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Old 07-03-2009, 07:01 PM   #1
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Don't really know the purpose of this thread

But I am scared.
My 18 month old has developmental delays in a couple different areas, and althougt he has no diagnosis at this point, one of the obvious possibilities is PDD/ASD.

I have been a wreck for a while now, and I don't know how to do it.

I am having a hard time getting over the discomfort and pain I feel when I have to obviously confront the situation when I see him alongside normal kids. It's just so hard sometimes.

I can't help but get lost in a lot of thoughts about whether he will ever have a friend, feel love, say mama, and if he will be a happy person or whether his whole life will be filled with the pain of knowing he's different.

The self-blame is getting to be so hard to handle for me.

Can anyone help and tell me how you made it through these tough times.

Some people keep saying that it's POSSIBLE he will catch up and never need extra help again, but the pessimist in me feels like they're BSing me. Does that really exist, or is that a one in a million kind of thing?

thanks for listening. Like I said, I don't really know the point of this post. All I DO know is that when my husband is out working, my mind goes too fast and my worries come out more. That's why I am looking to hear from people who have been in my shoes.

 
Old 07-03-2009, 10:14 PM   #2
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Re: Don't really know the purpose of this thread

hi and welcome - we all know the confusion and discomfort of realizing in the early stages that something is not quite right. it's a very difficult time. but i am here to tell you that in time it will settle down and get easier and easier and more and more accepted. what helps along the pathway is mostly getting your son into the right early interventions for him, whether it be speech therapy, occupational therapy, ABA therapy (applied behavioral analysis). I think personally that a really great speech therapist is the first and foremost thing to look into; this will be a great source of knowledge for you and also moving forward with help for your son. Get referrals from either the diagnosing professionals, or contact the local autism society in your area and see who people reccommend.

It is a good idea anyway to contact the local autism society to network and get info about general services, social groups, camps, schools, what the schools have to offer you, and good therapies and therapists. Your local school district is another place to contact for early intervention services. I believe now they start at very young to qualifity for services once the diagnosis is made. The director of special ed will be able to fill you in on details.

Nowadays many/most insurance co.'s will pay for the speech therapy and O.T. My son is 21 and we had to struggle to get payment, sometimes did, sometimes didn't. Now it's easier guidelines.

Once you get on the road to getting services and therapies and contact your local autism support group and get involved, you will get more used to the concept of OK this is what it is, now this is what we will do.

Please feel free to ask any questions.

 
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Old 07-04-2009, 06:06 AM   #3
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Re: Don't really know the purpose of this thread

Hi there and welcome. You have just found THE place where you'll get support, make friends, and get terrific advice and information.

It stinks that we don't get a book of instructions. First of all yes it can just be delays. In the meantime just to cover all the bases you should if you haven't already have a full evaluation done. If more evals are needed I would suggest a nuerologist and developmental pediatrician.

Right now it all seems overwhelming but it'll be ok. Why don't you explain a little more of your concerns perhaps soeone around here can give some suggestions that helped them. My advice deep breaths.

 
Old 07-04-2009, 07:39 AM   #4
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Re: Don't really know the purpose of this thread

Honestly, nearly 40 people reading this message and only two bothering to take the time to reach out to me doesn't make it feel like it's such a place for support, it makes me feel like a spectacle instead. : (

I don't know how to explain my concerns. I guess the closest and simplest way to try and explain is that I don't really feel like anyone out there gives me much hope about anything or any expectations whatsoever. They just told me there seems to be a problem and set me out to sea without a sail.

I started Ben with ST and OT from a private clinc (and private pay), but they were doing combined sessions, and I feel like it was a total mishmash and does not seem very organized, quite frankly, so I told them I don't want the mixed session anymore. He will have only ST for a little while and then bring back the OT in a separate session perhaps.

They also don't keep me abreast of what they are specifically hoping to achieve (or in any approximate time frame). I just can't help but be pessimistic about it, I guess. I mean how can you teach a kid who has no interest in sharing things with his mom to want to do so? It just seems like such a basic need that you cannot TEACH it, maybe I am going to end up with a kid that shares something with me not because he wants to and because he loves me but because he has been re-programmed to do that. Also, if he does not inherently want to imitate us doing things, how can you ever teach him that? It just seems like teaching someone to breathe for Pete's sake.

How can one hour a week of speech POSSIBLY even scratch the surface?

Some days like yesterday and today, when I am with him all alone for the whole day, I just don't know how I am going to get from start to finish that day.

