*Em*
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Joined: 6/29/2005
Msg: 1 | |
| possible autism
Posted: 7/25/2006 10:33:10 PM | so my son is still awaiting diagnosis after having 3 assessments and having been told that more will follow-which is great because at least i know that i was right to push them.
however, whilst waiting for appointments/assessments etc, your kind of left in limbo. they forget that we still have to try and cope with our children..that whilst they are writing things up or slotting kids in, that meanwhile some parents are struggling with making it thru each day with a child that worsens day by day.
so if any parent can offer their experiances of an autistic toddler-please let me know because each day with max is different and is a little harder.
at the moment he has started smacking. hits me and still whacks his 5yr old sister. its almost like he has no control over it. he also feels the need to show me toys constantly and i have to say what he wants me to say or he will get in a terrible state..
ie; he shows me his little postman pat car and says postman pat-i then have to acknowledge that ive seen it and say 'yes. postman pat'. this may seems trivial but its constant and if i dont look, he will scream blue murder.
he demands drinks/food 24/7..even whilst supposedly asleep. this sounds like a typical 2 yr old perhaps but he will never let anything drop and goes on and on untill brought to a complete end by me putting him in the buggy, to which he will sob like a baby for ages.
potty training is a no no as he refuses to sit on the pot and is so scared about letting his wee go.
he still freaks if a child his age or younger comes within 10 yards of him and takes toys with him wherever he goes. god forbid if he loses them!
sleep is erratic and routine in his savior-without it he falls to pieces!
so anyone else with a diagnosed autistic child that has had these things? | |
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tkasya
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Joined: 11/30/2004
Msg: 2 | |
| possible autism
Posted: 7/26/2006 12:37:20 AM | i would suggest trying to locate an autism support group in your area..i do respite care for foster homes and i can't speak highly enough about support groups. even if nothing else you may be able to get some answers and suggestions from people who are going thro what you are now..
Maria | |
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| possible autism
Posted: 7/26/2006 3:35:58 AM | | Hi, my son is 15 and was dignosed very early with autism at 2. I feel for you as I know what you are going through. The autistic association is around the world. Ask for their assessment and help. From experience get as much occupational therapy and speech therapy you can get while he is young and encourage his social interaction in playgroups wherever possible. Get some books from the library, and look after yourself as it will be draining for you emotionally. Autism is very easily diagnosed, and is a broad spectrum,so get as many referrals as you need to be sure of what you are up against if any. Echololaia in speech is a key sympton of autism, repetitive conversations, and talking about themselves as if they were someone else is common. Arranging things in line formation, lack of eye contact, and fear of noises, avoiding foods due to texture and smell, fear of objects, appliances are very common. I hope I have shed some light for you. My son now attends a very normal school, has a very high IQ and I love him dearly and would not change a thing about him. | |
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| possible autism
Posted: 7/26/2006 5:24:32 AM | | Emma - i do not have an autistic child but am a developmental services worker and I have worked with many children and adults with autism. It is very common for austistic people to have a so-called obsession with food. I would suggest you also get your doctor to check your son for pradar willy syndrome. It is very commonly linked with autism. It's basically when a person will eat everything and anything even when they are full and not hungry. Of corse there is much more to the syndrome but that is the jist of it. Good luck | |
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| possible autism
Posted: 7/26/2006 5:38:37 AM | Hi Emma,
I am a mom of 3 and 2 of them have Autism. Firstly, take a deep breath and know that it isn't the end of the world, although, sometimes, it sure feels that way. Thankfully your child is verbal. The obsession of showing you toys can be turned into a great activity to promote language and interaction....when he shows you a toy, show him something after you recognize his item. I do this with my 9 year old (who has just become verbal) when we go walking...he'll babble, I'll point and say...what is that? He'll answer...I'll do it again and again and again. Fantastic interaction and it is easy and free. If the obsession gets too demanding, I'd set up a timer or Visual rule chart stating how long they can do it for....an hour glass works well too (one of the minute ones). As for the hitting....say the same thing every time...No Hitting or Hands down or whatever works for your family....my son actually has a visual card with his worker/teacher at all times with a picture of No Hitting that I designed on Boardmaker.(I don't carry one as he knows better than to hit his momma...never been acceptable, never will be). Ju7st remember, some of it is Autism(possible) and some of it is age. My son loves to eat eat eat and actually has a weight issue, so I started watching what and when he eats, and low and behold, he has dropped 5 lbs this summer....I am so proud of him (not that he knows, but it is noticable). Try smaller meals more frequently and make sure to discuss this with your doctor. I'd also mention vitamins as well....have seen significant improvement in cognitive and behavioral issues when vitamins (heavy in B's) were intorduced. Good luck....sorry my post is so long winded....a topic I feel strongly about and have been dealing with for the past 11 years...Good luck and if you ever need an ear....feel free to drop me a note.
