I've got a 12yr old son with Sever Spastic Quadriplegia, Cerebral Palsy, Intellectual Disabilities, Epilepsy, Hearing & Vision Impairments, ADHD and now Autistic Spectrum Disorder!
My son had a bleed in his brain some time just before birth, so we new from day one our 1st baby was going to have brain damage!
It's a long hard road but I've learnt so much that I would other wise of not known!
We've been to hell and back a few times and I'm just going to be, from now on, this is it for us, our live's won't change a great deal and I'm ok with that, now!
You know I just always thought/hoped that someone or something would come along one day and things would be a bit better, but I guess I'm dreaming or hoping too much!
I've always thought my sons behaviors were a bit over the top but like everyone else I just put it down to all of his other disabilities!
It was a new Dr and our 1st visit, after spending an hour in his rooms the Dr asked us what we thought about Autism and did we think he may have it!! Well bingo I thought, finally a Dr who knows something!!!!
I felt relief like I've never felt before after we walked out of the Dr's office! My hubby said to me ''well you were right'' and I thought Yep I am, aren't I! I know my son better than anyone does and I just proved it, it made me feel great to have already thought of that ,because to me it meant ,that I do know what I'm talking about!
My son started Therapy of all kinds when he was 11weeks old and still has it now and he started school at 5yrs old in a support unit for disabled children and is heading off to high school next year!
He has had every possible Therapy that I can think of and 10 to 20 people involved in his yearly programs now! No one can do everything but everyone can do something, is my moto in caring for my son along with all his disabilities!
I could go on for days but I wont bore you all!
Anyone who wants to chat about life in the disabled lane or just life, can't wait to hear from you!!
Cheers Kim! ↓
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| Name: rain | Date: Jun 29th, 2006 3:15 AM |
| Hi, how are you? Why don’t you tell us what some of your sons accomplishments have been? ↑ |
| Name: Kim Mori | Date: Jun 29th, 2006 4:33 AM |
He's the most beautiful looking kid I've ever seen ( besides his younger brother, that is) and everyone says it, not just me! Biggest brownest eyes you've ever seen, beautiful teeth with a huge smile, beautiful olive skin and a great laugh!
He's proven most wrong in the medical field, we were told at 21weeks to not waste our love, time and money because he would never do anything!
Well he did do most things; he walked unaided for the 1st time at the age of 4yrs from one lounge to the other, christmas eve when the whole family was together, so that was fantastic! He talks a little; he says mum-ma, daddy, att(matt), bub-ba(harry his dog), nana & par, coke, cold(for ice-cream),water,car, ball, bus
He signs as well; signs for drink, food, dog, clean his teeth, ice-cream, hot food(chips), computer, cat, bus,
He can use a basic computer, he can kick a ball, throw a ball to his dog & his dog brings it back(thinks that great) all of these things are done with assistance, he can't be left alone, never has been only in his bedroom at night when his door is locked from the outside(so he doesn't get out during the night & hurt himself or worst).
I don't wont to sound like "poor me'', I hope that's not how it has come across! Because I don't think like that at all, I fight very hard to help Todd reach all of his goals, sometimes he does but mostly he doesn't , not anymore anyway! And I'm ok with that, sometimes not much changes from year to year, I think it's like a 5yr cycle and then things change again! He's happy, he's loved and he loves us so very much and that's what it'a all about, I guess!
Cheers! ↑ |
| Name: rain | Date: Jun 29th, 2006 4:46 AM |
No one can do everything but everyone can do something,
AWSOME! No! I think you have one of the best attitudes I have ever seen. I love your motto. I may have to steal it, but I promise to give you credit. LOL
What are his goals that you are working on right now? How much therapy does he get now? ↑ |
| Name: Kim Mori | Date: Jun 29th, 2006 5:23 AM |
Well the nappy thing is an issue, so everyday that he doesn't get into that, is a goal! I think between myself & Todd people are starting to get it, I mean by that, that he isn't your text book disabled child- he's very low in some area's but very high in others for his disabilities! He's a mystery really! Getting to High School is a huge goal, not there yet! We've changed the way our local hospital treats special needs patients through Emergancy and now the hospital has a procedure to follow,Thanks to Todd!
Todd was abused in respite care some 18months ago, so we got alot of things changed in their guidelines, procedure etc as well, Thanks to Todd! Look we don't really have any great goals for Todd anymore, just to get through schooleach day and each night is goal enough, for the moment anyway! But I must say I was very excited with the new diagnoses of ASD because that gives me a spark again and a little hope too!
Cheers! ↑ |
| Name: Kim Mori | Date: Jun 29th, 2006 5:41 AM |
Therapy- sorry forgot about that! Well some is put into school hours like hearing, he has a hearing teacher 2hrs a week- vision, he has a vision teacher 2hrs a week, heaps of programs at school,
physio when needed, ot when needed, guide dogs-vision ability in the community, royal blind society- yearly visits, Todd also has a case worker through DADHC which is our governments service, so we get things happening when needed! It's not so hectic with services as Todds got older, but we put in in the 1st 10yrs non stop, so I'm glad it's all slowing down a bit , for now anyway! No worriers about the moto, I like to throw one in every now and than!
