QUERY:
I have a 4 1/2 yr old little girl that I have had legal custody of since she was 2 months old. She weighed 4lbs 3ozs at birth but she was not a early baby. When I got her she only weighed 6lbs 15 oz. Her mother was only 16 yrs old, drank alcohol and did all kind of drugs during her pregnancy. Today she will be 5 yrs old on June 5, 2000 and she weighs only 31 lbs and 9 ozs and she's 37 inches tall . When I got her from her mother my doctor put her in the hospital to see why she wasn’t gaining weight and why see spit up so much. We also went to the Genetic Clinic and that doctor told me she is very small for her age and her head is not growing with the rest of her body. What does this mean? Does it mean that her brain will stop growing also? Should I be concerned about this? I work with special needs preschoolers but I just want to know what I should be concerned about. Also, she does have seizures and she is ADHD and has fetal alcohol effects and defiant disorder. When I took her I knew that I would have problems but I just need to know what to expect and prepare her for Kindergarten this fall. Please help me. Oh I forgot to tell you what they found out while she was in the hospital: she had reflux and failure to thrive. Should I be worried about her size? They did tell me that she should have already caught up with other children her size. Help me please. Thanks a lot.
ANSWER:
I have a lot of respect for you and for the challenge you have chosen to
face. It sounds like your little girl is very special and I know she is
going to need quite a bit of special care as you raise her.
I understand your main concern is her slow growth, and that you are
wondering how you can prepare her for school coming next fall. I'm glad you
are thinking of this now, and I do have some suggestions for you. I don't
know what social services are like in your community, but I would hope that
they could help you with some of her special needs. If Easter Seals is
nearby,they may be able to help you. You can't expect to do this all by
yourself and should seek out and use all the help you can get for both you
and your daughter.
Fetal Alcohol Syndrome is most likely the reason for her slow growth, her
inability to catch up, her small head circumference, her hyperactivity and
her defiant disorder. She may not end up with 'normal' intelligence, but
that doesn't mean she can't reach her own best potential. Getting a handle
on her ADHD and her defiant disorder is very important because that is going
to affect her self esteem in the long run. Slowing her down may also help
her gain weight. Because I think most of her needs are related to her FAS,
I've given you a couple of links here to learn more about it, what to
expect, and to see how much you have in common with some other parents. You
are not alone, and others going through the same challenges can be very
supportive to you. Here is one of those links:
http://www.taconic.net/seminars/fas01.html
It does sound like you are getting very good medical care, and could
supplement that with social service assistance, or other local agencies that
help children with special needs. Working with special needs preschoolers,
you probably have a head start on what is available in your community. I
encourage you to use the Internet connections I gave you above to start
forming a support circle that can help you.
Good luck to you,
Dr. Kerr