Angela | |
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*Em*
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Joined: 6/29/2005
Msg: 6 | |
| possible autism
Posted: 7/26/2006 6:40:27 AM | juicyfruit83, id never heard of pradar willy syndrome but im glad you mentioned it. Max has always eaten non stop..when he was younger, he ate cat food, cat pooh, amongst other more normal foods lol-the fact is he didnt care what it tasted like-just saw it as another thing to eat! now he will demand 24/7 and never seems full up. the day that boy refuses food i shall eat my own hat (so to speak). i will be sure to mention it, thank you.
BossyLady, thanks for your post. his speech-altho not clear-has suddenly appeared and he now knows he can use this to his advantage and yells non stop :) he has great difficulty in forming 2 words together and tends to shout rather than speak. he has never babbled which was one of the early warning signs. his eye contact is also poor. the doctor did mention visual cards to help him along but all things take forever here in the jolly uk.
what infuriates me is that they finally say 'ok maybe your right and maybe he has got problems', then they bugger off and leave you to it. i feel i need support and yet there is no one about when its needed-apart from wonderful friends and family of course. i need practical advice to see me and my other children thru the day. my 5 year old has just packed her bags and wants to live with nanny, so she is going to stay with her as its her school holidays, for as long as she needs to. at home she has no respite from max and suffers greatly. max is a big lad-not so much in weight but in broadness and height, and my little girl is like a stick and of average height. max is almost her size and is only 2!
max will demand my attention 24/7, so its hard finding time for my others..more so the 5 yr old and the guilt i feel is tremendous.
i adore him of course and on the bright side he is so very clever and im so proud of him. its just a new issue every day and we all suffer-especially him. i sometimes wonder if i have the strength to make it thru the next 18 yrs. i have days where i just want to run away from him and days when i just want to wrap him in cotton wool. | |
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| possible autism
Posted: 7/26/2006 8:33:38 AM | Emma....I know how you feel, truely, I do. My sons were diagnosed within 3 months of each other and my youngest is considered severe. He had no words until he was 5. Screaming was constant...it is hard...BUT...it can get better. First, you really need to get in touch with your government. I know there are some great programs in the UK for children with ASD. If you cannot find them, contact me and I can connect you with a woman I know in the UK who has been there. 2nd best thing you can do is find a support group....easier said than done eh? Well there is an amazing site on MSN Groups, the support is overwhelming and the ideas and helpful hints and FANTASTIC. Some of the members have been working in the field for a long time and the parents know so much....it is truely beneficial...the site is:
http://groups.msn.com/TheAutismHomePage
Good Luck and remember to take a deep breath, hold on, it gets so much better.
