outsider with a question (long)

iVillage Member
Registered: 04-04-2003
outsider with a question (long)
10
Mon, 08-27-2007 - 7:09pm
What would you want done? A friend of mine has a daughter that is 2 years and 3 months. She doesn't speak (says maybe 6 words that you can't really understand). She rarely refers to my friend and her husband by name, and she still parallel plays. I mean there will be about 5-6 other kids who she sees often, and it's like they are not even there, and all the kids are playing together.
My friend thinks her pediatrician is the best thing in the world. I and 2 of my other friends are teachers and teach many kids with many different disorders, syndromes, etc. and we feel she needs intervention or at least screening. At her 2 year check up the doctor said to my friend about her daughter "I assume she has a pretty extensive vocabulary by now?" My friend told him that she only said about 2 words, and the doctor said nothing else about it. I should also tell you that when I watched this littel girl at 11 months old, I had to hold her the whole time because if you sat her down, she fell over and couldn't hold herself up. At 13 months we sat her with our kids to take a picture, she fell backwards, and didn't even know how to brace herself. She did not walk until 18 months, which would be in the normal range if she wasn't so delayed otherwise. She wasn't trying to feed herself at 21 months (my 14 month old was feeding herself and my friend was impressed because her daughter couldn't do that). We get together regularly, and there are 4-5 other kids around her age, and she doesn't interact with them at all. When we (adults) try to talk to her, we usually get a dead stare. Sometimes I can make her giggle. Sometimes. Usually it almost upsets her when we try to speak to her. Simple things confuse her and then she gets very upset. At her babysitter (my friend works) she doesn't play with the other kids either, and these are children she sees 5 days a week.
My friend asked if she should have her checked because of the speech, and we got her the name and number of the early intervention center in our county. She has a new baby and is having marital troubles, and we don't think she will ever make the phone call. Her doctor says nothing, so she thinks everything is fine. Yet when my 20 month old talks in mini sentences and repeats anything you ask her too, says "please" and "thank you" my friend says " 'Julie' can't say / do that!"
We don't know if she is on the spectrum, but we have students who are and we see similarities.
I'm sorry for writing a novel, but I felt you needed some background.
The question. Should we say something to her? I mean, I know the answer is yes, because the longer she waits, the more important time she loses. What I want to know is, would you have wanted friends to bring this to your attention if they were teachers and had seen this behavior? Apparently, her doctor says nothing, and she probably won't be back for a well-check in months.
How would you want your friends to approach you? I mean there could be nothing wrong, but the fact that speech, motor skills, and social skills are all SO delayed, we can't imagine she doesn't need some sort of intervention or at least the need to see a professional.
Thank you all SO much for reading through this. My friends and I are nauseous about this, but would feel wrong if we didn't say anything.
Thank you!
-Krista
iVillage Member
Registered: 10-03-2004
Mon, 08-27-2007 - 7:24pm

Hi Krista,

Yes, you are right, I think you should tell her ASAP to make the call, esp. with her asking you your opinion already, but even if she wasn't. I would always say to err on the cautious side when there is a young child with questionable symptioms. My own child was much less noticeable than what you describe at the same age, he had loads of language and seemed more engaged around other children, happy, etc. We were lucky in our pediatrician and a few other symptoms that worried us, but we didn't get him started in intervention until after he turned 3.

I would go immediately with your other friends and voice your concerns to her gently, but firmly. Ask her to make the call right away and get the ball rolling on an evaluation. Tell her the process can take time, and time is crucial. Using the speech as the reason works as a startup .. maybe don't mention the autism possibility strongly, but push for the testing of the child's speech as critical to help her catch up to other kids her age as soon as possible. That IS important with children who end up only having speech issues but who are not on the spectrum...

I would have wanted friends to say something sooner, but I know in our case there just wasn't a sooner... But I really really would have wanted friends to say something right away! Having a son who got so much help young, and who now at age 10 (with continued help) is doing great ... I can speak to how important the early help is personally.

Sara

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Registered: 10-18-2006
Mon, 08-27-2007 - 7:27pm
I have a feeling she knows something isn't right, but doesn't want to admit it. Denile is the first step in the grieving process. In as loving and caring a way as you can, I would explain to her that the longer she waits the less she can do. She may not even realize that there are services available to help her little one make up some of the gap in milestones. As a teacher you may have an easier time finding the information about the early intervention services in your area. I would gather some of that up and give it to her when you discuss the fact that you feel her little one would benefit from a developmental screen.
iVillage Member
Registered: 04-04-2003
Mon, 08-27-2007 - 9:10pm
Thank yo both so much for your quick and honest responses. I'm happy to hear that you would want a friend to say something. I will talk to my other friends (other concerned teachers) and we will get the ball rolling.
Thank you SO much, again.
-Krista
iVillage Member
Registered: 06-25-2003
Mon, 08-27-2007 - 10:41pm

Hello Kriata and welcome.


