[TNfostermom]

We have had baby girl S for about six months. She is 14 months old now. We have found out that she has maternal PKU fetal effects. Her mom has PKU (she can't process any protein, so she is not suppose to have any protein foods as a child or when pregnant). Mom didn't stay on diet as a child and is mentally retarded because of that. She also didn't stay on diet while pregnant. That caused her baby to be mentally retarded, with an IQ in the low 50's, have possible heart problems, ADD, behavior problems, lazy eye and the facial characterics of the syndrome.

I am having a hard time with her some of the time. I think it is bacause of her mental retardation. I had worked with special needs children in the past but never lived with one. I was wondering if anyone had any advise on how to deal with her issues.

The problems I am having are: she puts food in her mouth and won't swallow it, she will not use a sippy cup, she does not listen to directions at all, she will not try to walk, she is very jealous of our other foster baby, she does not like to be held.

They are going to start unsupervised visits with her parents soon, then go on to overnights, so she should be going home in the next few months.

[leastofthese]

"The problems I am having are: she puts food in her mouth and won't swallow it, she will not use a sippy cup, she does not listen to directions at all, she will not try to walk, she is very jealous of our other foster baby, she does not like to be held."


The sippy cup usage and the not swallowing are issues you could have addressed by an occupational therapist or a speech pathologist. You might have to ask for a feeding specialist.

As for listening to instructions or trying to walk, you said she was mentally retarded. Retarded means slow, so all of her milestones and her level of understanding will come much later than her same-aged peers. She likely doesn't understand how to go about following instructions. Nor is she developmentally ready for walking. There are some perfectly healthy children who don't walk until 14 months of age. 14 months is not unusual to still be crawling or scooting when you have a mental disability involved. My two 3-year-olds are both still crawling, and neither of them used a sippy cup until nearly 2 years of age.

Have you contacted your early intervention agency yet? We have First Steps here in Kentucky, I'm not sure what your agency is in TN. Your social worker should know, or you can contact the health department. They can come to your home and do an evaluation to see if she qualifies for Occupational, Speech, or Physical Therapy, as well as sometimes Developmental Intervention. It sounds from your post like she would be a good candidate for all 4 of those services.

The bottom line is that her bahaviors are going to be more like that of a child 1/2 her age or less, even. Try looking at her that way and see if it doesn't lessen some of your frustrations.

It IS hard to live with children who are so involved developmentally, especially if you haven't been down that road before. Get educated about what to expect, and most of all get her the help she so desperately needs. I'm surprised if her worker knew she had these issues (PKU, etc) that she is not already enrolled in early intervention services.

If you need help getting her services going, PM me. I'd be happy to do a little digging and see if I can come up with contacts for you.

[momofmykids]

You need to get the child's cw to get a referral to TEIS (Tennessee Early Intervention Services). We've used them and they are great.

[TNfostermom]

Sorry, I should have put that in my first post. We are involved with TEIS and she is in speech. TEIS has TIPS working with her. The TIPS lady is an older lady (in her sixies I would guess) and she is not really working with her when she comes each week. She just sits around and talks with me.

Her speech therapist, on the other hand, is great. She even babysits her once in a while. She has suggested trying different sippy cups (which I did, she won't accept any of them) and she has suggested just continuing to work with her about the food issues. She does OK with stage three baby food, most of the time. It is solid or table foods that I am having troble getting her to eat.

I do realize that she will be delayed in most areas and I am not concerned that she is not walking or talking yet. I guess I just get frustrated once in a while because she has so many issues going on.

[leastofthese]

It is very hard. Especially when you are dealing with an already full plate with 3 other children. I know that for my kiddos, we have 4 therapies, 1 hour per week for both kids. Thats 8 hours of therapy. I also homeschool. So I know what you mean when you say it's a lot to deal with.

Have you had an occupational therapist working with her? I ask because it's possible from what you are saying that she may have some oral defensiveness. That means she would be sensitive to textures, etc.

We do deep pressure around the mouth and pressure to the center of the tongue, and then sweeps along the roof of the mouth. Your speech therapist should be able to do some of these things.

But you know, sometimes it's not really an activity or exercise that makes the change, sometimes it's just TIME! I know it's hard to wait when they're on the threshold of a milestone. My 3 year old girl is trying so hard to walk. She gets up and holds on with just one hand, and I can tell she wants to let go and WALK, but she just can't make herself.

Hang in there and remember YOU are the only advocate for this little one! Get her all the services she's entitled to. It will make the biggest difference in who she is able to become someday. These first 3 years are priceless, and you can never re-do what is lost in these years.