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Peadiatritions appointment - UPDATE  email this discussion to a friend?

myLot reputation of 98/100. rainbow (3926)   ranked 2 out of 231 in autism 5 years ago

Hi everyone, if this is the second discussion like this I apologise - it suddenly vanished! This is also a long one so if you are not interested then please do not moan at me!

As my friends know Bong had to see a new Pead today - she's on maternity cover.
She was VERY HELPFUL and spent well over an hour with us sorting through his notes etc.
AUTISM - definately but most probably Aspergers as he is quite clever - he has done really well with reading & spelling in the last 6 months and likes art, computer games, etc. His maths and handwriting are awful but she's pleased with his progress.
ADHD - does not think he has this - more self stimulation than attention deficit from what she saw today.
DYSPRAXIA - all kids with autism have some level of dyspraxia
TYRETTS SYNDROME - she feels his ticks are self stimulation and does not think we need panic yet.

What she is going to do:-

Melatonin tablets to help him sleep - posting out to me
Physiotherapist - referal to see where he needs help re Dyspraxia, motor controls etc
Eurosis clinic attendances - to help with bed wetting/wetting in new circumstances
Autism Nurse to start sessions in school

Likes the way I am dealing with his problems and loves Matilda Moo timer idea and my new idea to get a cockeral kitchen timer which he can have control of for some activities. She has written down a lot of things that I have told her so she can share to other mums.

Really excited - maybe finally we are going to get somewhere!

 

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taramoon (418) response was accepted on 3/9/2007.
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tags:  autism, adha, asd, aspergers, children
 
1. myLot reputation of 96/100. shoelover (858)   5 years ago

Rainbow it is great to see things are looking up for you. You have come up with some great ideas. It is lovely to see the Pead working with you instead of against you so that would help tremendeously also. Keep up the great work.


myLot reputation of 98/100. rainbow (3926)   ranked 2 out of 231 in autism  5 years ago

Thank you so much for your encouragement, I have spent so long fighting to be heard and suddenly when I despair I am. I truly hope that this is the beginning of a wonderful time for Bong with the help and attention he needs. It's very exciting for us both.

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2. myLot reputation of 97/100. taramoon (418)   ranked 46 out of 231 in autism   5 years ago

Awww thats fantastic news rainbow, my little boy who will be 5 next week suffers also ADHD but his school and specialist teachers started 2 years ago helping him and he's doing very well, he has his up's and dowm, i have been offered treatment but i dont want to use it, however i have a antihistmine medicine which the hosptial prescribe for sleeping if he doesn't have it he will bounce round all night long Keep us posted cause i know exactly what your going through xx


myLot reputation of 98/100. rainbow (3926)   ranked 2 out of 231 in autism  5 years ago

Thank-you so much Tara!
I'm so excited about this, by the time we left I could have hugged her - for the first time I felt someone was actually interested in Bong and how I felt about his problems and what I want for him.
I'm also really glad that your little boy is getting the help and support he needs and is doing so well. Keep me posted on how he gets on please!


myLot reputation of 97/100. taramoon (418)   ranked 46 out of 231 in autism  5 years ago

Lets keep each other posted on how our little treasures get on, they are so prescious to us, other people who do not have children might think that we are somewhat nutty complaining are kids cant concentrate and do what other kids do at their age, they think it's us mums fault, you will soon see now hun as every tiny step is another step towards another goal for both us and our children, and the more we learn about their condtioning the more we understand them, poor little mights it must be hard for then to. xxx


myLot reputation of 98/100. rainbow (3926)   ranked 2 out of 231 in autism  5 years ago

Thanks sweetie, I kow just how you feel. Bong has his MRI (general aneasthetic) on Monday about his headaches. I promise to let you know how he goes, we think it's a stress reaction but it's best to be sure, he'll be ok but it's going to be a big day for him.


myLot reputation of 97/100. taramoon (418)   ranked 46 out of 231 in autism  5 years ago

thank you hun for best responce xx


myLot reputation of 98/100. rainbow (3926)   ranked 2 out of 231 in autism  5 years ago

you're welcome sweetie- you earned it!