Angela | |
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| possible autism
Posted: 7/26/2006 8:52:49 AM | | No problem Emma - with pradar willy's it isn't uncommon for people to even try to eat un-edible things (for example I had a client who ate things like screws, nails, wood, anything that he could put in his mouth.) By all means I am not a doctor and am not suggesting your son has it, I'm just letting you know because it is something that goes undiagnosed a lot of times . Good Luck and Take care | |
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| possible autism
Posted: 7/26/2006 6:57:40 PM | | Hi my son is 15 and has an Autism Spectrum disorder, Asbergers syndrome. I was like you. went without a diagnosis for years dispite the fact that I told his Dr every check up he was very different. I had never dealt with a kid like him. Though I am from a large family and have around kids of all ages constantly. My son did not play or pretend like other kids. He was never social, still isn't. Then there was the constant repeating of the same phrase over and over. The Drs ruled out Autism. When he was diagnosed with Asbergers they told me to raise him like I would any other child. Well he was my only one so I was fortunately able to give it all to him. Still I struggled with behavior issues. There is one symptom I have not heard about here. It is bolting. I don't mean to tell you about this to scare you, just for you to watch for it. My son would be fine playing or walking along then suddenly take off. I could not take my eyes off of him, even in the yard for a second. I even had a stroller for an older child given to me, it was a God send. Ky, thats my son. Did not even mind it. He seemed to like the security of being belted in. A lot of kids like him have obsessions, his was telephones to the point that he still likes them. I am certain you are struggling and all the advise is great. Get all the services you can he will need them. If you live in the states you will need to get with a social service agency to help you. Believe me no one person could understand all you will need to. My son is in peer groups, it is a lot of traveling but well worth it. They usually group high functioning Autism with Asbergers. Because they share similar social issues. Since my boy is 15 I can honestly say though I see more struggle in our future. I think he can lead a fulfilling life. This is all I am praying for. | |
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| possible autism
Posted: 7/31/2006 11:17:03 AM | | hi my son has a mild form of it it is calld asberger and he dose fine now ther was a lot of held out ther now days he dose good in school but has a lot of trubel fiting in and having friends his age | |
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| possible autism
Posted: 8/4/2006 11:32:49 AM | my son was diagnosed with autism when he was 3. as soon as we got the diagnosis, we went online and read about the gluten free diet, and we tried it right away, within a week he was talking and engaging. it wasnt a cure, but is helped soooo much. i also worked at a health food store and there were so many parents w/ autistic children who were on the GF diet, i heard so many success stories. we currently arent on the diet because we were moving and just really unstable, it is a very big change and it is very hard to keep up with in my opinion, and i just cant wait to get him back on it!
good luck! | |
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| possible autism
Posted: 8/4/2006 5:26:57 PM | Emma:
Okay I to am a Single Parent of an Autistic Son. And as much I would love to relate alot of behaviours to his Autism. I, and you will to, come to learn what is an Autistic Behaviour. Or him simply being a Brat, or just being a kid trying to burn off Energy type thing.
One of the problems we also encounter is that once a child is diagnosed with almost any disorder we as parents start to become overly sensitve to it. It's not a bad thing, as we want to ensure our children are properly engaged in activities.. and are safe from harm.
However you still gotta remember he is a Kid. And Kids learn what they can, and cannot get away with. Don't be afraid to put your foot down and draw a new boundary. Autistic children need the structure in their lives. Right now his routine is anytime he wants something.
If you simply say set up a rule. You may have 1 sanck, and give him a choice. And limit the choice to like say 2-3 items. And also put a time limit on it. No snack say after 7pm or something. It will be a little brutal over the first few days. But once he settles into the new routine he will simply follow suit.
The thing about hitting though... Very common. The reason he is smacking is because he is upset about something. But lacks the needed skills to communicate that with you. So instead he lashes out his anger in a very primitive form. And usually on the first person who happens to be around him.
My Son has a habit he gets upset about something. Goes to the first adult, and smacks them and looks at them like they should be fixing the problem. The easiest way to deal with the anger is remove him from the situation at hand. And sit with him. Let him calm down. A good techniquie. Put him in your lap. Hold his arms crossed infront of him, and on his lap. | |
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| possible autism
Posted: 8/4/2006 6:54:00 PM | | My son was dx in February with high-functioning autism. Feel free to email me if you want anymore info. | |
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| possible autism
Posted: 8/4/2006 10:56:25 PM | | My son was diagnosed with Asperger's Syndrome in grade 4 (he will be going into grade 6)....I have been very involved in the Autism Society which has a parent support group....also one night a month some of us mothers get together and have dinner. it is so nice to know you are not alone. i have spent the last couple years doing lots of research: attending conferences, reading, searching.....would be happy to talk to anyone who is interested......the support group truly helped me to realize i could get through the violence and hardships ....and i was not alone. | |
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*Em*
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Joined: 6/29/2005
Msg: 15 | |
| possible autism
Posted: 8/5/2006 12:02:41 AM | spider, thanks.