Cheers! ↑ |
| Name: rain | Date: Jun 29th, 2006 5:59 AM |
| I was wondering, because you said he seems to have slowed down when it comes to the learning process. If you are trying to teach him many things, you could try focusing on just one thing for awhile. Have you spoken to anyone about getting help for the autism. ↑ |
| Name: Kim Mori | Date: Jun 29th, 2006 6:36 AM |
Yeah I'm thinking his Autism may have taken over what he has already learnt! I was talking to my sister the other night and we both said how clear it is and why no one in the professional field has picked it up earlier! That could be another reason, him doing to much, too many people wanting too much from him, it makes sense to me, but I'm just the mum!
Well the Dr said all his meds are ones he'd have him on anyway, so that's good no change there! It was our 1st visit with this Dr but he wants to see him 1st august, he said he needed a few weeks to think about what to do next!
Cheers! ↑ |
| Name: rain | Date: Jun 29th, 2006 7:27 AM |
| You really are a great mom. It would be good I think to have an experienced autism person come in for therapy. I am in the states. But even here it is different from town to town, and state to state. But here we have people who come in and do therapy in the home. Depending on the program. That is what I did at one time. Now I work out of my home. It depends on the needs of the little guy, or girl. But if you get someone who is good, they can teach you, as well as your sweetie. You might ask the doctor if he can refer you to anyone. I always say try everything, and if it works do it. ↑ |
| Name: Kim Mori | Date: Jun 29th, 2006 8:52 AM |
Thanks Rain that means alot! Yeah I'll suss it all out in the next few weeks! Todds going to respite tomorrow for the weekend, so I'll be catching up on some sleep and me time!
Talk soon!
Cheers! ↑ |
| Name: rain | Date: Jun 29th, 2006 8:17 PM |
| WOW! Respite! Sounds like things are great there. You deserve it. ↑ |
| Name: Kim Mori | Date: Jun 29th, 2006 11:13 PM |
Things are fantastic, I got a phone call last night from Todds respite family and he's going to respite for the whole week, 7 days off WOW!!!!!!
Party like it's 1999. I say!!!!!!
Cheers! ↑ |
| Name: rain | Date: Jun 30th, 2006 12:04 AM |
| My Gosh! What are you going to do? Sleep, play, relax. Please explain how respite care works. That is so great. I am so excited to hear that you will get that type of help. ↑ |
| Name: rain | Date: Jun 30th, 2006 12:45 AM |
| There is a new mom here needing advice with child gates. I am sure you know the most about locking thigs up. :) ↑ |
| Name: Kim Mori | Date: Jun 30th, 2006 12:46 AM |
Respite is a government funded service that allows full time carers of disabled children/adults, a period of respite depending on the severity of the disability and how persistant you are! Because Todd has so many severe disabilities and I fight so dame hard to keep our family together and not putting Todd into full-time care, is the reasons we get a good amount of respite! We get respite a weekend per fortnight and on school holidays we get a bit longer, like 7- 10 days at one time!
Which is why Todd is going today for a week because our school holidays start today!
Todd receives 2 different packagers of $ from DADHC (our government service for disabled people and alike), 2 lots of $16,000.00 and a local respite service gives Todd $8,000.00 which comes to $40,000.00 annually for respite for Todd! I guess they done the math, if I was to put Todd into full-time care it would cost the government millions and millions, so I've got 'em by the short and curlies on that one! Plus I'm up on all the rights and guidelines and stuff like that! Anyway I've gotta go iron his clothes and pack his bag now, so nice talking again, next time you'll have to tell me a bit about your life!
Cheers! ↑ |
| Name: rain | Date: Jun 30th, 2006 12:57 AM |
That is the best I have heard of! Good Country. And good mom. Yes, Moms have to fight hard for what they need. Good for you! Enjoy the time off. I should go also and see what my own children are up to.
Have fun ↑ |
| Name: Kim Mori | Date: Jun 30th, 2006 1:09 AM |
About Child Gates!!
Well I'm the woman to talk to when it comes to gates and barriers!
Pool Gates are strong and easy to install- all are child proof, some have keys!(australian standards are)
For short periods we also move furniture and use that as a gate or barrier etc!
We also have sheets of ply wood as removeable barriers! Put locks on all inside doors to minimise stress etc, have dead locks with the key put on a nail above doors- makes life a hell of alot less stressful when it comes to finding the right key for the right door!!! We are in the process of getting another house and what we are going to do in this house when we get it is, put a pool fenced area inside the house somewhere central, as Todds safe play area and we are going to have one put in the back yard(bigger area to play) so we know he is safe at all times! Which will allow the rest of his family to have a life and not constantly be chasing, watching, supervising, playing, just having to be right there all the time is so draining! It will be great to be able to have people over for a BBQ or drinks etc and know that Todd is safe and happily playing in his safe play area with his safe toys, and we are right there watching him having fun too!
