guy will be eight in January. You need to find some kind of support so that you can figure him out. Kids with autism are a strange little bunch as they seem to only eat what they need, sleep very little and they have more energy than the lithium ion energizer bunny. The other consideration is simply that he could have ADHD combined with high functioning autism. The ADHD can be managed with diet, rest and activity for a while - in my opinion - my boys both have it. My neuro typical son was medicated at the age of 13 - to get him through puberty. My younger one we just started him on it because he was causing a lot of grief to the structure of our house and it was getting expensive to fix and replace things all the time. He is on the lowest dose of Biphentin - he is still busy but he isn't a human rocket launcher anymore.
You don't sound pathetic - you are learning about a difference in your child that is very challenging on most days. I wish you luck - make sure that any decision that you make regarding your child is well informed, does not follow a "fad fix" as I call them, they are unique individuals not unlike other children. Be patient, learn everything you can and go from there. I wish you luck and wellness. Cheers.

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