you have made a very valid point. because he's been so difficult since his birth, ive become accustomed to him being like this and now he's hit the terrible two's as well, its hard to distinguish which is him being a 'brat' and which is his possible autism.
so far, im sleeping downstairs on the sofa and have been for well over a month now. max has a blow up thomas bed on the lounge floor or sleeps on the other sofa. he continually wakes me up through-out the night demanding a drink and then wakes me at 5 demanding breakfast.
i feel so swamped by him and so worn out that i find myself giving in to his every whim and obviously this is a habit of his that has increased and is getting worse by the day...oddly enough its taken me this long to snap and think 'right enough is enough'.
since 5 (its now 07;58) i have spent 98% of the time telling him no or putting him in his buggy..how a child of 2 can reduce a grown adult to tears is simply beyond me.
i have let him rule this house, partly because i 'know' he isnt right and i feel guilty and partly for an easy life. if im honest, his screams and crys frighten me silly-i think he knows this.
i took myself and my daughter to the doctors on wednesday and told them straight that i need help, that my 5 year old cant cope and that i havnt a clue how to deal with him-there are days when id happily leave him on his fathers doorstep.
today im going to put my foot down..regardless of his supposed/possible problems, this cannot continue as i feel i lack any energy for my older 3 kids.
oh and i do the holding him technique lol does work!
so wish me luck lol he may be two but he's the size of a 4 year old with the lungs of a monster lol | |
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| possible autism
Posted: 8/5/2006 7:15:58 PM | | My son was just diagnosed with AS asperger syndrom? In 95 a doctor wrote in his medical charts that he thought he was autistic but we were in the military and no one ever followed up. Some the things I have read really explains my sons's behaviors. But still learning all I can about it. Thank God for the internet | |
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| possible autism
Posted: 8/5/2006 7:44:06 PM | I had recently watched a program on television about toddlers with autism. They tried to convey that individuals with autism scream because they are lacking the communication skills. Inside, they maybe trying to talk, but they can't get the words out. What they suggested was to make a game out of every day objects, toys and routines, sing songs and reward him with something after he achieves the word. As well, they recommended having the child interact with the older siblings, so the child with autism would learn and get accustom to socializing with other children and prepare them for school.
Ah... the program that I watched was Super Nanny. I know things on that show are compacted into an hour show, but maybe you can go back and view their previous show to get an idea of what was happening with this family and see if there are any techniques you can start with, while waiting that long haul with the doctors. I would give the doctors plenty of time to properly diagnois your child as you don't want them to make a mistake and valueable time wasted.
Good luck..he's a precious little child, with a very smart brain, just needs fine tunning on how to express himself. | |
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| possible autism
Posted: 8/5/2006 8:09:30 PM | Emma, I hope you have some of your questions answered.
Bossylady after 15 years dealing with both Autism and Aspergers Syndrome I certainly know what you mean by taking a deep breath and knowing its not the end of the world. When i look back at the times I have had with my son, and the times I will continue to have, its been a wonderful life changing journey, one I would never want to change, and have certainly grown from. Good Luck to all the parents here with children, your doing a great job, , dont ever give up...and thanks for your insirpational comments | |
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| possible autism
Posted: 8/5/2006 11:42:11 PM | Re: posting 17, the Super Nanny show featured the techniques of the Koegels, who created Pivotal Response Therapy (PRT). You can get books on this at your local bookstore. It's a good way to help teach communication.
I have been working with individuals with autism for thirty years. I run a model program, plus consult with schools and families. If anyone needs any info or help or support or book recommendations, please, please contact me! This is what I do 24/7! (except for reading forums on this website:) ruth | |
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| possible autism
Posted: 8/30/2006 9:54:26 AM | Hi
I know that this is an older thread but I too remember what it was like when my son was young and before he had a "diagnosis".
