Resources for Children with Developmental Delays

[SteelPenguin]

Background: Our 18 month old is still not talking at all, not even mama or dada. He displays a number of warning signs for a developmental delay. We've already had his hearing checked and that came back fine, and now we're waiting to have him evaluated. The problem is we called around and the earliest appointment we could get to evaluate him is almost 5 months from now.

I know it's still early, and kids develop at different speeds, but we've had a feeling for quite a while that he was a little off. Different. He makes great eye contact at times and is very social, and loving. Physically and coordination wise he's at or ahead of the curve. Other times he gets so focused on what he's playing with whether it's the thomas trains, or his matchbox cars, or the little people barn that you cannot get his attention no matter what and doesn't seem to hear you at all.

We don't know if it's anything, or something, or what. We won't know till October at the earliest, unless we somehow get a bumped appointment.

Anyway, I'm not looking for a diagnosis or anything, we'll have to wait for that, but I'm looking for resources of things we can do with him in the meantime here at home that might help out. Just in case it is some sort of ASD or speech or developmental delay. Whether it's ideas, links to websites with resources, or particular books. I just don't want to keep on doing what we're doing if we can find something else to do that might help him out in the next few months.

Appreciate any links, ideas, or resources of things we can do with him while we wait the months for the appointment.

[Kittycat]

1. Have your pedi request a 0-3 or Early Intervention Evaluation with a therapist

Every state is required to offer the program, and the eval should not cost you anything. Depending on the state you live in, services range from completely free, to minimal out of pocket based on income - and you can use your insurance to supplement. If they recognize a speech delay, he'll get regular therapy in home or in-clinic, depending on how your state program operates. They will also provide you with training and resources in the home, if necessary.

You'll likely get your eval within 2 weeks of the referral. If you want to PM me with your state, I can help you find some local resources. We're in the Chicago area, and have been through it all with our 4.5yo. He was a micro-preemie, so we're pretty versed in the intermediate steps of the programs :)

[SteelPenguin]

2. We're in PA

the Evaluation is what we're waiting to get. We got the request from the Pediatrician and called a bunch of places around town, and the earliest we could get so far is end of September. Most places we've been leaving messages and not getting any response, and to get the appointment (which is at Childrens) my wife essentially had to call every hour until she got someone able to give her an appointment rather than just take down her information and promise to get back to her, which they kept not doing for days and days.

Maybe there's a glut of children who need evaluation and a lack of qualified people to do it, but it seems like we shouldn't have to wait 5 months to just get an evaluation. It seems like it might be a pretty critical time for us to be helping him.

[Maureen54]

3. early intervention

HI,
I work in Early Intervention in PA Please feel free to email me I will try to answer any question you may have. You should not have to wait for an evaluation. Requirements are that the evaluation must be completed within 45 days of referral


I added the link to OCDEL (office of child development) the state bureau that oversees EI in PA
Your county should house the local EI office, usually under the MHMR office

http://www.pde.state.pa.us/early_childhood/cwp/view.asp?A=179&Q=124393

[SteelPenguin]

5. I'm unable to send you a PM

Basically what happened is our Pediatrician had us go get his hearing checked a couple of months ago, and that came back fine. Then for his 18 month they gave us a piece of paper and told us to call the Child Development place at Children's Hospital which we called repeatedly again and again, until we finally were able to book this apointment in late September. We're currently looking around on our own for independent places in the area that might be able to give an evaluation. If you have any resources along those lines as well that' dbe helpfull.

Otherwise do you have any books or websites you can recommend for us to check out?

[Maureen54]

8. resources

I have lots of resources at work, but I'm at home sick today.

I added the OCDEL to my last post . That is the State bureau for EI and other services for children. They probably have a link for each county. I think you should start there. They will come out to your home to do an intake, then set you up with an evaluation for your child.The evaluation will take place in the home and services, if your child qualifies, will also take place in the home. All services free of charge.

What county do you like in?

[SteelPenguin]

9. Allegheny

I'll read the OCDEL pages you linked, thanks. I'll keep an eye out in this post for other information from you.

[Maureen54]

11. local EI information

http://www.afit.org/



This is the link for the the Allegheny county EI Coordination unit. It give you information on whom to call.

[SteelPenguin]

13. Funny

My wife and I were operating on separate tacks and she called them while I was posting here earlier I guess. Someone from there is supposedly going to call us back inside of 10 days to set up an in home evaluation.

Thanks for the link though! It validates we're on the right track.

[Maureen54]

14. Good luck

I'm glad to hear you're connected. I know I'm bias , but it's I think it's a wonderful program! I'm sure with people like you and your wife , who seem committed as parents, and help from EI your son will do fine!

[fight4my3sons]

4. Kitty cat gave you the advice I was going to give you

I took my twins in to Early Intervention when they were not speaking on what I thought was the right 'timeline'. I did social work at Head Start and am a Special Ed teacher before having kids, so am pretty familiar with what they are 'supposed' to be doing. They did not qualify for services at the time, but are speaking well now. I am so glad that I went as it put my fears to rest and they gave me some exercises to do with them (mouth things). They had "twin speak" a twin language that was interfering with their 'normal' language development plus the fact that their older brother was talking for them. Anyway, I did have to wait a while to get in for their evaluation. Some of it has to do with how many evaluations they have and how much funding and that kind of thing. Right now I know our state is kind of getting hit with budget cuts in that area.
I hope you get in soon as I know it is nerve wracking when it is your kid that you are worried about. :hug:

[SteelPenguin]

6. For a long time we suspected it was because of our daughter

She's 2 years older than him and literally doesn't stop talking for hours at a time. We can't shut her up. If we try and do anything with him one on one and she's in earshot she'll come over and try and dominate the play. She'll call out the words. She'll describe what he wants. Etc. We're trying more to just put her in front of the TV now in another room just to get some more 1 on 1 time with the boy.

they do love playing together though. He follows her around babbling incoherently all smiles and happy. They move like a school of fish sometimes running around very close to each other.