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3. npkeith (21)   ranked 34 out of 231 in autism   5 years ago

Speaking as the father of an autistic son and a nurse practitioner, don't get sucked into the hope that "He's too smart for it to be autism." My son could read at 2 and would introduce us to waiters. He was still diagnosed as autistic by UCLA's center of excellence. A high score on an intelligence test does not preclude a diagnosis. Google search for "DSM IV" and "Autism" to get the official diagnostic criteria. Dyspraxia is common in autistic kids, but not universal. Tourette's syndrome is a separate diagnosis, that can occur by itself or with autism, but many tics or verbal behaviors are just "stimming" or self stimulatory behaviors.

I also recommend everyone with a kid on the autistic spectrum (aspergers, autism, PPD or Nonverbal learning disability) look into RDI or Relationship Development Intervention at Http://www.connectionscenter.com. RDI is the first remediation program to try to help kids have normal relationships and gain the social skills they need to hold a job, live a productive life, get married etc. Not to scare you, but there was a huge study out of England recently that showed it doesn't matter whether you have Asperger's (High Functioning Autism) or classic Kanner's (Rain-man) autism, you have a less than 12% chance of holding a meaningful job, and a less than 3% chance of living independently. RDI is the only program to try to change that, and have any possibility to succeed. No, I have no financial ties to them (other than paying for may son to be in the program), but I have seen the most amazing improvements in my son's social skills that I am a convert.


myLot reputation of 98/100. rainbow (3926)   ranked 2 out of 231 in autism  5 years ago

Hi keith, what can I say it's so exciting afer all this time to feel I got even a bit closer to getting a clear diagnosois and some help for Bong. Of course I know this is not all the help he needs but if it materialises it is so much more than he gets now.
It's nice that you care enough to remind me not to get too excited as this is not the most fantastic offer of help ever, but it's a start and so still exciting to me.
I need to help him any way I can and will be looking at other things I can start trying to put into place as this has given me a little more confidence to try, until yesterday I felt defeated and lost as if I was trying all alone.
Thank you so much for the information and links!
Please may I add you to my friends list so I can pick your brains again, who knows maybe one day I may even be able to help you (like the lion and the mouse, lol.)


npkeith (21)   ranked 34 out of 231 in autism  5 years ago

Go ahead. Glad to help.


myLot reputation of 98/100. rainbow (3926)   ranked 2 out of 231 in autism  5 years ago

ThanThank you for being my friend!

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4. myLot reputation of 65/100. clownfish (1908)   ranked 7 out of 231 in autism   5 years ago

Hi! Oh, that's such great news! I'm so happy for you! That must be a huge relief! I agree, what has been labeled as ADHD could be sensory processing disorder. My daughter used to run around and literally run into things, kitchen cabinets, us, whatever or whoever was around. She's very, very active and was even as a baby. I think that has more to do with sensory stimulation, trying to get the same sensory input that you or I would get normally, than ADHD. I'll have to look up Dyspraxia because that has never been mentioned.

I'm so happy for you! Tell her that if she doesn't keep up with you regularly, you have a friend who will deal with her - and she won't like that a bit! LOL :-) Way to go, Sweetie! :-)


myLot reputation of 98/100. rainbow (3926)   ranked 2 out of 231 in autism  5 years ago

Thank-you so much, your support has been and is invaluable to me. It's exciting to finally get anything other than a label, so it's a good start. A lot of his behavious she feels is self stimulation, which makes sense, we just have to wait and see.

Your daughter sounds like Bong on a Buzy day, other days he can be quite lazy, apparently anyone with autism has some dyspraxia which is all to do with motor control.

