Need advice about my 3-year-old son

[Lecka]

Hi, I need advice about my 3-year-old son. He is a twin, and he was born at 37 weeks and weighed 6 pounds. So -- he is supposed to be fine on this. He has always been slow though, and my daughter had more favorable everything while I was pregnant. But the doctor always thought he was fine too -- so no idea if that has any bearing.

 

He is not talking well. He talks very high-pitched and he often repeats things. He also says random things sometimes. Right now he is often saying "I knocked down a building. No, Mommy, I knocked down a building." All the time.

 

He is only okay with other kids, not great. He plays okay with my other two kids (twin sister and 7-year-old son).

 

The biggest issue I think is that he doesn't always respond to people when they talk to him. He has a way of ignoring people like they aren't there.

 

So, a couple of people have mentioned to me they think he has autism. Namely, my mom, my aunt, and a nursery worker at my gym. She says -- basically -- he does fine overall but he does not like to share and he does not get he should be sharing.

 

I think he does better at home though and some things my aunt and mom see, I chalk up to him being in a strange place.

 

He was in early intevention from about age 18 months to 2 1/2, for speech. He had only the word "mama" at 18 months. Well -- at the first screening they thought he did not hear me, but thought he was very responsive to me and very responsive in general. They were asking if he had had his hearing checked.

 

It turned out he had very bad fluids in his ears, I think dating from some allergies when he was about a year old.... he got tubes right when he turned 2 years old. Then the SLP who came to our house thought he was making good progress after the tubes, and he exited speech.

 

He has just finished a 6-week summer pre-school, 5 hours/week. He did just okay. I think he participated a little, and followed directions a little, but didn't do great. They are very nice ladies there, and took him even though he is not potty trained at age 3 1/2. He is nowhere near potty training, either. I think he has no awareness -- I see him running around in the backyard and he does not stop to pee, the pee just comes out. I don't see him squat before he starts pooping, he starts pooping and then squats. If that makes sense.

 

So anyway -- my husband is in the Army, and I am taking my son to the pediatrician on post next week. I need to know what to tell her, I need to know what referrals I should want, I need to know if he needs testing, etc, and I have no idea.

 

I have thought, for a while, I would try to get him into the speech clinic my older son went to last year. They are very good and I believe they would give preference to a sibling.

 

But I don't know if that is the right direction?

 

Also my cousin has Aspergers. We were raised together and some behavior is maybe normal in my family that should be a concern to me, I don't know. I was raised to be very accepting of my cousin. So I worry I have a poor perspective.

 

I do know my son is good at things my cousin is not good at -- he is very willing to try to get a snack he wants from the cabinet, and that is the kind of thing my cousin struggled with. But my cousin has always spoken well and learned to read well when he was young. I have no idea if this means anything.

 

Any advice would be appreciated! I feel like I need some kind of evaluation for him and want to have a productive visit. I don't know where to start.

[Barb_]

I see some red flags in your post. I took my son to a neuropsych, but the intake coordinator at BCBS told me that either a neuropsych or a developmental pediatrician would be qualified to make a diagnosis. Do you need a referral?

Edited July 18, 2012 by Barb F. PA in AZ

[Lecka]

I have been to this pediatrician for a couple of years now, and she will not come up with any referrals if you give her information.

 

But, if you say to her, I need x referral, she will fill out the referral form.

 

So, I do think I can say "He should have a referral to the developmental pediatrician" over and over with different phrasings, and she will give me the referral.

 

If I just tell her my concerns, I think she will just type some stuff on the computer and then just ask the next question on the computer screen.

 

She is good for regular illnesses I think and she is nice, and she gave me an ENT referral before and put through the paperwork for my older son's speech therapy.

 

Yeah, this appointment is about getting their pre-school health forms filled out, and getting a referral for my son. I am hoping that once I get past this referral things will fall into place as far as knowing what to ask for at the next appointment.

 

I do think the Army doctors are willing to just let you come in the office and not get anything done, and don't know they should be listening to what you say and figuring out what referral you need. I hear it from other people, too.

 

I am wondering if something sticks out as the main thing I should say is my concern? Is it the speech, the repetition, the potty-training, the "not doing good" playing (which I would make sound worse to her than I do here) -- that should be my main concern?