I don't know honestly if ANYTHING is wrong with him. He could be just developing on his own pace. If it's Autism it's not severe. It might be nothing. We won't know till we can get an actual evaluation. Till that point though do you have any references for the language development aspect? We've suspected one possiblity for the language might even be a physical thing since he doesn't seem to make the M sound at all or a number of other sounds.

[My Good Babushka]

7. Same Boat!

I did a double-take when I began reading your post. I had to make sure it wasn't my husband posting about us. Our little boy turns 18 months at the end of this month and doesn't say "mama" or "dada" either. He is also very absorbed in the things he does and ignores us. My husband lost his job and our insurance around the time we were going to take him for a hearing evaluation. However, I am not worried about his hearing. He loves for me to turn on music and he dances around. He knows what I'm saying when I say "let's have lunch" or "bathtime", and I've even said it behind his back, to check. Also, he doesn't ignore his older brother when he says the baby's name, he just ignores us, the parents. I think it's too soon to jump to conclusions about speech delays. If he was closer to two I would be worrying more, but I know he has that magic finger and his caveman grunts that get him just about everything he wants. Best of luck to you and your little one. Just remember, one day you'll probably be wishing he would just be quiet!

[SteelPenguin]

10. Yup very similar

We've done the same thing. He'll sometimes totally ignore us, but we can be in a different room and call out "Lunchtime, get in your chair" and he'll come running, etc. We'll say "we're going out, go get your coat on." and he'll go over to the coat stand or the front door. "bedtime, everyone upstairs." "time for your vitamin." etc. He understands all these things sans gestures, from the other room, etc.

Othertimes you can sit right next to him trying to get his attention and it's like your'e not even there he won't look at you at all.

Our boy also loves music. some songs better than others. God help me, he likes John Denver. He'll clap along to Country Boy.

[Celebration]

15. Does he say Bye Bye?

Bye Bye and book (buh) are about the only thing that my 16 month old grandson says consistently. DaDa refers to every male person, or so it seems to me. Apparently sometimes he says mama, but I haven't personally heard it.

One thing that is interesting is that I take videos of him with my digital camera, and it records his sounds too. He loves to watch them and interact with them. So, when in the video he is asked to point to his ear, and he does, he also does it while he watches the video. Then he claps when we all clap in the video. And, to ask to see the videos, he makes noises like he makes in one of the videos. It is a sort of meh meh meh but in his own special voice. That is my clue to put on "Babysitting 1" video.

You might try letting him watch videos of himself and see how he reacts. My husband says it confuses him, but no, I think it helps him learn. He definitely mimics the sounds that he makes. You can easily point things out in the videos--mama, dada, etc. Maybe it could snap him out of the inattentive times.

John Denver, huh? This one seems to like bluegrass music. The kiddie channels doesn't do much for him.

[SteelPenguin]

16. He waves bye bye but doesn't say it

he babbles with different tones but the only "word" he says is "uh oh" when he drops something. Otherwise it's just a combination of Ba ba ba da da da do do do ba ba ba coming from his mouth.

he's an odd kid. It's like sometimes he's in his own world and other times he's not. I'm curious to learn what the actual problem is at this point, even though i'm still worried about him.

There are times he'll walk over to me and hand me a toy he's playing with "ba ba ba bababa" making good eyecontact he'll smile and give me a hug, then walk away, stopping afte ra couple steps to turn and wave bye bye to me, before proceeding off to another part of the house.

Other times he's utterly uncommunicative and in his own world to the point where we considered he had a hearing problem.

I don't know. My wife thinks he has some sort of developmental delay but she doesn't think it's Autism. I have absolutely no clue. Hopefully we'll find out sooner rather than later.

[Celebration]

17. I hope you can get him diagnosed soon

I do think it's a good plan that you give him some attention away from his sister. He might need some of his positive behaviours reinforced more than most kids--to try to retrain him from going into his own world. Or maybe some speech therapy could be beneficial. That is hard to know without a professional evaluation. Obviously he is capable of being very social, so that's a great sign!

[Kittycat]

12. If you haven't - go ahead and get him in for the free eval with the therapists.

Again, it's a program that if your child qualifies for, will likely not cost you anything, especially if your spouse is unemployed. The Early intervention programs are federally mandated. A couple things you mentioned are triggers that the therapists look for during evaluations - if you basically repeat your post to them, they'll know exactly what to look for. The best results come when children are evaluated and treated as soon as possible.

We have a couple areas, separate of our son's physical issues that I wished the drs would have listened more closely to us about. Because at 4.5 we just found out some new things about our son that we could have been treating all along. Drs make mistakes, no one is perfect - but the evaluations only take an hour and can, as a previous poster mentioned, really put your mind at ease - or in our case, get you the help you need.