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Joeys_Mom
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07 Dec 2009, 2:06 pm

Hi all. My name is Wendy. I'm a stay at home mom of 2 wonderful kids (Joey, 3 yrs. Lexi, 1 yr), and am finding battles every where i turn.
Joey is far from the typical kid around here his age. He doesn't talk (he babbles on about the same level as his sister), he doesn't seem to comprehend at the level of his peers. He gets very easily upset, and often avoids playing with other children in favor of playing on his own. Joey never walked until he was almost 20 months old. He is a very happy boy, but throws tantrums like I've never seen in my life! When he's throwing a tantrum, he tends to bang his head repeatedly until we interveen. He doesn't respond well to new or stressful situations (a new worker at the casual care center we go to at the MFRC resulted in an afore mentioned tantrum). He avoids new people, and will not acknowledge that he's being spoken to when a new person is around. Joey also lines up his toys constantly. Blocks, cars, mega blocks, anything. They'll be lined up.

I really need some advice on how to deal with my Doctor. She insists that everything is fine. That I'm worrying over nothing, that "he'll do it all in his own time". I had to tell her that I was going to seek a 2nd opinion before she would refer me to a hearing and speach clinic (for which there is a several month wait), and she won't refer me to the Autism clinic at the local children's hospital (IWK) for what she calls "needless testing"

Any advice or words of wisdom would be greatly appreciated!
Wendy



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07 Dec 2009, 2:18 pm

Welcome to WP!


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Marcia
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07 Dec 2009, 2:22 pm

I'd get a new doctor.

He's still young, and usually assessments take place when children are older. You already have the appointment for the hearing and speech clinic which is great. (I'm in Scotland and it was Speech and Language Therapists who diagnosed my son). I'd push for an appointment at the Autism Unit at the Hospital. There will probably be a waiting list for that as well, but if you are on it then you can do some more research of your own, and start keeping notes of your son's behaviour in the meantime.

Keep pushing the doctor on this one.



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07 Dec 2009, 2:53 pm

Wendy, I forgot to say "Hi and welcome to WP!" :D

As to your question about whether it is autism - from what you have said here, and my own experiences of having my son assessed, I would say that it is certainly a strong possibility. The speech delay would rule out a diagnosis of Aspergers, and if your son is on the Spectrum I'd say that he would probably be diagnosed with High Functioning Autism, as a speech delay seemed to be separating criteria between AS and HFA.

I suggest that you post this on the Parents' Forum here as well, to maximise replies.

As far as dealing with your doctor goes, it would be helpful for you, if you haven't already, to have a list of "red flags" for autism which you can copy and give her. To be honest, I would have thought that the speech delay alone would have been reason for concern.



Joeys_Mom
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07 Dec 2009, 3:19 pm

Hi all. My name is Wendy. I'm a stay at home mom of 2 wonderful kids (Joey, 3 yrs. Lexi, 1 yr), and am finding battles every where i turn.
Joey is far from the typical kid around here his age. He doesn't talk (he babbles on about the same level as his sister), he doesn't seem to comprehend at the level of his peers. He gets very easily upset, and often avoids playing with other children in favor of playing on his own. Joey never walked until he was almost 20 months old. He is a very happy boy, but throws tantrums like I've never seen in my life! When he's throwing a tantrum, he tends to bang his head repeatedly until we interveen. He doesn't respond well to new or stressful situations (a new worker at the casual care center we go to at the MFRC resulted in an afore mentioned tantrum). He avoids new people, and will not acknowledge that he's being spoken to when a new person is around. Joey also lines up his toys constantly. Blocks, cars, mega blocks, anything. They'll be lined up.

I really need some advice on how to deal with my Doctor. She insists that everything is fine. That I'm worrying over nothing, that "he'll do it all in his own time". I had to tell her that I was going to seek a 2nd opinion before she would refer me to a hearing and speach clinic (for which there is a several month wait), and she won't refer me to the Autism clinic at the local children's hospital (IWK) for what she calls "needless testing"

Any advice or words of wisdom would be greatly appreciated!
Wendy



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07 Dec 2009, 3:36 pm

You need a new doctor.

If your opinion as a care giver. who is able to observe the child 24/7 isn't respected enough to at least have him tested, you need to find someone more responsive. Even if it isn't autism, it can't hurt the child to have him tested, or at least observed by someone with experience in the field.



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07 Dec 2009, 3:50 pm

Willard wrote:
You need a new doctor.

If your opinion as a care giver. who is able to observe the child 24/7 isn't respected enough to at least have him tested, you need to find someone more responsive. Even if it isn't autism, it can't hurt the child to have him tested, or at least observed by someone with experience in the field.


I agree, you need a new Dr.


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07 Dec 2009, 4:34 pm

It sounds to me like he could very well be (95% sure). You need to get a new doctor if she refuses to refer your son for testing. If possible, go ahead with the testing without her referral if you are allowed to do so. Early intervention is the most effective technique for teaching your child. I recommend getting him into a program right away.