If your friend

-Paula

visit my blog at www.onesickmother.com
iVillage Member
Registered: 06-27-2007
Tue, 08-28-2007 - 1:41am
If a teacher had approached me when my son was two and said matter of fact like...I've noticed that your son has these characteristics...naming a few. I work with children who are simular to your son. You may want to have him evaluated. It wouldn't hurt. I would have been grateful. I had never even heard of Pdd-nos. (I had heard of autism) As he grew older he got more and more difficult. Wanda.
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Registered: 04-04-2003
Tue, 08-28-2007 - 9:58am
Thank you everyone for your input. I did give her the number yesterday for Early Intervention. She always compares her daughter's speech, or lack of, to my and my friend's 20 month olds who are saying a lot. She is at least aware of the speech delay. The parallel play however. She just gets annoyed and thinks her daughter is shy. I've seen shy kids. After being in the backyard for 3 hours with other kids that they see often, usually the shy kid will at least go on the swingset or run with the others. It's like she is the only one there.
My fear is that she will never call early intervention. Like I said, she adores her doctor and puts all of her trust in him. I really think that because the doctor never told her to have her daughter screened or anything, she thinks everything must be okay.
I too don't think I should bring up autism, but at the same time, I feel like that might be the only thing to get her to make the call. I'm thinking maybe I can tell her that she needs to also call because SOMETIMES a speech delay can be a sign of other issues.
I'm just so annoyed that her pediatrician hasn't noticed/said anything. At 15 month check ups, my doctor asks if they (my kids) are saying anything, how many body parts they know, etc. Before 12 months, they ask about sitting up, pulling up, etc. How does this doctor not ask these questions? A 1 year old who can't sit up by themselves should have been a concern, but my friend was probably holding her, so he never knew. Obviously never asked either. My daughters were talking in front of the doctor and my docotor still asked me about their speech!
Again, thank you all so much. Seriously, you've been such a great help. I'll let you know if she calls.
-Krista
iVillage Member
Registered: 03-27-2003
Tue, 08-28-2007 - 2:00pm

I am lurker on this board, and I wanted to chime in on this subject.

My daughter had a lot of issues when she was two years old. I had discussed my concerns with her pediatrician, and my concerns were dismissed. Then we started attending a parent participation preschool class, the differences between my daughter and her same age peers were very plain. The preschool teacher did have a quiet, kind, polite, tactful word with me that I might want to have my daughter evaluated. I took that suggestion seriously (I could see my daughter's struggles very plainly). I made an appointment with a peditrician. This was a different pediatrician from the one mentioned above, as our insurance had changed.

I discussed my concerns with the new pediatrician: she screams for hours a day, she can't follow directions, she does odd things like eating sand, and walking around on her toes. I discussed the preschool teacher's concerns, and how different my daughter was from her same age peers. The other children can calmly sit in circle and listen to a story, my daughter runs around in circles, screaming. During this long discussion, my daughter was going round and round in circles in the exam room, walking on her toes the whole time. When my daughter was asked a question, she would just repeat the question back. She couldn't answer a question.

The pediatrician told me to not worry, my daughter just can't sit still yet, don't put her in an activity where she has to sit at circle time, look for something more active for her. She should settle down by the time she is 5 years old. The conversation went on and on and on, as I was not quit believing the everything is fine conclusion, and I kept bringing up more stuff, but the pediatrician was firm that my daughter was doing fine.

Well, what else could I do? Of course I had to go by what the pediatrician said, she was the expert. I am telling you this story so you can be aware that what your friend is encountering with her pediatrician is much more common than it should be. I am afraid that sometimes pediatricians get in a rut of just dispensing antibiotics for ear infections and administering immunizations, and don't pay the attention they should to developmental issues.

I didn't know about Early Intervention services. I wish I had. I wish the preschool teacher had mentioned it to me when she was discussing her concerns about my daughter. I would have contacted them. It certainly would have made a difference for us. In my state, a great many services are funded through Early Intervention. After age 3, services are provided by the school district, and the schools are so low on funds the services are very minimal. Also, most health insurance plans won't cover speech therapy or occupational therapy after age 3. It is the school district's responsibility. The parents have to pay out of pocket for private services after age 3.

