Advice for waiting period
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| Mon, 10-03-2005 - 7:12pm |
My son Jake is two. Several behaviors, and red flags have me concerned that he may have PDD-NOS, possibly even autism. I've taken the quiz on childbrain.com, and it comes out as him having mild PDD. However, when I bring any of my concerns to his pediatrician, or speech therapist, or developmental therapist they just seem to dismiss it as nothing. He has been diagnosed with apraxia, expressive language delay, and sensory integration dysfunction - which is what he receives services for. No one seems to think it's anything more than that, except for myself. There's just too many symptoms for it not to be more. So I have an evaluation scheduled - atleast I'm on the waiting list for one at Kennedy Krieger. But what do I do in the meantime? I have no idea how long the wait might be, and I'm going nuts worrying? I keep hearing about losing precious time, and wonder if there's anything I can be doing while waiting for a diagnosis? Any suggestions, advice, or information you can offer would be greatly appreciated.
Thanks.
Jen

HI.
I so know how you feel. My DD is 2 and we finally have our Dev ped appt next week, made it a year ago!!!
My dd has made great strides in the past year - more than I ever thought, so my advice to you is to hope and pray as the wait contines - his progress does as well.
I took the childbrain quiz too - came out as No PDD, she scored a 35, but I have my suspicions, everyone else, including 2 psy's think I am a bit crazy I think. They think I am just comparing her to much to my first DD who was always way advanced and still is. It's so hard not to comapre.
My advice - as hard as it is, I know, is to just try to do your best to help and encourage him and enjoy these toddler years, no matter hwat the dx, he is who he is and could still do great things even with a PDD dx. I have to remind myself the same thing daily, easier said than done : )
Dear Jen,
Mild PDD IS hard to catch and diagnose, esp. when our kids are as young as your son is. The good news is whether or not he has that dx coming someday, you have started therapies already. How is he doing with the therapies? Are you seeing improvements? You don't mention OT, yet he has a dx of SID. Do you mean OT when you say dev. therapist? We had play therapy and speech therapy 2 xs a week when our son started his barrage of therapies at 3, plus therapeutic daycare 4 hours a day. We had a whopping 4 hours a week of OT, and that sure was helpful. We saw astronomical leaps in ability, muscle tone, focus, wellbeing and interaction during that time. Speech improved rapidly as well!
BUT we did not get the dx of PDD-NOS until our son was almost 7 years old, and his dx is considered borderline. Turns out there was very little we missed in therapies by not having the dx. On our own, we did diet modifications (which helped), home sensory diet, eventually added other forms of therapy such as RDI, small groups, sports therapy, and now talk therapy with a PDD specialist. All have contributed, he is growing and learning at an amazing rate still 5 years later!
What I want to say is that you have begun the process of providing the extra help that your child needs to grow and develop in a more timely way, and the dx itself is an ongoing process, not exactly written in stone. You are doing a great job, Mom!!! Keep your son loved up and as calm and happy as possible. Provide fun stimulation, not too many overwhelming situations (no circuses quite yet, etc.) Hugs and kisses and cuddling, they are only so little for such a short time. You will learn more soon and then your next step will be clear.
Mine still crawls onto my lap for a big huggle-fest, but I can hardly breath, oh my Gawd!
yours,
Sara
ilovemalcolm
Read "The child with Special Needs" by Stanley Greenspan and learn about floortime therapy. This will help him regardless of the DX.
Here is the toughest advice to follow:
Try not to think about it too much. It is in the works and there isnothign more you can do right now to change things or to hurry them along. Try to enjoy your son, fill your days with things you both enjoy and just let the time go. It will crawl if you obsess, and DX or no DX enjoying our kids is the main reason we had any!
You ae well ahead of the game here, and as Sara pointed out, you have a good program in place for him already. Relax. You are doing everything right.
-Paula
visit my blog at www.onesickmother.com
Jen,
I didn't like sitting around waiting either! What I did was read, read, and read! I did lots of computer searches too. Just updating myself on everything! It really did help too, because when we got the dx, I was up on the lingo!! (I wonder why Nathan is so obsessive...hhhmmmm lol)
I tried to enjoy my boys and go on with life, but I couldn't help obsessing and worrying about him. I also just kept teaching him things, and working on his speech at home. Whatever it was that he had.....I was determined to do the best for him at home. It was the only thing I had control over at the time!!
By the time his appt came around, I was ready. Not that it wasn't a shock.....it still was! To actually hear the dr say those words. But I had already done so much reading about the spectrum, and had even starting posting here on the board before he was dx'd, so that helped alot too.
So, if you can't stop worrying about it, like I did.....do as much research that you can. There are alot of books out there and lots of info on the computer too. And posting here helps as well!!
Michelle
Hi, Jen -- I HATED the waiting part, too. But here's the good thing -- he's getting services already so he is unlikely to lose ground during this critical time (if, indeed, he has PDD). But if you're like me, you want to do something more in the meantime. My friend who is a school psychologist and worked with lots of kids on the spectrum recommended the Greenspan book "The Child with Special Needs" (I think that's title -- anyway, it's Stanley Greenspan) and his approach to floortime. We began implementing it at home on our own a month before Calvin's appt. and saw immediate results. It's easy fit into your life and, really, any kid would benefit from this type of interaction -- spectrum or no spectrum. And really that could be said of any of the intervention practices to some extent. So in other words, it won't hurt.
As for others dismissing your concerns, press on. If you are concerned, then it should be taken seriously. Our pediatrician and speech therapist both didn't think Calvin was autistic (we took the childbrain quiz and got "mild PDD", too). But as it turns out, he is. Mildly so, but still. And I'm sooooooo glad he was diagnosed because now he is getting ALL the services he needs.
I hope that helps -- good luck with everything. Let us know how things are going.
Kellie & Calvin (2 yo, PDD, hypotonia and cute as a button -- looks just like Calvin from "and Hobbes")