Dr asked about my support system and I explained that a lot of us on the net have kids with different needs so if someone needs a hand we pool our ideas etc. She agreed that this could be a better way than getting support from just one group.

I have my fingers crossed about the physiotherapist helping, we've tried swimming lessons - even on a 1-2-1 basis which is expensive and pony riding but he cannot process with the sounds of the water, and once he got used to the pony couldn't sit still, lol so maybe they'll find a way to help with these things too.


myLot reputation of 65/100. clownfish (1908)   ranked 7 out of 231 in autism  5 years ago

Hi! I sure hope they do find a way to help your son! It sounds like you've finally found someone who knows what she's doing! :-)

I was thinking of taking my daughter to a pony riding program last summer, but she was only 3 then and I think she would have been too scared. I think this summer would be better for that. She has said she wants to ride a pony, so maybe we'll give it a try.

You always have our support here! Feel free to send me a private message if you need to as well. :-)


myLot reputation of 98/100. rainbow (3926)   ranked 2 out of 231 in autism  5 years ago

I hope so too, fingers crossed her promises materialise.

Taking your daughter pony riding would be fantastic, 4 is a ver y good age to start, Billy started just being led round the fields and gardens when he was 2 and I when he was 4/5 we started learning together until he wouldn't sit. I want Teddy to go as well but the insurance has changed and I think he has to wiat til he's 4 so it wouldn't be fair to leave him behind, I will be ringing up at Easter to see.

I really appreciate the support you all give me here and if I really hit a downer I promise to get in touch, same goews for you, let me know how you daughter gets on with the ponys too!

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5. myLot reputation of 96/100. webeishere (12986)   ranked 57 out of 231 in autism   5 years ago

My dear friend I'm also so happy that you seem to have a start on things working in the best for all. I'm happy for you. Take care & I wish you the very best of lcuk. I'll also say a prayer for you & your loved ones tonight.
Happy postings from Grandpa Bob


myLot reputation of 98/100. rainbow (3926)   ranked 2 out of 231 in autism  5 years ago

Thanks Grandpa Bob, I'm quite excited, finally I have a hope of help for him.
I'll keep you all updated of how things go! Thank you for your kind wishes and support! hugs

Autism Teaching Materials Resources for parents and teachers of children in the autism spectrum.  www.autisminspiration.com
 
6. myLot reputation of 96/100. sherinek (1989)   5 years ago

I had you in my prayers yesterday night. I was hoping that the new doc would be nice. I am so happy for you. Bong is so lucky to have you as his mom. You know God always give kids with problems to the best of moms. That's what I convinced myself when my son had to undergo open heart surgery at the age of 3 1/2 yrs. Now he excells in everything he does. We just have to go through the difficult period and at the end there will be sun shine. I wish you and bong the very best and hope to have regular updates about his achievements. Bye for now.


myLot reputation of 98/100. rainbow (3926)   ranked 2 out of 231 in autism  5 years ago

Thankss Honey, I really appreciate all your help and support, as you already know!
I'm so glad your little man is doing so well, I'm lucky the worst I've had to deal with is pneumonia, never an operation. I hope he continues to go from strength to strength, it must have been a terrifying time for your family and I'm glad you found the sunshine again!


myLot reputation of 96/100. sherinek (1989)  5 years ago

You are most welcome. The best way to keep you motivated (this is what I practice everyday in my life) when you face a problem, think about the positive things you have. Like, when my son had to undergo operation, I had to take him to another country, cos at that time, in my country, that operation is not that successful. We did not have money. Some how, we were able to collect money, go to India, do the operation and it was 100% successful. I was thinking about the people who cannot go to another country, who has money problems, imagine the kids who have parents who dont care about their kids? So though we have problems, we are lucky cos we have solutions. Good luck and take care.


myLot reputation of 98/100. rainbow (3926)   ranked 2 out of 231 in autism  5 years ago

You are right, there are so many poor childrens with so many more needs than Bong. I did some days at a special school when I was childminding as part of a qualification I was doing and the range of children was breathtaking. It made me realise how luck I am that Bong is how he is. It's true when they say there is always someone worse of.