 

And thanks for the advice to request a referral to a developmental pediatrician:) I think that is the main thing :) I have been wondering if I should ask for an OT evaluation or what.

Edited July 18, 2012 by Lecka

[Dobela]

I would also be even more specific. If he is not speaking, and has issues in the past with hearing, ask for a new speech eval. If you think there are other issues, ask if she would refer him for an OT eval and a PT eval just to cover all the bases and to rule out any issues you may be missing. With his age there may be a developmental preK program that can do this for you with in a short time. The developmental pediatrician will want to do those as well, but this way you can get the ball rolling, be proactive. Especially since you don't know what kind of waiting list there is for a good developmental pediatrician in your area. I know that for some of my dd's referrals to medical specialists, it has taken a year or more to receive an appointment after the referral was initially sent.

 

As far as what to make your concern, well, make a long list before you go. Make a copy for you to read and a copy to hand to the doctor. I would say something to the effect of "I know that one or two of these things may not be a concern but all of them together has me concerned, especially since we have family members with developmental delays and issues. I have had concerns expressed by preschool teachers, family members, and others. "

[Lecka]

Thanks, Dobela. I think I do need to go in with a list.

 

So I should get on the list for the other evals, in case the referral to the pediatrician takes a long time? That is good to know/bring up. It is possibly not there system.... but in good news, if it turns out I go to make that appt and it takes forever, I can get into the regular ped within two weeks and ask for the referrals again -- so that is not a lost cause if it doesn't happen the first day. I am willing at this point to keep on making appts with her.

 

The EI thing is separate and I am a little confused about how to integrate the two. I think he needs to get in the special pre-school, but I think it might be a whole year from now --- with his birthday, he has a whole year until Pre-K4. But I am going to see if he can get into it this year!

 

They would not take him for it a year ago (a full year now) but in the past 6 months he has just seemed further behind to me. At first I thought he was making good progress after the tubes.

 

I plan to see them at the very beginning of the school year, but I don't think they do much of anything over the summer.

 

I needed to have an IEP for speech, for my older son, before I could get a referral for speech services for him -- but with really different issues. So I have thought for a little while, I needed to go back to the school district before I can get a referral (for that referral -- I had to take his IEP to a woman in the Tricare benefits office... but after that everything was paid, the language battery and the therapy).

 

But now I have heard I do need to get the pediatrician referrals.

 

It is so confusing!!! But I have a good feeling about the appt next week ending with a referral/s and starting to find some stuff out.

 

Can I also say --1) we had a SLP from EI coming to our house over a period of about 10 months, and I specifically asked her one of the first times if she thought he could have autism. She said no. She said from the phone screening before I showed up at EI, they thought he could have autism, but when they saw him, they didn't think so, b/c he was so responsive and eager to do stuff and interact. Well -- he still is with me and a lot of the time, but he has started not to be at times he should be. 2) Over a year ago now we went to an exit meeting with the director of the special pre-school, and she thought my son was fine, too. So I am going to be pretty angry if it turns out they don't know what they are talking about.

 

But at the same time I think all of this could be speech-related to some degree.

 

But I don't know what to think right now.

 

I have been thinking of speech, b/c my older son, and it runs in my husband's family. But with my close cousin with Aspergers, that is on my side, too.

 

edit: I am in a fairly small town, and the EI screenings are held jointly with the pre-school screenings for the school district. The difference is people come to your home until age 3, then you take your child somewhere. Many of the people work both ways, and keep some hours where they are in their office, and some hours visiting homes.

Edited July 18, 2012 by Lecka

[wonderchica]

They would not take him for it a year ago (a full year now) but in the past 6 months he has just seemed further behind to me.

 

Can I also say --1) we had a SLP from EI coming to our house over a period of about 10 months, and I specifically asked her one of the first times if she thought he could have autism. She said no. She said from the phone screening before I showed up at EI, they thought he could have autism, but when they saw him, they didn't think so, b/c he was so responsive and eager to do stuff and interact. Well -- he still is with me and a lot of the time, but he has started not to be at times he should be. 2) Over a year ago now we went to an exit meeting with the director of the special pre-school, and she thought my son was fine, too. So I am going to be pretty angry if it turns out they don't know what they are talking about.

