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Rdmaggie
member
Update
Rdmaggie
member
We took LO to the pedi today. We got a referral to children's hospital for testing. The pedis statement to us was that he would "not label her...yet." I did not ask him his opinion as I felt the referral spoke for itself. He conveyed pretty much what I've felt all along, something's up, but not completely clear what at this point.
the hardest but probably best thing to happen was that dh saw a nt toddler in the office. He teared up, but it was a real eye opener for him. He finally saw what I meant, and understood that LO is definitely different. The nt toddler followed directions, attempted to play with LO, asked questions and waved goodbye. All things LO would has never really done.
At this point we have been told to wait for children's to contact us, I hate that part. He suggested that if they tried to put us off for several weeks to ask for their Cincinnati office. I of course would drive to the moon for answers and help, so that's fine with me, I just hate the wait.
The pedi said to "let her be her", and not to attempt to stop her flapping, q-tip obsession, spinning, etc. I'm wondering what I should be doing in the meantime? I've tried to work on keeping her engaged and eye contact, involving her in more interactive play, and trying to get her to use words to tell me things. I don't want to do any harm by being overbearing,but I also want to do as much as I can. I'm grateful for the support and answers I've gotten here. Dh and I discussed some "safe" people we can share the information with, I just feel to fragile right now to tell my own family. I know this will be difficult for some of them and I am not in a place where I can support their feelings at this point. It is still a blow to me and I'm still breaking down at times but I do feel some relief knowing we are getting help one way or another. Thank you all again... So much and please, any suggestions or recommendations...
This discussion has been closed.
Re: Update
I'm glad your pedi is on board. Don't forget about contacting your state's EI program -- you'll likely be able to get an eval for services faster than an appointment for a developmental evaluation, which can take months.
In Engaging Autism, Dr. Stanley Greenspan outlines his Floortime techniques. It's a really dense book, but it may be helpful to you as you're waiting for evals and services. It's all about meeting a child where they are, using their interests to engage them, and taking little baby steps. She wants to slam a door or stroke q-tips? He gives suggestions on how to use those kind of things to turn them into very basic engagement games.
Keep in mind, though -- what you think of as "engagement" may look and feel very different than what she is ready for right now. You're not going to do either of you any favors by pushing things without the guidance of a pro -- you'll both end up frustrated and upset, and you as the mom are just going to feel worse. (Been there.) Your pedi's advice is good. In particular, I wouldn't try to force eye contact. That can end up being counter-productive.
You're probably doing all the work right now. Ease up on yourself. Take a breath. Help is coming. I know that feeling of desperate desire to do something, anything. But this is a process, and just because you don't know what to do right.this.second. doesn't mean that you won't soon. My pedi, right after we got our dx, told me that it is OKAY to take a couple of **months** for research and interviewing your therapy options. And we did take about that long, and I felt so much more confident that we were making the best choice for DD1's needs than I did when we first came out of that dx meeting and I knew nothing about treatment options, what our choices were locally, etc. Better to take the time and get the right things in place than to take the first thing that comes along just because you're desperate to get started. These things don't happen overnight, and you don't start seeing progress overnight, either.
That said -- I like this site for getting some ideas on a variety of types of games.
https://sites.google.com/site/autismgames/home/games-pages
DD1, 1/5/2008 ~~~ DD2, 3/17/2010
First of all, thank you all again! I'm working off my iPad as my laptop has gone wonky and I'm having trouble with quoting text, etc.
litebrite - thank you for the link, I have checked out a few of the games and I love some of the suggestions presented. It gave me a small boost of confidence as some of the suggested techniques were things I had already been doing to engage little one, although prior to our revelation I wondered why I had to go to such lengths to keep her attention and communicate. DD is receptive to my attempts to Engage, but as I said previously, in comparison to nt kids it takes a lot more effort, Never the less it is encouraging.
Auntie- ill be honest, I'm not sure if it is just one physician or a team. The pedi said a specific drs name but I was emotional and we weren't given a card or any additional information as we were told they would contact us. I found the number to "help me grow" which is my states ei program and I will be calling tomorrow. Do I ask directly for a screening via them? She will be 2 in December so she should still have another year of services from the ei program if I understand correctly. You mentioned discouraging hand flapping, in your opinion would distraction be an appropriate method? She also mindlessly runs back and forth across the room. At times it's hard for me to tell what is nt toddler behavior and what isn't since she is my only. I used to think she talked to herself and her hands when she was in her pack and play because she was bored (at nap time) of course now I see that as a behavior because she does it all the time, not just when she's by herself. Sorry for the run on and thank you again, your help has been a breath of fresh air.
daves sweetie - I never hung out on the local boards, I am from the Dayton area. Please pass my sn along to anyone who is local and can give me their input.
thank you all again.
I am a lurker in the Cincinnati area. We are going through the autism center at Childrens. After the dr gave us a referral I wouls say it was 2 weeks that we got a packet from childrens. It had you rate your concerns everything from autism to suicide in your child. Then about 4 weeks later we got a call for an appointment. Once the appointment was made, call was in September first appointment was in October. First I met with the Psychologist assigned to the case in ours it is Robin Adams...really like her. This was an adult appointment only. Then we moved on to the Speech and language and ADOS...ADOS is the autism test in round about terms. Then today we my daughter and I will meet with Robin for another evaluation. All the evaluators will take the info to the Dr. Valentine and she will sit down with us in January and at that time have a formal diagnosis of:
1. Autism
2. Autism spectrum
3. Nothing wrong
If you need to talk please PM me
The first appointment I will not lie I did cry the whole way through it.
Not sure how old your child is but if under three contach Help me Grow now they will set you up with services.
You've already been given a lot of excellent advice in this thread. Just wanted to say I hope all goes well with the eval process, I hope that your state's Early Intervention can get things going for you quickly and that you get answer soon. KUP.
This is so very true and has been similar to my experience as well. Trying to talk about my son's issues and therapies has been tough as some people don't understand and act weird about it, and at the other extreme some (including people who should know better) say, "Oh, I'm sure he's fine," "That's probably just personality," "A lot of little kids do that," etc. as if I'm just a worrywart with Munchausen's or something.