What do I need to know - quirks, sensory sensitivities and our paed appt.
Hi everyone.
I've mentioned a couple of times on here about my DS who is 5 in July having a big bunch of quirks and sensory issues. My main concern over the last 3 years has been his eating - make that severely limited diet.
I worry about his diet and his growth and it's long term implications which is why I've fought for 3 years to be heard.
I've now been given a referral for a paed and I know that everyone is looking at a possible spectrum diagnosis (which I'm totally fine with! ), but I was wondering what information people who have been in my situation might have for me.
I've had my GP mention possible funding and support groups and obviously won't know if he is eligible until after his paed appointment.
What happens if he's not eligible? What is he eligible for if he doesn't meet all of the requirements for an spectrum diagnosis? (I've had someone mentioned something about 6 out of 12?).
How much 'therapy' are we looking at (assuming he is only mildly on the spectrum which is where I and a child psych believe he is)?
What therapies would be involved?
Does the funding cover all of your costs or are you still a fair bit out of pocket?
I'm not going to pretend I know a lot about Autism etc, I don't. There aren't any other kids at his Kinder (that I'm aware of) that are on the spectrum officially, and I don't know anyone locally or IRL that has an Autistic child. I also live very rurally, in farming country about 80 kms drive from the nearest regional city in VIC. I have no idea how much our living situation will affect our journey at all.
That being said, if he's not classed as being on the Spectrum, I'm also totally cool with that. I'm looking at going to an OT before we see the paed (we have a paed appt in August, although I'm going to try and get a referral elsewhere) to try and start with this food aversion/sensitivity issue.
I feel like I'm nowhere at the minute. I feel like I've had confirmation from my GP and various other specialists who I have spoken to over the phone, that my DS is not quite what most people would describe as 'normal', but I don't have any real answers either and whilst I'm not worried about him in the short term, I am worried about the long term. I want his food issues sorted asap as they are my biggest concern, but I'd also like some strategies to help DS and us as a family cope with things like his outbursts, and his sensory sensitivities.
If anyone has any advice at all, I would really appreciate it.
Just wanted to bump this. I know there are lots of lovely people around who will have little snippets of advice for me Thank you to those who have PM'd.
When you say a severely limited diet, what do you mean? My DD2 has a shocking diet. She will eat sausages, frozen peas that aren't heated, toast, plain sandwiches with ham or peanut butter but nothing else, plain pasta, cheese but only if its grated and drinks milk. She eats absolutely no vegetables except for the peas - can't even get her to eat things like McDonalds fries. As far as fruit goes she will sometimes eat bananas, loves watermelon, red grapes and very occasionally will eat a pear. That is literally it. When I have one of those days that I push her she will either have a melt down, or will try and eat it but vomits it straight back up. We have been seeing a specialist paed with her for nearly 18 months now and he is aware of her diet and says while its not ideal in terms of what the rest of the family wants/likes, its not something to be concerned about. She has no variety in her diet, but is able to meet her daily nutritional requirements.
She has several indicators but not enough to officially be classed as being on the spectrum. Like you I fought for a very long time to be heard - mostly I was told she would "just grow out of it". We still don't have a definitive diagnosis, and because she isn't on the spectrum no funding is available to us so I can't give you any advice in that regard.
Good luck. I hope you get some answers or a way forward at least.
I'm not sure if I can help you, but my DS who is 2, has very limited foods that he will eat too, to the point of me worrying about it and I suspect he is low in iron as a result of this. We have just been to see a developmental paed who has confirmed he is delayed in most areas, such as speech (he has 3 real words, rest id jargon) and role playing/imaginative playing. I suspect he has sensory issues, but so far the doctor has not indicated he is on the spectrum, although he has some more testing to do on him at the hospital to see where he needs help the most. The developmental paed we went and saw specialises in ASD and we had to wait 5 months to see him. I don't know if I helped you at all, but I just wanted to say that I was glad I took him to this doctor because I felt like time was passing me by and I needed to know if my DS needed help from anyone. GL with your DS hun xox
Chicken nuggets (can be fussy to specific types)
Yoghurt (only plain vanilla - no fruit or lumps)
Chips/Fries/potato gem type things (Again specific types. Won't touch roast potato/mashed potato/wedges etc)
Cheese (only highly processed home brand cheese slices. He refuses any other type and screams in terror at shredded cheese)
Hommus (can be fussy with certain brands)
Multigrain bread
Strawberry jam (only on toast, extremely small amounts and very rarely - no butter or marg)
Milk
Juice
Frozen fruit puree "icy poles"
Fish fingers (VERY rarely)
Sausage rolls (VERY rarely - not in the last 12 months)
Museli bars (strawberry flavoured, yoghurt covered ONLY - homebrand from woolies only)
Junk (lollies, cakes, icecream,donuts)
No fruits. No vegies, No pasta, No Rice, No sauces.
DS is unable to meet his daily nutritional requirements with his current diet and I've tried EVERYTHING there is to try (purees, hiding in other foods, force feeding, only offering the foods he doesn't like. Nothing works and he will go days without eating to avoid having anything he doesn't like. He cannot stand the texture of most foods which is his issue, rather than the taste itself, and he refuses to touch things with his hands, freaks out when made to hold something like watermelon and has a huge meltdown - This is MUCH more than fussy eating )
Geez. I thought I had it hard! I think its texture a lot for DD too.
Hopefully your appt tomorrow will shed some light. Its so frustrating when you know that something's not right and you can't get any help to find a way to deal with it
I agree it sounds more than fussy eating. If your on a wait list then ask to go on a cancelation list as it might get you in sooner. Also maybe try seeing a psychologist who can give you some direction as to behavioral therapy.
For funding, if he receives a diagnosis of an asd you should be eligible for fahcsia funding of $12000. It doesn't go far but will give you a jump start in getting therapy up and going. If you can learn the therapy yourself this will save costs and benefit your ds a lot. If you can get to Melbourne, try the people I suggested. They may be able to assess him and write a program for you and help with all the concerns you mentioned.
When you go for the assessment/diagnosis take his baby book, it's really helpful to jog your memory as you will be asked a million questions about his early development and milestones.
On my phone and typing what ever I can think of so hope that all made sense!
What do I need to know - quirks, sensory sensitivities and our paed appt.
), but I was wondering what information people who have been in my situation might have for me.
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