 

 

I would be careful with this. It sounds like your son has changed in the last year since he exited EI. The people you were working with then thought he was fine, and he may have been... THEN. It sounds like your son has kind of "stalled" since then. No need to get angry with your previous service providers, they couldn't have predicted his development would slow down. :grouphug:

 

I think evals are definitely in order. Developmental ped and speech for sure. With Tricare, in my experience the parent requests the evaluation referral from the ped. Then if therapy is needed, the parent has to request authorization for the therapy. IME the requests can't come from the provider.

[Dobela]

Every area handles the developmental preKs differently. I worked at one that would accept kids at any time during the year as long as they had an open slot. As an evaluator I did the evals constantly for possible new referrals. I have heard that some do only accept once a year though. I would try to find some local families that can tell you hwat happens where you are. Would base support be able to give you more information? When I worked near the AF base, we regularly provided information to family services because they asked for it. Maybe that can be a good resource for you.

 

And, depending on how large the area is near you, there may be multiple preK providers available. Where we live now has a developmental preK, but because it is always at capacity our private therapy provider now sends PTs, OTs, and SLPs into local day cares and preschools as well. I chose to take my dd directly to them instead though.

 

Children's needs change dramatically when they are small. Your child may have been discharged because he didn't meet the qualifying criteria for his age. It happens. The evals are all age based. He might not qualify at 2, but with little change he could suddenly be classified as severe at age 3 because he would be expected to know how to do much more. My dd didn't qualify for any therapy until she was nearly 3 despite definate issues. Also, different insurances and programs sometimes have different qualifying criteria. You may be told that he could benefit from therapy but insurance won't pay because deficits are not enough. Then you would have the option to pay out of pocket.

 

I don't know how Tricare works, but for therapy, Medicaid will first only approve the eval with doctor referral. After the eval is completed, if the therapist recommends therapy, Medicaid will pay with doctor orders. The therapist can't begin any therapy until the orders are sent to and then received from the doctor.

[Lecka]

What I am really angry at -- is not the EI people. What I am angry at is right now I am being treated by my mom and aunt like I have messed up and he is missing help in a critical period. But I did take him, and he was very, very close to meeting age standards when he exited. And, he has made progress since then. But my mom and my aunt are just giving me constant guilt trips.

 

I agree -- I do think he has, if not stalled, made too slow of progress to be keeping up with where he should be.

 

But can I explain to my mom and aunt that the EI people can't predict the future, and saw a little boy who was making steady and consistent progress ever since he got the tubes?

 

So far no luck -- I am supposed to magically be having him in some magical early therapy (that was not available for my cousin).

 

But really it is going to be hard for me to keep my maturity about that b/c my mom and aunt are just on my case. Like -- I have got the pediatrician appt made and am planning to start the referral process. What can I do in the mean time? Do I need lectures at present about the magic of magical early intervention?

 

And I am telling them -- I did what I was supposed to do, I took him, he got the tubes, I took him to the exit thing and they thought he was doing good. They don't want to hear -- maybe it is just in the past year he has fallen behind more, and maybe I am not a bad person to take him back when he was just a little behind, but making progress. Definitely now he is behind, but they are mad about it, and I don't really think it is something to be mad about. And really it will do *no good* if I try to blame this thing that has happened on the EI people, when talking to them. And, I liked the woman who came to my house and the director when I met her.

 

Honestly I am more mad b/c the main time my aunt saw my son, and got so het up, was when we were at my cousin's for a birthday party..... so he was at a strange place, being fed party food, and it was in the evening getting close to bed time. Like that is really going to be an accurate picture of how he acts.

 

But overall I don't think I have perspective, and he is my son, and I am not good at cataloguing his behavior into normal and not normal. I would think they were over-reacting if not for the woman at my gym.

 

But thanks for pointing that out. It is just like -- I got excited when he exited even knowing/expecting he would be back for articulation in a year. But now it is seeming like more than articulation. And -- I am getting blamed for it by my aunt and mom, like I could have prevented it by already having him in services (?????). But maybe I can tell them it just had to happen, you have follow behind before you get services, that is just how it is. They were not saying he needed to be in services one year ago themselves!

