help

Marie - posted on 01/01/2009 ( 13 moms have responded )

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my son is currently seeing specialists to see if has autisum, he is delayed with speech etc, the waiting is killing me, does anyone have any tips on how to deal with him as no one is telling me how to deal with it and how long does it take to get a specific diagnosis

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Kerry - posted on 01/04/2009

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Having lived with autism for all of my kids lives i didnt suffer from them not speaking they knew the words but would not use them, it was like they couldnt see a reason to. even now i get the response from my son about ssimilar things, like the teacher wanted them to write something down, kid wont he says she knows i know the answer why should i write it down? its the same with speaking, mum knows what i want why should i say it? Never make the mistake of thinking this means they dont know because i am sure they do, they just cannot see a reason for it.
So for ones at a young age I am with Ann from early postings, i would suggest trying sign language. Explain to the child that as some of his words dont work properly just yet, how about him and the rest of the family try learning signing, and signing would be fun and let everyone talk to those who have a hearing problem also.
The signs i think give autistics something logical to base talking on. A lot of the time to my kids, anyone talking is just polluting the airwaves with noise (and hurts their sesitive hearing, one of my girls can hear so well she can pick out an out of tune violin within an orchestra! and that one could not have female teachers the voice hurt her ears). So hey they are autistic, so if signing can make life easier for them why not try it? And by school age the combination of signing and occasional speech when they want to, might help bring them mmore friends even. they could be buddys for some of the hearing challenged kids, and thats something autistics love to do, they really like the superior feeling (i think, jsut my view with my own kids) thats why they like to chat with adults and those younger than them, it gives them a chance to be the 'expert'.

Linda - posted on 01/04/2009

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Hi, I've been reading the articles and they have been really interesting. My three year old nephew has been diagnosed with ASD. He doesn't really communicate, although he can say the odd word. We've noticed that his speech is deteriorating so his distraught parents are about to embark on the Sunrise Programme. Has anyone had any dealings with this programme and know anything more about it than we can gather from their own website. Any advice would be really appreciated.

Kerry - posted on 01/04/2009

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hang in there marie, I have met kids who dont 'speak' until they are 9 or 10 and they turn out just fine can speak if they wish and they do understand and they do have the words, sometimes just prefer not to use them, its a bit like if they dont have anything to talk aout they will say nothing. So it might not be too much of a bad thing.

Marie - posted on 01/02/2009

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thankyou all for your replies, my son is 2 and half he sees a speech thearapist and in last month or two has started with words and tries to put them together,some words you can;t tell what is but he doing really well. we tried signs but he can't or won't try them out so i have given up with that. we also have a inclusion support officer coming once a fortnight to try and help him play as he only does things what he learnt from me, eg cooking cleaning etc. i do get so frustrated as i seem to be on my own and he seems to be the only "naughty" child in playgroups etc but reading all the comments its all normal. i have 3 boys unders 3years so its very difficult as my 18month old is copying everything his brother does, we have been told not to worry bout him though as he will copy and he shouldn't have autisum if thats what it turns out to be, once again thankyou

Amy - posted on 01/02/2009

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To add to my last response, you may not get a specific diagnosis, esecially if he is not autistic. Doctor's tend to be cautious when Autism is the focus because there are so many characteristics of Autism that normal behaviors of children. Right now, be sure to be there for your son, focus on what he CAN do and work on his strengths in order for him to improve in the areas of concern. If speech is your only concern at this point, utilizing what you have in your home to help with his speech, such as doing a lot of floor time with him, play, read, talk to him, even if he is babbling, respond to the babble, make conversation. The idea is to engage in him conversation, encourage him to imitate, do a lot of repetition, provide choices (i.e. ask-"do you want milk or juice") if he points at the milk, say-"you want milk" and really exagerate the words and pronunciation of the words. It may sound silly, but it works. Visual cues with toys or pictures, touch cues to the mouth when speaking (i.e. pointing to your mouth when talking or labeling an object that he wants-place toy near mouth and say the word with it near your mouth "you want the r-a-t-t-l-e" exagerate it a bit). If he is getting frustrated because his need is not being met, stop what you are doing, give him direct eye contact, make it simple when talking to him. Ask him to take you to what he wants and if points to what he wants, say what it is it and ask him if that is what he wants. Remember, that our children at the toddler ages are like little cave men, they are learning so much in such a short time that they may have difficulty at times, so we as parents have to be patient and understand that a 3 year old is not able to have the same mindset as a six year old or 10 year old, and so on. Also, whatever your anxiety is about the test results, he doesn't understand what is going on and will read from your anxiety, frustration and fears, they are like little beacons when we are out of sorts. Try to be a calm and patient as you can. Doctor's are not as quick as we would like them to be, so your persistance is important and calling after two weeks from the date of the assessment is good and call each week after that. Sorry so long. Hope that helps.