I do think you are wise to not mention the word autism to your friend. It is just too scary, too frightening a word. I would mention that Early Intervention services are free (or low cost, however it is handled it your state). And I would mention that there is a small window of time for these services. If it is put off for too long, the parents will have to pay out of pocket for similar services.

By the way, almost a year after the encounter with the pediatrician mentioned above, I took my daughter to have a speech evaluation with the school district. Her speech hadn't spontanneously improved on its own. After spending about 30 minutes with my daughter, the school district speech therapist said to me "Your daughter is displaying traits of autism". She told me my daughter needed a full evaluation, so she could get services from the district. The speech therapist filled out the paperwork to get the process going.

It does make a difference which professtionals you consult with. Some are just not familiar with the obvious signs of autism.

iVillage Member
Registered: 04-04-2003
Tue, 08-28-2007 - 2:52pm
Wow. It is very scary that the pediatrician thought everything was fine. You're right too. My friend thinks she's just a late talker because the doctor says nothing. She just left my house and as my 20 month old was jumping around, she says "'Julie' can't jump yet." and her daughter tried and still does it with one foot on the ground. When I made the kids lunch, she sat right down, but as soon as my one daughter came to sit next to her, she whined an ran away. It's like she's terrified of other kids. I changed her diaper and was talking to her, and honestly, I felt like I was talking to a 13-14 month old.
When my friend mentioned the jumping thing, I asked her if she callee EI yet and she told me she didn't have time. It is free in our state, but I will tell her that it may not be free after she turns 3 (whether that's true or not here. It may force her to call.).
Again, I appreciate so much all of your feedback. It's breaking my heart to see this sweet little girl possibly not get a fair chance because she isn't getting services she might need.
-Krista
iVillage Member
Registered: 01-19-2005
Wed, 08-29-2007 - 9:29am

Hi Krista,

First of all, your friend is very lucky to have you. I agree with Paula, take the softer approach. On the other hand, although I had my suspicions about my son even when he was a year old, it took my SIL calling me, saying she had talked to her friend who was a speech therapist and she thought my son had autism. At first I hated her for it, but now I thank her for it every day. My son got early intervention starting at 18 mos. and is doing really, really well now.

Second of all, and this is a pet peeve of mine so forgive my rant, but it is my experience that pediatricians are UNIVERSALLY CLUELESS about the early warning signs of autism. Developmental Peds are aware, but your average general practice pediatrician is likely to say, wait and see. If you have a boy, "boys talk later." I have many, many friends whose children are on the spectrum and EVERY SINGLE ONE had a pediatrician who blew off their concerns. Most say "there is a wide range of normal" which I am sure is true, but the pediatricians need to get a clue.

Say what you will about Autism Speaks, I have mixed feelings about them too, but the one thing I am grateful to them for is getting out the word on the early warning signs to the general public.

Also, I noticed that the questions my doctor asked about my son's development were not the same as those done by the early intervention evaluators. For example, my pediatrician asked if my son had two words other than mama or dada at age one. The early intervention evaluators said he should have had 50 words. He did have "one or two words" (more like mono-syllables that had meaning to me) so the ped thought all was well. Did the ped ask if he responded to his name consistently? No. I brought up the spinning toys, lining things up, she asked if he had other interests, which he did, so no problem. I asked about the toe-walking and hand-flapping and was told, "lots of kids do that and outgrow it." The early interention evaluators asked if my son pointed and carried toys to share with me (joint attention, he didn't have it at all) but the ped didn't ask about those things.

Anyway, sorry for the rant, just wanted you to know that the experience with the pediatrician, sorry to say, is by no means unusual.

Continue to gently nudge your friend. Even if she doesn't thank you now, she will later.

Katherine

iVillage Member
Registered: 04-04-2003
Wed, 08-29-2007 - 7:01pm

Katherine,

Please don't apologize for the rant. I'm livid with you! I find it just amazing that pediatricians can be so clueless! I mean, my friend doesn't work with kids, and her children are the only ones in her family right now, so she has no idea. If I didn't work with children all day, I might just think she was a late speaker too, especially if my trusted pediatrician said nothing.I don't think my friend has ever even met a child with autism, and would definitely not know there are different level of it either. How is it that teachers can spot this, but a pediatrician who also sees children ONE ON ONE all day, don't notice anything? I know I spend more time with my students, but it's disgusting that these doctors are letting so many of these kids slip through the cracks and miss the early intervention that they would benefit so much from! Okay, now I'm ranting.
Thank you for sharing your story. You mentioned the hand thing and that is something else her daughter does. She has a little stuffed animal that she twists in front of her face a lot.
Thank you so much. You're making my friends and me feel very good about what to do.
-Krista