Talk soon, big hugs!!!!

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7. myLot reputation of 99/100. GardenGerty (35303)   ranked 50 out of 231 in autism   5 years ago

Being listened to is a relief, and being complimented and taken seriously is a huge compliment. I hope this made your day really great, as well. It sounds like the doc is also ready to talk with you. I am glad this was a positive day.


myLot reputation of 98/100. rainbow (3926)   ranked 2 out of 231 in autism  5 years ago

Yes, the first ever positive day, I'm very excited and feel that finally we are on a road to getting him the right help. I know time will tell but this is a good start. It's not help in school or anything really but it's a step in the right direction, so fingers crossed. Thanks for your support!

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8. myLot reputation of 86/100. mobyfriend (827)   ranked 15 out of 231 in autism   5 years ago

Oh I'm very glad to hear that you had such a good meeting and that she has taken action to find new ways of helping Bong. My autistic son also had Tourette like behaviour from some time when he began a new school.
It's great when you finally meet someone who tries to do move your child forward.

Good news. Hang in there and maybe in the future you can post how Bong is doing.




myLot reputation of 98/100. rainbow (3926)   ranked 2 out of 231 in autism  5 years ago

Thank you so much for your support, sometimes it's hard to know what to do for best but yesterday was a good step forwards, quite excited to get it all in place and see where we go next. I promise to keep you informed. Can I add you to my friends list please the maybe one day I'll there for you too?


myLot reputation of 86/100. mobyfriend (827)   ranked 15 out of 231 in autism  5 years ago

Sure you can add me no problem.


myLot reputation of 98/100. rainbow (3926)   ranked 2 out of 231 in autism  5 years ago

Thank-you!

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9. myLot reputation of 72/100. Willowlady (8976)   5 years ago

Am glad for you and yours. All it takes in one good person and why are they soooo hard to find. Am hoping you still looked at the site I shared with you. Never know if the support will be needed. For now you are on the upswing and I am glad for all of you. Please keep us posted and we will cheer you on.


myLot reputation of 98/100. rainbow (3926)   ranked 2 out of 231 in autism  5 years ago

Thank-you so much for your love and support - I really appreciate it! Your magic 8 ball told Bong things would get better, lol. He had to check with it beforewe set of bless him.
I have a whole bunch of websites to help me now and yours is at the top of my list. I am pleased to find some natural remedies, at least if they are natural if they don't help they cannot harm him.
I promise to let you know when something fantastic happens next!
bug hugs!!!

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10. myLot reputation of 58/100. Joey322 (212)   5 years ago

i am not fmailiar with your other posts or your predicament, however, i'm a mom and i can read between the lines. so, i'm very happy for you that you are having support and success for your child.

i wish you nothing less than the best.

i would also like to mention to you the power of healthy eating. there have been well documented cases of kids with ADD and ADHD competely changing from alterations to their diet. amazingly enough, we intake soooo much "normal" foods and beverages that really are bad for us. even "harmless" things like soda and some snack foods. so, i agree that perhaps your child needs more than just a change in diet, but it's worth looking into!!!

take care:)


myLot reputation of 98/100. rainbow (3926)   ranked 2 out of 231 in autism  5 years ago

Thanks Joey, it has taken 5 years to get this much help, they just like to stick labels on and that's it. He was 2 when this started, bless him, he's ok.

I do try my best to watch my kids diet, and you are right it is scary what they put in a lot of foods. I try to make things from scratch as much as I can and have tried removing tomatoes and orange etc from his diet which made no difference to him. I just try to make him eat proper food as much as possible, if I can easily make it at home or it's a brand I know doesn't effect him then it's ok.
I'm glad you are careful about your kids foods too, it's important for their future.

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