 

There is just one pre-K, but I could take him to therapist appts also in the year that I am not sure he would get in. I think they take kids once a year, and then there is a waiting list if they can exit kids.

 

And incidentally my mom was upset with my all last summer for doing a phonemic awareness program with my son when he was doing very very poor with reading. No, she would say. Children in our family are good readers and don't need things like that. All of you girls just learned to read. Don't force him to do this stuff. You are not letting him be a child. Etc etc etc and my son truly was struggling, unhappy to be struggling, and needed some help.

 

I am just really close to my mom so it is hard for me.

Edited July 18, 2012 by Lecka

[Barb_]

And incidentally my mom was upset with my all last summer for doing a phonemic awareness program with my son when he was doing very very poor with reading. No, she would say. Children in our family are good readers and don't need things like that. All of you girls just learned to read. Don't force him to do this stuff. You are not letting him be a child. Etc etc etc and my son truly was struggling, unhappy to be struggling, and needed some help.

 

I am just really close to my mom so it is hard for me.

 

:grouphug: I'm sorry. Sometimes moms have a hard time developing appropriate boundaries where they grandchildren are concerned.

[Dobela]

:grouphug::grouphug::grouphug: I know your pain. Despite learning that my son had vision issues that contributed to learning issues and delays, my parents still think I didn't try hard enough and must not be doing something right or he would be completely caught up by now. It is like hitting a brick wall in discussions so I no longer share any information. They know even less about my dd's issues.

[PeterPan]

Well like you're finding, people bring their own baggage when they interpret situations. Sounds like you should avoid discussing this stuff at all with your family for a while, as it doesn't seem to be helping you.

 

On the in and out of therapy thing, I think what you're seeing there is partly a natural cycle in SN and partly a reality of money. The natural cycle is that you do lots of therapy, get them to a point where they actually meet age standards, so you back off, and then as they continue to grow they need MORE therapy to keep them going forward appropriately. They have no ability to progress completely on their own. My ds hit age appropriate on his verbal motor control at Christmas after about 1.5 years of therapy. We backed off because the roads around here are horrible in the winter (Jan-March), and I was driving 2.5 hours each way in it. (SLP suggested it, I thankfully agreed. We had plans in place for continuing stuff at home.) After several months off, he had progressed some, but it was clear he was going to need more therapy. Imagine the motivation of a publicly funded place that has budgets and shortfalls and lots of kids to service. They test you at some point, he's age appropriate, out the door he goes. Nevermind that he's not going to STAY age-appropriate, because that means continuing to acquire skills that he needed therapy to acquire.

 

So that gets to my 2nd point, and here I'm a little crass. If some family memory is so all-fired concerned about getting him therapy and thinks you're not doing enough, money talks. With money you can get just about anything you want, at least here in the States. You have to be willing to drive, but it's there. But that's private and you pay through the nose till you bleed and die and wear holes in your shoes and do without haircuts and new clothes. So I'd more than willing to accept any criticism from family members if they follow it up with the $$ to get what I know would be nice, thank you.

 

If you get a referral to the developmental ped, then are you DONE with this woman (your current doctor)? She sounds about as helpful as a Coke dispenser.

 

I hope whoever you get referred to turns out to be awesome and helpful. I think you're fully on-track to be asking for these services and you should have all confidence in doing it. You are his best advocate, and you're with him all the time seeing it. You know what stuff looks like and the warning signs.

[Barb_]

I'd skip the dr and work thru the school system first. At 3 the school will eval, not EI.

 

 

Write a letter asking for a full eval and giving permission to evaluate. It should go to your local school principal.

 

That all depends on where you live. This isn't the case for many states. My private insurance handles it here.

[Dobela]

I'd skip the dr and work thru the school system first. At 3 the school will eval, not EI.

 

 

Write a letter asking for a full eval and giving permission to evaluate. It should go to your local school principal.

This is not true for every state either. Here developmental preKs work separately from the public schools. Public schools fund them after age 3, and the paperwork is determined by the public schools, but that is all. If you call the school asking for help, they will have you call a private clinic or the developmental preschools.

[Lecka]

I officially told one of my friends here that I am pursuing this stuff, and she does know a little about it. I think now that I have told her -- this is the beginning of networking I need to do.