My son also eats inedible things he as a disorder that they call pica here is an address that tells you a little about it
http://www.kidshealth.org/parent/emotions/behavior/pica.html
One thing that I have always maintained is that we are a family and that Talon is PART of a family not the focus, I have gotten a lot of critisim for this stance, but I don't feel that any child benifits from being the sole focus of his/her parents especially at the expense of other children. That being said Talon has always required alot of work. One thing that I have noticed is that my son will go to extreems to get his own way and that i must remain calm and consitant (spelling sorry) in order to ride out the storm.
My son also has many sensory issues (both overly sitmulated and under stimulated) and that often those cause behaviour problems, so we offer a "sensory diet" things to tap, chew, strech and bang (many are baby teething toys), we have a wieghted blanket and a bean bag chair for him to sit in and get grounded, and if he is running really high a dark room can be calming. some of these suggetions my sound mean, but this is not a "normal" child and he needs me to be creative to help him. When my son was the age of your son he had some really strange fears (and still does to a point) and I just avioded those untill he was older and could deal better. As well I have been trying picture symbols for years and only very recently is my son mentally capable of understanding them, but they do work and are very effective when done right, just don't be to abstract at first many Autistics lack the ability to generlize information.
Any ways if I can be of any more help PLEASE contact me
Your not alone, and it WILL be Okay, just remain brave
All my best
Dawn | |
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*Em*
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Joined: 6/29/2005
Msg: 21 | |
| possible autism
Posted: 8/30/2006 12:47:15 PM | thanks dawn
latest up date...with the help of wonderful health visitors, since sunday max has been going upstairs to bed at 7pm and sleeping till 6am. we havnt acheived this since he was a baby so im chuffed to bits!
today i sat him on the potty as he was busting for a wee and has been terrified of letting go on the pot. i did the thing you are not supposed to do and held him on there in a big hug so he could not move yet was being comforted at the same time..he did it! well-his sisters, mself and his older brother sang and danced and made a hug fuss.
half an hour later he sat himself on the pot and did it by himself-i cannot explain what a huge step this is for us and im over the moon. he has realised that there is nothing to be scared of and in less than a week, we have achieved more than we have in 2 yrs.
he starts nursery next week where he'll be assessed for autism. | |
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| possible autism
Posted: 8/30/2006 2:04:22 PM | oh em thats wonderful!!!!!!!!!!!!!
great news....take the little guy a go get a small present for being such a big boy and making mommy proud.way to go!!
It make you wanna cry sometimes when something with your special child breaks through the challenges and they acheive a huge goal.You wanna grab a megaphone and scream to the world LOOK WHAT MY KID JUST DID!!!!!!!!!!!   | |
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| possible autism
Posted: 8/30/2006 4:27:04 PM | What great news! Good for you! I am a teacher in a classroom of preschoolers with autism. Yesterday all seven of them held hands together and played ring around the rosy--and none of them let go of each other. Only those who live with this disability realize how amazing that is! My staff and I cried, and I have continued to cry every time I retell the story.
One of the greatest things for me in this difficult world of autism is the appreciation one develops for the smallest of accomplishments, and for the simplest gifts in life. | |
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| possible autism
Posted: 8/30/2006 5:18:35 PM | ^^^^ Yeah I totally agree that only those of us who live with disablilites on a day to day basis can trully appretiate those accomplishments for what they mean to us as parents and cargivers.
I think that you guys are all wonderful for the support that you show each other and as single parents its really great to be able to "turn" to someone who feels the same ways as you do and share those little moments.
And since we are sharing:
My son is 9 and is on the sever end of the spectrum, we have a picture symbol that means "No screaming, or you sit in the time-out chair", which is a horrible punishment as far is my son is concerned, well the other day I walked by the sign and 'someone' had scribbled all over the sign (and only the sign not the wall), now I have no evidence as to who did this act of vandalism, but my daughter is away at her fathers, and I don't scribble on things, and the dog doesn't usally either so...... | |
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| possible autism
Posted: 8/31/2006 5:29:15 AM | | LOL.....My son used to put his toileting visuals under the fridge or try to flush them down the toilet!! Kids do the funniest things. | |
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