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[HealthHomeHappy]

Hi! I've been lurking, but thought I'd introduce myself and start posting sometimes

My little one is 3-1/2 and has developmental delays, hypotonia, and (non diagnosed) SPD. I brought her in for an ASD eval when she was about 22 months and still not walking, not making eye contact, not talking. She was clearly missing her milestones by then, until then I just wanted to wait and see what she would do on her own. I thought she was ASD, but they said she wasn't because she did some pretend play. I still have been mostly following ASD 'therapies' and stuff to learn how to parent her, and it seems to be effective.

So far we've been doing the GAPS diet and floortime/sonrise at home. She was in OT and ST and PT, but I pulled her out for the summer because it really wasn't working for her. I was more effective at home and at the park. I do like our therapists, though, because they tell me what to work on next, and that's really helpful. We do/will homeschool.

I hope I'm not offending anyone when I post- I honestly have no idea how to be politically correct when dealing with special needs issues. If I am, just message me and I'll correct it.

I'm kind of surprised at how much there is out here (in our area at least) for specialists to work with special needs kids... and equally suprised at how much I have to push people to talk to me like I can actually make a difference in my kid's life! The developmental ped is both surprised that she's made so much progress, but pretty sure that the diet she's on has nothing to do with it (but she's okay with not vaxing so we'll stay with her). I've been asking the therapists for book recommendations since we started, and they don't ever recommend anything. I've finally found some good ones, but you'd think they'd have a list of book recommendations!

So that's us. I'm mostly just looking for what works for other people I saw Sensational Kids and The Explosive Child recommended here, both great books!

[SashaBreeze]

Welcome.

Two books I would like to recommend is Sensory Integration and the Child by A. Jean Ayres it is a really, really dry book but soooo great for understanding the nuts and bolts of SPD.
The other is Raising a Sensory Smart Child by Lindsey Biel I love this book because it is super easy to understand and takes time to explain why therapist do the things they do and how it helps your little one.

Sounds like you are doing a great job, keep it up.

[BookGoddess]

Welcome to the SN Board..

Kids on the spectrum do have pretend play so that by itself is not a reason to exclude an ASD diagnosis.

The Out Of Sync Child Has Fun is a good book with a lot of fun things you can do with your child to help him/her.

[sbgrace]

Welcome!

I was always a little confused because my kiddo fit but didn't fit autism. His final dx. in that area was pdd-nos because he fit but didn't. This link explains that pretty well in real world language with examples.
http://www.bbbautism.com/diagnostics_psychobabble.htm

As it turns out my son had a metabolic condition that affected his mitochondrial function. Special diet changes that went too high in fat did a lot of damage. We didn't find out he had it until 3.5. I wrote about signs of that here. My son also had GI issues, though, in addition to the developmental, autism, and hypotonia things. http://www.mothering.com/discussions...d.php?t=734501

[HealthHomeHappy]

Originally Posted by SashaBreeze

Welcome.

Two books I would like to recommend is Sensory Integration and the Child by A. Jean Ayres it is a really, really dry book but soooo great for understanding the nuts and bolts of SPD.
The other is Raising a Sensory Smart Child by Lindsey Biel I love this book because it is super easy to understand and takes time to explain why therapist do the things they do and how it helps your little one.

Sounds like you are doing a great job, keep it up.

Thanks! I'll see if our SN library has them. I'm going tomorrow anyway Raising a Sensory Smart Child sounds like it would be good for what I'm doing at home too, I always love more ideas!

[HealthHomeHappy]

Originally Posted by BookGoddess

Welcome to the SN Board..

Kids on the spectrum do have pretend play so that by itself is not a reason to exclude an ASD diagnosis.

The Out Of Sync Child Has Fun is a good book with a lot of fun things you can do with your child to help him/her.

Yeah, I read through the criteria for asd dx before I had her evaluated, and I felt she met the qualifications. She wasn't two yet then, though, and she hasn't been reevaluated. She's making good eye contact now (this is very much tied to her diet), and starting to share experiences after lots of working with her. I still say she's ASD when she's having a meltdown in the grocery store, but I feel funny calling her asd places like this since she doesn't have a dx. I'm not really feeling the need to push for a dx, though. Maybe I'll just diagnose her myself and stop being so unsure of myself LOL

I have Out Of Sync Child out from the library right now! I'm going to look through it again before it has to go back, thanks for the recommendation

[HealthHomeHappy]

Originally Posted by sbgrace

Welcome!