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07 Dec 2009, 4:36 pm

The most important thing is that you love and accept your child. Acceptance is the best cure.


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cyberscan
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07 Dec 2009, 4:41 pm

Willard wrote:
You need a new doctor.

If your opinion as a care giver. who is able to observe the child 24/7 isn't respected enough to at least have him tested, you need to find someone more responsive. Even if it isn't autism, it can't hurt the child to have him tested, or at least observed by someone with experience in the field.


I agree with Willard. Even though I generally don't recommend official diagnosis for adults, I do highly recommend diagnosis for children since they can get need treatment, training, and services at an age when they are most effective.


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Aoi
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07 Dec 2009, 6:50 pm

I agree too. Definitely get a second opinion. An autism spectrum disorder is one of various possibilities, and you are right to seek proper evaluation.



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07 Dec 2009, 6:55 pm

Well, your doctor does have a point. Kids often have speech delays and before everyone got so worried about autism no one really worried about those delays. It was just how some kids were. I remember when my friend's son was 3 and not talking, some 20 years ago. He had his own effective way of communicating so everyone could tell he was alive in there somewhere and autism was never mentioned. No one worried.

That said, your comments have raised a few red flags. Still, I will tell you what I told another poster, and that is that unless there is an obvious impairment or delay that requires early intervention, I don't know how important it is to get a diagnosis at this point. Very young children who are high functioning can be very difficult to diagnose correctly, and the process can be stressful for your child and your family. You could, instead, learn all you can about parenting young AS children, see how the techniques work with your child, and call it good enough for now.

I remember when we asked our pediatrician about possible sensory integration issues we were noticing with our son, and he told us that we were already doing the best type of therapy, ie know your child and respond to it. I remember being a little frustrated by his writing off our concerns, but I've learned that he had a really good point. That time before formal schooling starts is your child's time to be who he is without labels and without being forced into a mold. Getting to know what he needs and responding accordingly is the best thing you can do for your child right now. Mold the world to him, instead of worrying about molding him to the world. The later will happen soon enough.

Most AS kids (high functioning) are fine through the preschool years, and only need therapy or intervention when they enter school. For that, you have a little time, since the process would usually be started one year before.

Some other things you might want to test out at home are sensory issues and food senstivities. A decent number of AS are sensitive to gluten, so you could see how your child does if you try eliminating that for one month. Or lactose. Or soy (my son, husband and sister are all sensitive to soy). See what happens if you cut back on noise or visual stimulation. And so on. Try some of the techniques recommended for AS kids and see if they help.

If you are gut level concerned and not seeing evidence that your child is really bright just unique, then I would pursue diagnosis and consider switiching doctors. I can't tell from your post exactly where your worry comes from, so I don't know how much needs to be done right now. I will tell you that I've watched videos of some of the early intervention therapies and been absolutely appalled - I can't imagine ever forcing my child through something like that. You do have to ask what is worse: the impairment or the "cure," and I find myself wishing those parents had simply allowed themselves to be with their kids, instead of bringing all these strangers in. But I also know that the right intervention, the right testing, and the right knowledge can make a crucial difference. You know your child best, and what he needs. Just don't let yourself get carried away with the panic that currently exists among parents - that does go too far, and that may be what your physician is responding to more than anything she sees in your child.


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07 Dec 2009, 7:45 pm

Joeys_Mom wrote:
I really need some advice on how to deal with my Doctor. She insists that everything is fine. That I'm worrying over nothing, that "he'll do it all in his own time".
keep pushing for assessment. my son's docs said that stuff all the time (no speech delay in his case, but definitely atypical play and aggression) and my son didn't get assessed with NVLD until he was 11.... all those years when he could have been getting help instead of being persecuted by teachers :(

I learned the hard way not to let professionals deter me when it comes to my kids. hours and hours of phone calls and I even had a meltdown in my daughter's doc's office because the clinic they referred me to refused to see my daughter because I would not sit in the same room as my ex who had physically and verbally abused me. it was worth it to keep fighting for assessment. I wish I'd known what I do now when my son was little.



Joeys_Mom
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08 Dec 2009, 10:56 am

Thanks all for the wonderful advice.
I called the Autism Clinic today to find out if a referal is needed to have him seen, and they said yes, but it doesn't have to be from our doctor. It can be from the hearing and speach clinic, which they've already said that they will do for me if they see in him what i have seen. A friend of mine suggested using a video camera and taping him in his "normal environments" so that they can see exactly what it is that I'm seeing every day. Has anyone else done this?
This all being said, they also suggested I speak to the Social Worker for the Autism Clinic about developing a coping strategy in the mean time. I've left a message for her, and hope to hear back soon.

I'm seriously considering looking for a new doctor, but I've been seeing Dr. M. since I was a child, and I guess its my own comfort zone there.

Again thanks for the advice, and I will keep you all updated on our progress.