We have a neuro appt, but it's not until the second week of Sept due to scheduling backups. I also feel like there's almost an AUTOMATIC diagnosis of something coming out of that because that's what they do. I don't think it even occurs to them that anyone walking through the door wouldn't automatically go into one pigeon hole or another.

Ben is kind of a different kid when we are out at the playground. He is SO interested in other kids there and stuff. He seems to most be disinterested here at home. Maybe boredom contributes to that... I don't know.

We are also facing issues at daycare. He goes twice a week, and he has been having some on-and-off biting issues there. The biting issues are one thing, but they have gotten me to thinking that maybe it's not the place for him.

I just don't know what to do. I am stuck here with nothing happening in a positive direction, and it's too easy to kind of spiral into despair about the whole thing...

 
Old 07-04-2009, 12:06 PM   #5
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Re: Don't really know the purpose of this thread

As for my fellow posters I can only imagine that being the holiday they are out and about.
As for no answers the Dr.'s like to remain cautious in a diagnosis. I believe my son has Aspergers, however, he hasn't been officially diagnosed and he's 7. My son didn't walk until 19 months and didn't speak until he was 2. now he has a 4th grade reading level and is going in to the 2nd grade. He had early intervention starting at 14 mths. He was 33% delayed in all areas. He received o/t, p/t, s/t & special instructions. Currently in school he gets p/t and o/t. I have him see a private psychotherapist to helpwith his anxiety.

Aside from the biting in school which most kids go through a phase and he seems like he's lookng to socialize. What are his delays? Does he shy away from strangers, does he hand flap, is he sensitive to loud noise? These were some of my son's issues.

Just remember one step at a time. ok?

 
Old 07-04-2009, 04:42 PM   #6
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Re: Don't really know the purpose of this thread

hi - if your son likes the playground and being around other kids, that's a good sign. i think he should be in some kind of social interaction program right now and not daycare because they can tend to be only a holding tank and may not be able to cater to the needs of specific kids. and if he's biting, he may be misunderstood there and i agree with you that it's probably not a good fit. your area must have some kind of early intervention program - call everywhere you can to find out what is available, ask the S.T. and I would increase the time to twice a week. my son always went twice a week when he was little; i don't think once is enough.

ask your ped. about early intervention programs, call your local office of developmental disabilities and ask for your son to be evaluated for early intervention, ask any professionals he works with about what other intervention or social programs may be in your city. you probably have a lot more than you're aware of right now but you have to do the searching out for yourself at this age. even music therapy is a very nice social experience with lots of interaction.

the more your son is signed up to do that involves interaction and involvement, the better he and you will be. it is very hard to be around the house with nothing particular to do so plan for outings each day and begin to add more and more therapies and interventions to his day. he will benefit but the daycare sounds like it's not going to work if they are making criticisms of him. it probably isn't a fit as they are not equipped to do the kind of interventions that would be in his best interest.

so, my advice to you is to think ahead of what you can do to fill his day with productive therapies and interventions. he is very young and believe me, there will be many many changes and much growth in the years ahead.

 
Old 07-04-2009, 04:44 PM   #7
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Re: Don't really know the purpose of this thread

hi again - i just wrote a lengthy post just below, but wanted to add that another website that you would probably like is * website link removed by hb-mod, moderator *

Last edited by hb-mod; 07-05-2009 at 04:17 AM. Reason: Please don't post links and/or information regarding commercial websites as per Posting Policy. Thanks.

 
Old 07-04-2009, 06:12 PM   #8
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Re: Don't really know the purpose of this thread

I know that he needs more activities planne,d but we both work, and we don't hve the choice NOT to.

We can't just sign up for every gymboree, etc., that comes along

 
Old 07-05-2009, 01:22 AM   #9
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Re: Don't really know the purpose of this thread

Many toddlers at Ben's age, especially who are speech delayed will bite. This is not uncommon. Very good , trained, early Childhood EducationHood Teachers know this. I was A Preschool teacher, for over 20 years, and also worked as a infant toddler director .
My Son, showed early signs of developemental delays . He was not talking, and was extremely active, agressive towards other children by 2 yrs old. He recieved his diagnoses of ASD by 3 1/2 . By then he was spinning around in circles, jumping up and down, hand flapping, finger flapping, making strange noises, and only would repeat the last few words a person would say to him. He was very small for his age too, and as a baby was constantly sick.
Try not to be jumping to conclusions about your toddler too soon right now. He is still quite young. ANd unless he is showing severe regression in his development, then he will be ok. Little boys are known to be slower sometimes with speech development. That is how it is . Is is your first born? If so, then this happens more so. It is actually good that he is in preschool, because he is getting a chance to be aroung other children who are talking and exposed to language more. This is a good thing.
Anther very good thing to do, is to read to him . This will enhance his language ability.
He is biting out of frustration, because of his lack of language skills. This is why toddlers bite. Teachers are suppose to be able to "catch the act before it happens" so it can become a teaching opportunity for both children. However, teachers, do not have eyes in the back of their heads. But, their ought to be a less teacher ratio , in the classroom in the first place in a toddler classroom. And a teacher needs to be aware of the toddler who bites, and always watching more carefully !
It is not the child's fault. Goodness, I can go on and on about this ! it is going to be ok though! My son is now about to be 16yrs old, and he is high functioning! Verbal, and doing a lot better

