Developmental Delays : Our Story (Not a Question)

I get you didn't post a question but I am still going to suggest you get new therapists!

Sorry but all four of my kids have ADHD, the third PDD or autism spectrum. There is nine years between my middle two so while the older two were going to their psychiatrist Andy was along and none of them would touch trying to diagnose Andy because you just can't.

Then to read this it looks like, for some strange reason, they are trying to make the symptoms fit the diagnosis instead of finding a diagnosis that fits the symptoms. All along they shouldn't be diagnosing anyway or even pretending to diagnose.

I am only saying this because one, you are throwing information out here as information that people should look out for. No one should look at this and find it in their child and have them tested for autism. The other is I am concerned that you have bad advisers that will actually harm your child developmentally.

Your doctors say they won't diagnose, listen to them. I worked closely with Andy's doctors and educators. I made sure the educators were listening to my doctor's orders. Until Andy was six he had no formal diagnosis. He had enough that the educators worked with the symptoms and really that is all they should be doing.

I am also saying this because Andy got, bar none!, the worst early childhood educator on earth! She would ignore the doctor and the IEP and thought she knew more than everyone. If she had been allowed to do that unchecked, and the parent is the one that checks, she would have done some serious harm to his development.

You also need to know that everything you described describes a child with ADHD as well. Actually the people coming into the house, Andy is my only child that would react to that.

Of course I may have read this wrong, I do have a few disorders myself. :)

<<hugs>> and sending positive vibes your way.

<<More hugs>>

I agree with Jo (Flaming Turnip), and I also want to add that even though you have made a great first step of getting your daughter the help she needs, please remember to always trust your instincts. Nobody will know your daughter like you do, and if something doesn't feel right with you, don't be afraid to get another opinion.

Good luck with your journey. Please continue to keep us posted!

L., I'm sorry if my answer is short...I'm just not long winded....

I detest labels. I can't stand professionals labeling sweet, little ones so early on in their development.

What you describe is pretty much me to a T when I was that age and I am a fully educated, functional mom of 3. I didn't crawl. I didn't walk until the age of 2. I didn't speak until 3, when one of my first phrases was "And furthermore...you should consider...." My mom dropped a kitchen plate on her toe when I said it.

Also, I have a GF with twin boys, who were just like what you describe and the Pediatrician was trying to label them too, and I just told her to make sure she loved on them, and fed them healthy, nutritious meals, and give them a chance to mature. We all mature at different rates and for the most part we all catch up in the long run. And her twin boys are lovely, little humans now. Please, don't label your daughter yet.

And just yesterday I listened to Glen Close on a CBC radio station:

http://www.cbc.ca/thecurrent/episode/2013/06/13/glenn-clo...

She spoke of a woman who is a PHd at USC Law School, and the professionals told her mom that she would be flipping hamburgers at best one day. But she's brilliant and also manages her health issues well.

So keep your chin up. Plug into support as early as you can and it will work wonders.

Has your daughter been evaluated by a Developmental Pediatrician yet?

(P.S. - I know the link is about mental health, so don't get upset with me....the concept in managing our health is the same)

Did your daughter have any other common 'key' marks for autism?

My daughter is a generally happy, creative girl. I have been concerned with her from a young age that she had autistic tendancies. At birth, she didn't make a sound for the first 20 hours until we were leaving for home. At 8 hours, she smiled a huge smile when she met her Grandpa. We have the picture!. (every kid loves him)

Walking on toes, prefers to play by herself, will play somewhat well with others. Some of these things she has outgrown with age. She tends to play better with boys and older girls than girls her age. Although she does have a girl BFF in class. They are a hoot and think the world of each other.

As for the toe walking, that is very much approved at ballet class :)

Please don't sad, or jump hook, line and sinker on the Autism bandwagon. I am not saying she doesn't have some tendancies. I am not a doctor and I have not met your daughter, 20 months IS a very young age to diagnosis this.

I would definitely wait and get other opinions.

Oh, and ASD or not, the tantrums will come. Just give them time momma. :)

Dear L.,

Thank you for sharing this. It's not for me to say whether your daughter is autistic, but if she is, this sounds like a fairly atypical manifestation.

I guess I would just encourage you to keep searching, keep seeing specialists, etc. The autism spectrum is so diverse, it's possible she fits in there somewhere, but I guess I'd encourage you to be open both to the possibility that she's autistic and to the possibility that she's not -- which I recognize is easier said than done.

P.S. I like the Pretenders too ;)

This isn't worth much but just had to say your daughter sounds a bit like a girl in our neighborhood. She is on the spectrum but in K and doing great and I've always noticed how happy she is. I know she has some sensory issues that can cause her to melt down but what really stands out is how happy she seems to be all the time. Everyone loves her and like I said, she's doing great.

Thank you for sharing your story. So much of it reminded me of my GD who is now 12. Like your daughter, she had no interest in other people. They could come and go - she could care less. She never responded to her name; was late to walk; no interest in toys. Like your daughter, she found her one thing, for her the tv remote, and she would carry it around constantly. There was one tv commercial song that would cause her to run to the tv whenever she heard it. I can't remember now what it was - it's been a while!

Unfortunately, her mom, dad and other grandparents turned a blind eye. The school did likewise. My poor 12 year old GD STILL does not have a diagnoses and likewise no services.

Your daughter is very lucky that you are on this already. She sounds so much like my GD that I'm going to go out on a limb and say that I think you can expect progress and that with your love and support she will have a great life!

I will PM you.

Updated

I will PM you.

Bless your heart, L.. I know this is all very hard. You are very brave and that's a huge thing. There are moms on here who, when told bad news, just put their heads in the sand, and it's so great that you can tackle this head-on.

I am a little confused as to why they aren't doing speech therapy twice a week. That's much more common. Do you have a home program? That part is incredibly important.

Make sure you get plenty of rest - sleepless nights won't help. Hugs~

L., I know what you are going through and you can do so much to get her back on path!! First, forget all the negativity. She does not have a diagnosis. The EI therapists threw around ASD with my son when he was 2 and all these horrible things and guess what? Today he is a healthy, smart, kind, and totally neurotypical child!! Yes, I got him the therapies they suggested but I also stopped immunizing, removed dairy products (which for you might be other foods) went totally organic with fruits and veggies, removed all possible toxins from the home including cleaning products and all "fresheners", and started giving purified fish oil in addition and a multi-vitamin everyday. I worked with him everyday and would watch the Baby Bumblebee videos. I also prayed everyday. If you do not have the autism diagnosis yet, you can change her course. Is there a "social skills" class she can take through EI? Even if she does get a diagnosis, children can recover or at least improve significantly!