Yes Bonnie is right. Early intervention is the key. Some states call it the birth to 3 program. You could call your local health department and ask if there is a early intervention screening program.
Tammy
Thanks for the support. Maria has been in early intervention since she came home from the hospital at 4 months because of her birth weight. Her therapists have all gone back and forth with me on the possibility of her being on the spectrum and now that she is going to be transitioning to the school system thought it might be good to get an assessment to see if she is on the spectrum. It is hard because some times she seems on track and making progress but she does things that are a little off.
I am looking into having her assessed at Children's Hospital in Boston, MA or at the Yale Center in CT. I am also looking in RI for anyone who may be able to do the assesment. I just sometimes feel like I should wait and see but I have been doing that for a while now and I guess I just want to get it over with. I just don't want to end up with a misdiagnosis because of her age and the fact that her delays could just be because of her prematurity.
Of course, she does do some things I don't think are typical for any age, but I don't really know as she is my first child. For example, she pulls her hair when she is stressed or trying to fall asleep. Also, she repeats the alphabet song all the time, recognized letters and loves letters and numbers (can count to 20) and recognizes numbers. Also, she sings ALL the time. She repeats things you say to her instead of responding with a yes and really doesn't use word combinations often. Also, she started day care at the end of April and still will only parallel play with the kids (although she is great at interacting with adults - which I don't know if it is because that is what she is used to or what).
I just hope I am doing the right thing in getting her diagnosed now. She is such a great kid. Everyone loves her. She is really easy to care for because she is pleasant and interacts well with older people so everyone always wants to babysit her and the teachers at school enjoy her immensly. I couldn't have asked for a better kid - I just hope that I can be a good guide for her in getting her to be better at socializing with other children and in changing some of her strange behavior.
Yolanda (Maria's Mom)
If you plan on taking her to a center that does these types of evaluations on a regular basis then i don't think you will have a problem with getting a diagnosis that isn't actually there. Either your child is in the spectrum or she's not. At a center they will be able to tell you exactly why or why not she is in the spectrum. See....your child will either make the criteria for the diagnosis or she won't. And your right...certain behaviors have nothing to do with her being premature. I think it's a good idea that you are getting her evaluated with all that you have mentioned here. Take care,
Karrie
Early Intervention is our best tool to help our kids! You are on the right track looking for help and answers! Good luck I hope your journey is easy! bonnieHi! I am new to this board and just wanted to introduce myself. My daughter Maria is 30 months old (26 months corrected) and I am worried she may be on the spectrum. I am in the process now of trying to find someone to evaluate her and am just worried that I am doing the wrong thing. Sometimes it just seems like she is just a little delayed and needs more time to catch up (she was very premature) and sometimes I think there might be something else goign on.
I've been reading this board for a week now and thought I would post as I know I am going to have a lot of questions as we get closer to having an evaluation done.
First of all, hi and welcome to the board!
Maria's Mom,
Hi!! Welcome to the board. I don't think you are doing the wrong thing by having your child evaluated. If anything it is a GREAT thing. The result either way is not going to hurt her because she is who she is. If something does come of the evaluation it will only help her and you to understand what is going on and you will be able to better help her with her needs. By the way...I have 3 kids..my youngest is a boy (3) and has Pdd-Nos. I am also pregnant with my 4th and due in August. Again....welcome!! keep us posted. Take care,
Karrie
I think that it's wonderful that you're thinking of getting her evaluated. I went through the same thought process as you, but decided to wait it out for a while to see if my daughter would grow out of it. I regret the few years wasted when she could have been getting help.Hi. Maria's_mom. where do you live? I may have some answers for you. but if you have a peditrician for your daughter, ask them if there is anyone they can refer you to so that the new doctor may diagnosis her. my email is heather_crockett@bellsouth.net if you want to email me back.