I was always a little confused because my kiddo fit but didn't fit autism. His final dx. in that area was pdd-nos because he fit but didn't. This link explains that pretty well in real world language with examples.
http://www.bbbautism.com/diagnostics_psychobabble.htm

I just looked through that, and I think she'd even qualify now. The only iffy one is the repetative behavior- hers have been poking eyes while saying 'eye', opening and closing doors (for over two years now, but this one she will stop/can resist if something more interesting comes up), pulling her brother's hair while nursing (since he was born 19 months ago! She'll 'hear' him nursing from the other room and come to do this no matter what else is going on, with the exception of a couple times as we switched her diet around), obsessions with shoes. Not the normal 'line up cars' thing or stims like flapping hands.

I'm not sure why they were so hostile to me, they were pretty annoyed that I would bring up what they called "the A word" and underlined on her eval that she was NOT (three underscores) autistic. I think I was 24 at the time, maybe they just wanted to prove me wrong since I brought her in thinking she had ASD and I didn't have any initials after my name? I had looked at a checklist similar (or the same one) prior to making the eval appt.

Originally Posted by sbgrace

As it turns out my son had a metabolic condition that affected his mitochondrial function. Special diet changes that went too high in fat did a lot of damage. We didn't find out he had it until 3.5. I wrote about signs of that here. My son also had GI issues, though, in addition to the developmental, autism, and hypotonia things. http://www.mothering.com/discussions...d.php?t=734501

I think I've read about your son's condition (hopefully that doesn't make me sound like a stalker!) I skimmed the post again, I think I had ruled out mito issues because she gains/grows well and she doesn't really fatigue too too easy for how low tone she is. She's getting better on the GAPS diet (able to do ladder type things at the park- climbing a 6 foot ladder dozens of time last week, better balance)

We do have the motor skills issue, atypical development (she has scattered skills in what she's interested in, like sewing or cutting with scissors, but it's my understanding this isn't uncommon with ASD).

What would be the testing needed to find out more about mito? Is it something a regular ped would do? We've seen a naturopath a few times, but it's really expensive and we can't do it often, or pay for many tests out of pockets.

So far our dev. ped. has offered a brain scan (I can't remember if it's an MRI or EKG or what the initials are) but she'd have to be put under, so I said no, and I'm not thrilled with the idea of the radiation either. Also, she said that wouldn't change the therapies, they'd still do therapies based on how she's acting. I didn't think it would be worth it just for diagnostic information.

We've also been offered genetic testing, but she said that wouldn't help my LO, it would just determine our likelihood of having more children like her, which doesn't matter to me so I declined that as well.

Sorry to go on and on! It's nice being in a place where people aren't weird.

[sbgrace]

It sounds like you had a poor evaluation. I don't think that's uncommon but I'm sorry it happens!

You've already figured out that if you see autism type areas autism type interventions often help whether she fits the criteria (or they think she does) or whatever!

On the mito stuff. If you have a cooperative doctor you could ask for a metametrix comprehensive urine profile and see if any metabolic markers come up. That's probably what I would do in your situation when I could afford to do it given the hypotonia. Our insurance did cover that lab though at an out of network rate. However, if she's healthy and doing well I think you're in good shape. It's good, though, to be aware of the signs when you're dealing with a hypotonic child who doesn't have a diagnosis to explain the hypotonia. Metabolic/mito kids can certainly grow well. The hallmark of mito is three different areas affected. But fatigue is generally present so if she's got good energy and she's healthy and etc. just keep it in mind in case anything changes.

[HealthHomeHappy]

Thanks! I will keep that in mind, and I'll ask about the urine profile either this fall at her appointment or sooner depending on whether I can get an appointment or not. I've heard that there are supplements for mitro that are helpful.

I'm glad that you think it was a poor eval, I usually do pretty well going against the grain, but this sort of had me doubting what I thought. Is there any reason we should push for a dx? We're homeschooling.

[LynnS6]

Welcome!

Just another thought to throw out: ASD in girls often presents differently than in boys, so it's not necessarily a foregone conclusion that she doesn't.

The benefits to a diagnosis are that you can get proper treatment or decide whether you want to get treatment at all. I think it's helpful too to direct my reading and figure out what works for my kid. I'm not so interested in the label, but sometimes a label makes it easier to get services. It was very helpful, for example, to be able to tell ds' first grade teacher: "He's got a fine motor delay, please don't make him redo his worksheets because they're not neat enough."