Autism Spectrum Disorder

Hi there
Thanks needed them very much
How old is your little boy? Can you tell me about dyspraxia, did your little one have any signs as a baby?

Hi Emma
Thankyou so much for talking. I got your message in the inbox but couldnt reply as i was at work I havent quite worked out how to get back in Once I do will email.Ive seen your earlier posts and it looks like you have had a tough road. Im here to support you and others as well. I havent had a chance to even look at a support group Im in Auckland as Im so consumed with guilt its paralyzing. We were on the waiting list to see a Paed through the hospital but it was a 3 month wait so went private instead. Paed said it looks highly likely DS has been affected by alcohol but he isnt prepared to diagnose anything until at least another year. We have a neurotherapist coming tommorrow to help with Connors posture (neurological damage) and developmental delays. Unfortunately any damage to the brain is permanant, it doesnt get better and after reading the long long list of what problems he will probably have has me terrified. But like all children with special needs each one is unique. Paed said that alot of children affected can have autism or autistic like tendencies (communication problems, tantrums etc),adhd,learning and behaviour problems,sensory issues, little or no short term memory blah blah. What sort of challenges do you deal with in your little one? How do you deal with them? So many things to talk about I think no matter what the cause we all feel guilt to some degree? I have to accept that I cannot go backwards and I m no good to my children if I dont pull myself together. This site and the people in here looked like a good place to start. Wish I was in Gisborne!
Hope to chat more soon
Michelle

Hiya
Nice to see you again
Yes the guilt is awful. We have neuro development therapist coming later for 1st visit not sure what they will do. Connor's balance, co-ordination and posture is all screwed up. He did manage to sit up for 15 minutes on the weekend though.
Did James have OT or anything like that to help early on?

Hiya
Well the neuro therapist came gave us some exercises the family therapist said you were worried about the alcohol i said yes she said its only a matter of time probably within the next year and it will show with other development problems,behaviour, learning etc. Its too soon to tell what sort of damage has been done. They gave us some "play" exercises as well so hopefully that will help. Connor is 8 and a half months. What does your OT do with James? Yes I understand the feelings and I dont think they ever go away hopefully will become more manageable with time

kell wrote: Im going to sneak myself in here......... James is nearly 2 and we have known from the day he came home something was not right, he has what we call quirkey behavours. I went to the doctor about them all a month ago, he referred us to a pead, who without meeting us referred us to early intervention, they have met with James x1 and have decided to put him in day care for a few hours a week with an aid to build up a report then we meet with the pead after one month........ In the mean time we are still living with violent meltdowns all day, night terrors, and a boy who wont speak......... this is all such a long process.........does it sound right to the people who have been here???? Im most terrified of them saying nothing is wrong with him, our family is falling apart at the seams. Big hugs to everyone in this boat xxx

Just thought I would post my experiences as this person really brought back the first two years of my daughters life.

My third daughter was a terrible feeder, sleeper, night terrors and a lack of verbal skills and terrible tantrums. Normally I ended up in bruises and she used to head bang anything whether it was a table or a floor or me. She beat her head until she had bruises and once even a concussion. I took her to the drs a lot and suggested she had autism. They told me no as she made eye contact. Finally I got an appointment to have her assessed by the early intevention program (I live in the states) however in the meantime I decided to try my last card and get her hearing tested. This was the our saviour.

The ENT described her behaviour to me just by looking at her throat and said it was her tonsils. She had sleep apnea due to the fact that her tonsils were so large and once we had her surgery we had a different child. Overnight. She had tonsils and adenoids out with grommets. We were the lucky ones. A day doesn't go by that I don't count our blessings. Our family was falling apart due to the stress of having a difficult child.

By posting this maybe it will help someone coming in here looking for answers. For those of you who have autistic children I think you are fantastic. For two years we struggled to keep it together. I will forever have a special admiration for anyone with a special needs child no matter how high functioning.

One thing I did learn was that in the states they beleive that the earlier the better when it comes to therapy etc. So if you think that there is a chance of autism go for it and book the appt.

Hey everyone, you all rock!

Surreal - what a very hard thing to go through when you were never expecting to have anymore bubbies. Connor will be a very special person in your life I'm sure

I just spent a week with my sister and her three kidlets in Melbourne and some interesting things came out while I was there.

Her nearly 4yr old autistic boy is clearly very autistic (but we knew that)!

The paeds have now said that her nearly 5yr old daughter will be diagnosed with aspergers too

Hard thing for my sis to hear as she is only just coming to terms with master 3s diagnosis.

Miss 4 is very high functioning (which is probably why they decided she was fine in the past) but she still has lots of difficulty playing with other children and completely shuts down (goes silent and stiff) in loads of situations (like on a daily basis).

They are going to wait to fully assess her when she starts school next year but have said that her diagnosis is inevitible given that master 3 has autism.

Worst part is that they don't qualify for any assistance as they are NZers living in Oz, they can't get citizenship because they didn't get some visa before leaving NZ (which no-one tells you about) So they are struggling to pay for any help they can get slotted in for (which is not a lot as there are so many Oz children who are higher on the lists for it) on one income. My sister can't go out to earn another wage as the two little ones are so much work with their disorders that they need a consistent fulltime carer. It is all really taking such a toll on them

They would have to come back to NZ and wait a standdown period before being able to get the visa to go back and her DH would lose his job to do that so it is really impossible

They applied for exemption on compassionate grounds with supporting documentation from their Paed and local Autism supporters and received a letter yesterday to say that the Govt is not prepared to support any exemption to them on any grounds given that they are not and cannot easily become citizens.

They are looking into all their options now ie; staying put and trying to do the best they can with the money they have, packing up and moving back to NZ, trying to get some community based funding where they are.

Its all going to be quite a struggle to get some support I think