Amy - posted on 01/02/2009

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Depending on the age of your child, there are state funded programs that work with families who have children 0-3 of age. In Illinois, it is called Child and Family Connections and each county has an office you can contact to have your son evaluated by licensed professionals. If you son is older than 3, it is encouraged that families seek out a Developmetal pediatrician to recommend or refer families to a doctor who can complete a full Medical Diagnostic specific to your concern of Autism. If speech delay is the only concern that you have and there are no other characteristics that would indicate Autism, then I would talk to a speech therapist. Contact Easter Seals in your area, they will likely have a Speech Language Pathologist that would be able to assess your son. Always make sure your insurance is accepted at any local center that focuses on developmental delays. Hope this helps.

Diane - posted on 01/02/2009

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My 10-year-old was diagnosed with Moderate Autism in 2001. He was non-verbal, tantrummed on average of 4-6 hours in combined episodes per day, and was significantly delayed in nearly every area of development. We threw ourselves into reading and researching everything we could get our hands on, found DAN Doctor to begin addressing his biomedical issues (for instance, he did not have a formed stool for over 2 years - that is not normal, and we discovered he had a major yeast overgrowth, which once treated, eliminated his chronic diarrhea). We implemented a home ABA program, 35 hours per week of one-on-one therapy to help him catch up on his learning delays, and put him on a gluten-free, dairy free diet. The diet helped calm him down, he started sleeping through the night, and helped him to be able to sit and attend in his home therapy program. Diet pretty much helped set the stage for everything else to work. There was not one answer that helped him - he needed a combined approach. But his interventions have helped him tremendously, and he is now 10 years old, mainstreamed into a typical 4th grade class in Public School, and a strong student (got straight A's in his last report card!).



Just know that there is much that can be done to address the issues common with autism. We are not treating autism. We are treating my son's gastrointestinal issues, vitamin and mineral deficiencies as identified through testing results, yeast infestation, auditory processing issues, etc. Email me privately if you would like me to forward info for newly diagnosed kids to give you ideas on next steps.



diane in Middle TN, Just a Mom helping her son overcome autism, one day at a time

Ann - posted on 01/01/2009

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My 10 Year old was diagnosised when he was 2 and a half. But even after the diagonsis it was kind of hit and miss with seeing what worked for him. We tried speech teachers, But it didn't help, so I read everything I could get my hands on about autism. He couldn't talk to us which resulted in a lot of crying and screaming on his part. I pick up some videos and books on signing. He is not hearing impaired, But Doing the signs while talking at the same time to him helped so much!! He picked up on it right away. And with in a month he was talking. We leared the signs for the simple every day things like, eat, drink, potty, sleep, and of course a toddlers favorite "More"
Good Luck and hang in There!!

Kerry - posted on 01/01/2009

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hello marie, as the other posters have mentioned, short instructions without any extra padding, such as, get your outside clothes on. if you ask where are your outside clothes you will get a negative reaction as the question is confusing, it is asking where as in the drawers, shelf room . to an autistic that is NOT an instruction it is a question.
short sharp intructions work best. Sentances that have more than one instruction are also confusing as children cannot remember the sequence or the amount of instructions within that big sentance. Charts with pics have worked for a lot of kids, like the bathroom list for cleaning tetth. first pic would be toothbrush, net pic would be toothpaste, next pic is the paste on the brush etc. BABy steps (and i often still have to use baby steps on my 21 yo son)
Try not to change routine in the house as autistic kids dont like to change the way they do things so its also a good thing to show them something the way you want it to be done , always, as they cant get a handle if you change the way to do something around. (when cooking make sure you make any changes when they are NOT looking or not in the room, as eating can also become a challenge and if you make the fav dinner a different order the next time they will see it as being a completely different dish and try to get out of eating it) Some children have trouble with the texture and smells of foods (my son will not eat ground beef still even at 21, it makes him gag) one of the other children cannot eat rice or weart clothing washed in certain powders (she says they smell like rotten eggs).
Read what you can about autism as the implications can be very far reaching until you have figured out your childs differences.
Its a lifelong learning situation and even though i have been doing this for over 21 years now, i still hve to think about how my sons differences apply to each situation and its automatic now for me to avoid situations where one of his troubles shows up.
good luck to you and remember you are doing the best job you can with what is available to you.