 

She also thought I needed to do the school system thing, but I am pretty sure I go through the doctor for insurance to pay for the speech clinic my son went to.

 

My current doctor is good for deployment issues and basic illnesses. But no, I don't think she is very good for anything where you look to her for guidance on overall child things. I have only had a civilian pediatrician once, in another town, and he seemed really knowledgable about things like that. But then you lose deployment issues. For this woman -- if I said, I have this concern, do you think it is b/c the deployment, she would be on it, and would be excellent with those resources. We ended up just doing one session (as it was really helpful!) but my oldest son has been to a counselor for deployment issues in the past, so I don't want to give that up. (She went through a coloring book with him and spoke to me about how to answer his questions and speak with him.)

 

My Mom ended up getting on board with my son's reading. She finally realized that his problems were with skills she thought were K level -- she was listening to her friend tell her that everything is pushed down and kids are working above their level. Then she would do this thing of "just tell him mmmmmmmmm mmmmmmmommmmmmy and he will learn." Well guess what -- the whole problem was that he was not picking that up. I did "mmmm mmmmooooommmmyyyy." It was not a lack of doing that.

 

I think she will come around at some point, at least. But in the meantime -- I think it would be better for me to actively speak about it less with her.

 

The entering and exiting does make sense. I had really thought -- exiting means exiting! But they were even telling me -- bring him back to be re-evaluated if he needs it later. I did not want to hear it, I guess. Well -- it is later, now.

 

I can see it with my older son, though. He has got the early intervention for phonemic awareness. But do I think he will pick up multisyllable words, word roots, adding prefixes and suffixes, without more special instruction? I am doubting it. He is really confused, right now, by a vowel making a long sound when the e is dropped, when adding an ing ending. I have been waiting a little, I guess, to let him be exposed to this, but really, I think I should be doing word lists and letter tiles for him, if he is ever going to pick it up, truly, and I can see that. But part of me is thinking, hey, he had the early intervention, so now he is supposed to just keep up, right?

[Dobela]

My current doctor is good for deployment issues and basic illnesses. But no, I don't think she is very good for anything where you look to her for guidance on overall child things

My husand was active military when we married. While we didn't have kids yet, I found that statement to be true for my own medical care. The doctors on base were excellent for the active duty personnel, basic care, and things related to military, but not so much anything else. And honestly, they were hired to be military medical specialists, not general care physicians. When we adopted our son, we were actually encouraged to ask for a PCP off base. I learned to use civilian doctors whenever possible, or whenever I needed more specialized care. The civilian doctors are also familiar with military issues if they work in a military community, or at least most of the ones I used were.

 

This is my personal opinion so take it as such. The public schools here do offer services for free. But due to the large numbers of kids serviced, they rarely offer as many hours of intervention as a private provider, and sometimes it is not private therapy. When insurance pays, often you can receive more time and it is always private, individual therapy.

[ravinlunachick]

OP, this video glossary was extremely helpful to me when we were starting to hear the A-word bandied about for my ds. So much that I had seen as his own quirks were actually red flags for autism. You have to register to view the videos, iirc, but it's worth it. :)

 

 

http://www.autismspeaks.org/what-autism/video-glossary

 

Good luck on your journey. Be strong, and don't back down if they don't want to give you a referral. I had to argue for 30 minutes to get my son's first referral for speech at 18 months, when he'd never babbled or said a single word!

[Lecka]

Thanks!

[Lecka]

Actually these videos are great.

 

So far, on one hand, he often, often doesn't look when you point at things. It is so frustrating. We try to turn his head sometimes and he does not get it.

 

But he did do a lot of the other things (I looked back at some of our home movies) and that makes me feel a lot better about his evaluation back when he was 18 months, and see what they were meaning when they were saying he was very responsive and attentive.

 

I am just a little way through, and expecting to see a lot of things under communication. I am just jotting things down to mention to the doctor.

[Lecka]

So -- I very easily got a referral for a developmental pediatrician. I have got the phone number etc, it is a 2-hour drive away. So far I am getting an "out of office" message but I have left a message.

 

I got a speech referral from the pediatrician also. Talked to them -- I need to go through the school system first, then they will do it. That is fine.

[PeterPan]

Sounds like a good day on the evaluation front!