 
Old 07-06-2009, 09:50 AM   #10
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Re: Don't really know the purpose of this thread

My son has high functioning Aspergers. He is now 18 and has graduated HS. I worked full time when he was a baby til age 4 and he was in a daycare center. He wasn't diagnosed until he was in 3rd grade, we knew he was different but didn't know why. Anyway, looking back, when he was in daycare I think he was overwhelmed by all the noise and activity. He would always want to wear his winter hat, I think to block the noise, I thought he just liked the hat. Also, the daycare people would say if he was playing with a toy and another kid took it from him he would just go get something else. They just thought he was passive, I now think he just didn't want to interact with the other kid so much. He never really "played" well with others. If your son is doing ok and interacting with others on the playground that is a really good thing, he shows an interest. Even if he is not interacting directly he can watch and "learn" from the other kid and "copy what they are doing.Maybe he is bored at home. I found that my son wasn't too imaginative playing by himself, always had to egg him on with "creative play". Get out the crayons and playdough and sit on the floor. Play dress up and act out roles. Get the stuffed animals out and pretend and show him how they can "talk" with each other. I always had to initiate this kind of play with him even though I never knew when he was younger that was a problem for him.

Just do the best you can. At least you know there is a problem and you can work with it. It took a while for us to find out my son was not just different, that there was a reason. Do sp/ot give you things to do at home between appointments. If not, ask them for suggestions.

 
Old 07-06-2009, 10:01 AM   #11
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Re: Don't really know the purpose of this thread

Some thing else...a friend had a child with speech delay. They learned some simple sign language. It really cut down on the frustration the child had with communication. You don't have to learn a great deal. Just simple things like hungry, tired, thirsty, I want---, Have to go potty. He was really delighted in being able to communicate better. Hopefully the speech therapy suggested this to you, it is really quite common to use this with children w/speech delay...ask them about it and do some research on-line I am sure there is alot of info. Some people think it may delay speech, but for my friend son I don't think it did.

 
Old 07-06-2009, 07:27 PM   #12
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Re: Don't really know the purpose of this thread

Ben's mom and Cathy - Just to jump in on your comment about the use of sign. this a somewhat controversial in the area of autism as some feel it can run the risk of becoming a tool that is easier to use than speech. in our case i felt this could happen so we didn't use sign (our S.T. was against it) and i'm glad we didn't as my son eventually became quite verbal. i don't know if it would have affected him to use sign or not but it worked out not to.

i do think your idea of some way to communicate is important. some of the S.T. are encouraging the use of a PECS (picture communication system) where felt boards are set up or whatever kind of picture board works for the parent where the child can learn to point to what he wants or point to a feeling: ie happy, said, sick, tired, made, etc. with pictures drawn or from magazines or books to illustrate.

and then pictures of types of food, drink, bed, toys, books, tv, etc. for the child to indicate more specifically what they want.

Last edited by Mira11; 07-06-2009 at 07:28 PM.

 
Old 07-09-2009, 08:11 PM   #13
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Re: Don't really know the purpose of this thread

i understand your fear and remember being in your shoes. my son started therapy at 17 months old (speech and play therapy). at 2 we enrolled him in an early intervention preschool and that is where i heard about ABA. we were very fortunate and received 25 hours per week of in home ABA. I believe this was the absolute best thing for him. you see, with typical kids the desire to share things does come naturally but for spectrum children it must be taught bit by bit. believe me i was not sold on the whole thing when all i saw day in and day out was a therapist telling my son to just model her behavior. ie. she would pick up a red lego piece and without speaking he was to do the same. eventually, guess what.............they were sharing lego pieces and building things TOGETHER. i understand the fear of not knowing if you will ever hear him talk but ealry intervention is key.

my son is now 8 and, although not what you would classify as typical, is getting along wonderfully. this is a child that barely spoke until age 4 and now can't wait to tell me things.

 
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