Hey Yolanda, Welcome to the board, I think you're doing the right thing, getting her evaluated, it's better to be safe than sorry. By reading where you are looking to have her evaluated , you seem somewhere in my neck of the woods. Have you considered the Infant, toddler and preschool clinic at UMASS? Childrens has a 12-18 month waiting list. what we did is made the appt at UMASS, it was ONLY 3 months LOL but we also got a referral to a nueropsych, we got the initial diagnosis of ASD from him in JAN and and the pdd-nos from UMASS in MAR. perhaps if you mad the appt with one and were able to get your name on the waiting list at one of your 3 choices, you'll have your foot in the door before the school year starts,its just a thought.....
Thank you for all the support and information. I had not even thought about UMASS so I will call them today to get their information. I was also looking at Hasbro Hospital in Providence but my EI worker has had mixed results from them. There is also a Dr. Barry Pizant in RI that is supposed to be excellent but he does not accept insurance so he is out of network for me and I would have to pay a big chunk of the eval...something I just can't afford right now.
I will look into some of the resources here and just sign up for an eval at as many viable places as possible - hopefully I won't have to wait 12 months!
-Yolanda
Hi Yolanda! Welcome! Maria is very lucky to have a mom wanting to do all the best things for her.
I agree,... having an evaluation to rule out one way or another isn't going to hurt.... I always say better safe than sorry,.... if you wait; you may end up kicking yourself later for it. Best to know now so you can start with all the help she may need.
Does Maria happen to have a developmental Pediatrician who could possibly evaluate her or make a referal for you?
I posted some developmental milestone links in the Concerned Mum of 12 month old thread - don't know if they may interest you as well ,...........
Also if you are looking for resources in your area try www.unlockingautism.org they have a Parent 2 Parent Network that can connect you with a parent in your area to help you find services you are looking for. And of course you have the support of the board!
Hi Yolanda,
Just wanted you to know that I'm in a similar spot, waiting to have ds, 32 months, evaluated and find myself constantly wondering if it is the right thing to do. I completely understand your feelings. You want to make sure you catch any potential development delays in time to get help, but the thought of dragging him from doctor to doctor and us through the emotional ups and downs, and then possibly having a label attached to him, is all very daunting. My biggest concern is that since these are diagnoses that have to come through mostly observation of behavior, (its not like they can just give him a blood test and say "yep, positive for PDD") that he'll be misdiagnosed and then stuck with a label through life. BUT, bottom line is that we just have to do it. I know that what I am most worried about if I get right down to it, is finding out that he's "not normal/typical", and wondering what that will mean for his future. I'm scared, but at the same time, I love him so much and want the best for him, and if that means he needs some help then I'm going to get it for him, scared or not. Best scenario, I'll find out that he's a bit language delayed and get some advice for how to work on it. Worst case, is I find out that he has a PDD - certainly not the end of the world - and start getting therapy going. Watching all of the focus on Africa in the news lately has really made me think about what those mothers go through just to keep their children alive and fed in many cases, and my beautiful son has a roof over his head, will never be hungry, has a whole family who love him to pieces no matter what, and easy access to lots of therapy. No matter what...he will be just fine. So, no worries. Get the evaluation done, if only to give you peace of mind so you no longer have to wonder about it. Good luck to you!
Rachel
Hi welcome to the board I am a newbie too, with lots of questions and my son was diagnosed 5 yrs. ago. He was very delayed and they did not diagnose him till he was 4. So if they are doing it now that is great. I have always heard that early intervention is the best.. But on the other hand My oldest child Megan was a premie also by 3 mos. She started off rather slow paced in some areas too. But the pediatrician said give it a while because even though they are whatever age because of when we had them developing wise they are the age of what my term should be. So I waited and even thought like I said she was delayed at first . Now she is 15 and straight A's Honor society. So it can go either way. But definitely having whatever the situation is looked into now is the best . Good luck to you and either way it goes your child will be the greatest gift. I literally have 2 sides of the chart and I would not trade either one for the world.Amber