Venetia - posted on 01/01/2009

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Hi Marie,

My son was diagnosed little later then most cause of family difficulties but now he is getting all the help that he can from the school and from therapy. One way I worked with my son's speech delay is I taught him a few important signs from sign language, like food for when he is hungry, more and a shoes. It is a work in progress still. Another one is PECs. It is pictures of important things in your sons life. Ian's school and therapists are using this. Actually there is a website that can help you out. www.pecs.com Do think about some sign language, it is now being used more for people with disabilities who have trouble communicating or speech problems. GL to you.

Sandy - posted on 01/01/2009

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A child who is delayed in speach often has behaviour issues. In order to help him communicate so that he is less frustrated, attach visuals so that he can learn that language has meaning. For instance, if you want him to get ready to go outside, often showing him a series of pictures can help him understand exactly what you are asking of him. It can be a 4 step set of pictures, beginning with coat, ski pants, boots and the final picture being the play structure outside so that he understands why he needs to put his outdoor gear on.
Another thing that you can do for him is to speak in short, clear sentences using simple words. "shoes on" for instance as opposed to "ok, let's go get your shoes on now so that we can..........". Although he may understand what you are saying, he may not be attaching meaning to what you are asking of him. Children need to be able to retrieve the visual from their mind to attach to the word in order for them to understand. Once he begins to learn that language has meaning and that when he communicates, he makes a difference, his frustrations should become less and less prominant.
I work as a Child Development Worker, and many, many of the children that I work with have delayed speach. Depending on where you are, the wait to see a specialist may be quite long. If he is seen in a child development clinic, and he is showing signs of being on the Autism Spectrum, the diagnosis is made during that visit.
I hope this helps.

Paulette - posted on 01/01/2009

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Hi Marie,

I have a son with mild speech delay, etc. With the speech I would try putting pictures up on things around the house for him to point to since he is having trouble getting his words out. I printed them out on my computer. Use the Leap Frog dvd's "Letter Factory", "Word Caper", etc. I would also when talk to him enunciate your big words. It will help later on. I would use simple instruction...due to the fact that he understands you and is smart, but his brain is slow to process and send it to the right area for him to use the information. That is why he may just look at you a moment longer when you or anyone talks to him. If he is playing or listening to the tv/movie and does not seem to hear you....this is called hyperfocus. You need to go to him hold his chin and talk calmly. (It is not always easy to do =0). ) For tantrums...when my son has some...my husband has found taking him in his arms and squeezing the giggles out does the trick and he will say now come on I want to hear some giggles/laughs, now come one where are they?...it is just a big bear hug type of thing. Something else we do is let him lay on the floor and have the tantrum. It lets him get it out and we do not feed into his need for negative behavior when it is for negative behavior. The tantrum = fustration. They want to communicate something but do not know how to get it out. There are also noises that can set off a tantrum. These children have sensory issues. My son does not like high pitched noises like the vacuum. There are food texture issues too. For you and how to get through it till you get you diagnosis...make sure you vent to friends, family, etc. Take care of your stress level...listen to music, soak in a tub, etc. whatever helps you relax. If your relaxed it will help him to relax. I hope this has helped you. The wait is not fun but it will go by soon enough. Unfortunately, with getting help for our children it seems to be a wait and see game.

Charlotte - posted on 01/01/2009

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My son is now 2-1/2 and I was told about 6 months ago that he's somewhere on the PDD spectrum and possibly/probably Autistic. Then the waiting game begin to get the specific diagnosis. There is a 6-month wait time for him to see a Neurologist to confirm a diagnostic. As for how to deal with him...here in Connecticut, we have a "birth-to-3" program and he receives just about everything that is offered. He has come so far with his specialized teachings. Have you looked into anything like this where you live? It really helps. When my son started this program, he had almost no interpersonal interaction skills, and now he's great with that. He still has a speech delay and really doesn't have any words yet, but he does have some approximations, so there's still hope. So, all this being said, as for dealing with him, just do the best you can, give him all the love you have, and when he's sleeping, cry or do whatever you need to in order to release your stress. I cry on a daily basis because as his mother I just want to "fix" him, but I can't. I'll leave you with something one of his teachers said to me..."These kids are like a puzzle with multiple pieces and we just need to figure out how to put them together, that's why it takes so long." Hang in there!

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