Cheers! ↑ |
| Name: Kim Mori | Date: Jun 30th, 2006 1:16 AM |
We don't call it "The Lucky Country" for nothing!!!! We are very, very lucky!!!!
Cheers! ↑ |
| Name: rain | Date: Jun 30th, 2006 3:12 AM |
| I sent her over here to read your post. I am sure you could be of great help to her. Your attitude is so good. I hope it might be contagious. ↑ |
| Name: tashia | Date: Jun 30th, 2006 7:49 PM |
| HI well I'm the new mom that needed the advice on gates and that sound like a realy good idea for out door play as well as the bolt locks for when mine get alittle older. It's hard to stay one step ahead sometimes! ↑ |
| Name: Kim Mori | Date: Jul 1st, 2006 2:01 PM |
Hi Tashia!
I hope I was of some help for you! If you ever wanna talk about anything, just let me know, hey!
Cheers! ↑ |
| Name: Kim Mori | Date: Jul 1st, 2006 2:06 PM |
Hi Rain!
Thanks for your support! It feels good to help others, even if it is in small ways! I have so much to say!
Cheers! ↑ |
| Name: rain | Date: Jul 1st, 2006 5:50 PM |
Hi Ladies,
Talk away Kim. We could all learn form you. ↑ |
| Name: mike | Date: Jul 4th, 2006 8:40 PM |
hi know how u feel we have 15 yr old son.and been through the same things.yes its a nightmare.he has autisim with behaviour problem?[understaement of the year]
to hell and back and some at min we are in to girls blonde long hair any age.forget the chat up line and getting to know the person he wants a shag.and says so?though he hates being touched let alone get intimate with someone.we are trying to get him in to a collage at min .though the only sutible is miles away
and is still classed as a school hence problem on who is paying for this as one group pays till he leaves at 16 and other wont pay till hes 18 we seem to have a gap.no one wants to pay.
but these are the life and times of us we will fight on till someone gives in.would love to chat with someone in same position every day is a new dimension,getting better with each passing day.my name is mike the wife is carole love to chat. ↑ |
| Name: Kim Mori | Date: Aug 2nd, 2006 12:17 AM |
Hi Rain!
We had that Doctor's appointment yesterday, all went well and Todd was in full form! He said he does believe that Todd is Autistic even more so after watching him in the 2nd visit! We just chatted about life he asked Matty a few questions too and told Matt that he thinks Todd is being a bossy big brother to Matt at times, he seems like a really nice guy! He can see what we are saying and we're on the same wave length, which is great because we really need a parternship! He asked us if he could wave the magic wond what would we change about Todd? 3 wishes only- his aggresstion, his hyperactivity and him getting into his nappy! We talked about behaviour theaphy and getting Todd into a program at DADHC, which I've already had a meeting with the lady last year, but things might be alittle different with the new diagnoses! The Dr could see how hard our lives must be by just talking to us and if nothing else that's good enough for us, that he on the second visit can put our minds at ease that we are doing a great job and saving our community hundreds of thousands of $$$ a year in caring for Todd, those where the Dr's words! So that always helps when you get a pat on the back from the medical pro's! He also said we should try Todd on Risperdal Quicklets which are tablets that disolve in 5-10mil of water and work with in 20 minutes, for those days when he is just uncontrollable and waiting till 4pm for his daily Risperdal to help him sleep at night is just too far away, so that's going to help us manage him abit better! I know medication isn't always the the best thing, but I think in Todd's case that's part 'n' parcel of his life, sadly enough!
But you never know, it is the 21st Century!!
Cheers! ↑ |
| Name: jacksmom | Date: Jan 28th, 2007 5:03 AM |
Jack's story....
After the 12 mos. vaccines my son gradually slipped into autism. He was head-banging, hand-flapping, twirling, lost speech, lost eye contact and he just withdrew.
Now two years later.... no head-banging, no twirling, no flapping, has eye contact and is starting to verbalize again. And... he has Down Syndrome to boot. :) Yes... even kids with DS get autism. Actually they get it at a higher rate.
What helped him? First I give God praise.... our son wouldn't be here without Him and we prayed and I believe He guided us. Second... supplements. Especially cod liver oil. I recommend Green Pastures CLO with the X factor. Check out Dr. Mary Megson's work on the web. http://www.diet-studies.com/megson.html Our Jack healed gradually... but he is healing. I actually had to make myself GET USED TO him not twirling everything any more!
Also check out Dr. Amy Yasko's work. www.holistichealth.com
We give Jack alot of supps - cod liver oil, probiotic, magnesium citrate, tart cherry and recently we added cilantro. He takes some other things too but each child is unique. It helps to find a good naturopathic MD or chiropractor. Don't use supps until you research things for yourself. Cilantro for example...should possibly not be used until some other detox has been done.
Don't give up. There is hope! And... I will be frank here.... many mainstream doctors know squat about how to heal autism. Don't let that throw you. There are people who do know how to help. God bless you! Love, Jack's Mom :) [email protected] ↑ |
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