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| Mon, 01-02-2006 - 12:36am |
Hi! I'm new to the group! I've been lurking here for a few days and finally decided to introduce myself. My name is Amy and I'm a SAHM, married to a wonderful man, and I have two beautiful little girls. My youngest is 3 and she has recently been dx'd with PDD-NOS. She has had a difficult life so far. She has struggled with severe reflux and currently takes Prevacid to keep it under control. She also is allergic to milk and eggs. She has low muscle tone, a neuropathy, and a very small hole in her heart. She is developmentally delayed as well. She also has two hair shaft defects, so her hair basically looks like white-blonde peach fuzz in most places. I'ts trying to grow on the top lately. Because she has so little hair (she's been mistaken for a cancer patient), so looks much younger than she is. So, as a result, people don't realize that she is developmentally at about a 2 yr old level. On a good note, she learned to walk independantly a month before her 3rd birthday! We were so excited because we thought she would never be able to walk. She said her first word at about 2.5 yrs. She started special ed preschool a few months ago. We've seen tremendous progress in her since she started school. She is now combining 3-4 words on a fairly regular basis. My husband and I have known that something was "different" about her behavior for quite awhile, but her ECI therapists felt that she was probably not autistic. We decided on our own to have her evaluated. At the time we had her evaluated, some of things she did that concerned us were: an obsession with lights--she pointed them out wherever we went. She would become very upset, and melt-down, like she was in pain if a light bulb was burned out. When it was replaced, she was immediately calm and looked like relief just washed over her whole body. She was very upset with any change in her routine. She was obsessed with seatbelt buckles. She would list people in the family, including those in the car, followed by the word "buckle". We had to assure her that everyone was buckled. She also didn't like to be touched by others. She would never initiate affection and if we hugged her, she would often-times hit us in the face afterwards and then giggle about it. She seems to have a lack of empathy for others. About a week after her evaluation, she started preschool. We have seen a tremendous change in her, for the better. She no longer points out lights wherever we go. She still likes lights, but pointing them out is no longer her sole purpose. She doesn't seem to be as bothered by people touching her. She doesn't melt-down over changes in routine quite as often as she did. She even offers hugs without being asked. She still has a problem with hitting or pinching others, but it's not in an angry way. It's like she doesn't know the proper way to show affection. She still hits herself in the head and pinches herself when she gets angry. Instead of lights, she now seems to be focusing on the colors of things. She will say the names of different colors for no apparent reason. For instance, on Christmas, I asked her to say "Merry Christmas" Well, to my amazement, she did a pretty good job saying it, but the odd thing was that she said "purple" Merry Christmas! Then she went on with red, blue, green...Merry Christmas. She does that quite often with colors. She doesn't really play with the other kids at school. Sometimes she will venture off with one of the kids, but she doesn't usually initiate it. She tends to stay to herself, like she doesn't know how to play. She also doesn't respond well to her name. Her hearing has been tested and it's normal. She will give another child a high-5 if they ask her to. But, if they say "Hi!" to her, she just ignores them. She will say hello to the straw in her Dora cup (it's one of those that hides the straw when the lid is closed), but she won't say hello to people. She will say "bye" though. She also will repeat things that others around her say, no matter whether they were talkig to her or not, but she will precede the pharse with the word "No". For example--If I were to say "I bought a candle today." She would say "No buy candle". Is this something that children with PDD-NOS do? I guess I'm just confused because one day I think that maybe she is not on the spectrum, and then the next day, she will do or say something odd and then I will remember why the eval. said she has PDD-NOS. Is this common? She has improved in so many ways and I can't help but hope that maybe she will eventually catch up with her peers. I wonder too if the dx is correct anymore since it was done before she started school and improved so much. I'm sorry this is so long. I just wish I knew what her future holds. Will she always have PDD-NOS or is she just delayed and has some quirky habits? Her geneticist has yet to find out what syndrome or disorder she has that has caused all of her different symptoms. So, we have no way of knowing whether her behavior is because of a syndrome or disorder, or whether autism is just another symptom of what has affected the rest of her body. Thanks for reading my long intro and vent. I look forward to getting to know you all better.
Amy

Hello Amy and welcome :)
Youre little girl sounds darling and very bright. I am sorry you are having such a struggle to find answers for her, but this is not uncommon, and your search may take some time, I'm afraid. (I am not telling you this to discourage you, but to try to set your expectations some and let you know you are not alone)
It sounds like you are doing everything right. You have identified issues in plenty of time. You are getting help for her, which seems to be working, and you are continuing the search for answers.
Have you had her evaluated for sensory issues? It might be a good idea -to round out the picture. An Occupational Therapist trained in Sensory Theory can do this. Ask about it at the preschool.
I can't say if her speech patterns are PDD or echolalia or some unique style all her own. I would keep an eye on it, and talk to her speech therapist and/or psychologist.
Sorry to be so little halp.
-Paula
visit my blog at www.onesickmother.com
Thanks for your reply. I looked up SLOS. I don't think that Lily has it. From what I read, 90% of children with it have microcephaly and Lily has a rather large head circumference and frontal bossing. She has a few of the symptoms, but not many. I'm going to ask her geneticist about it, though. It's a metabolic disorder and a few doctors over the years have suggested that Lily may have a very rare metabolic disorder. Again, thanks for the info.
Amy
Hi Paula! Thanks for the welcome and the suggestions. My dd, Lily, has been tested for sensory issues. We had her evaluated by an ECI OT when she was about 2.5 yrs. She said that Lily didn't have a problem in that area, but dh and I were not convinced. So, when she started the PPCD program, we requested another sensory eval. This time, a different OT concluded that Lily has significant sensory issues. It was a relief, in a way, to know that dh and I were not just imagining things. She was evaluated just a couple of weeks before the Christmas vacation, so the school hasn't really had a chance to really start working with her on sensory therapy yet. The OT is on a consult basis only, because she feels like the teachers and aides can handle helping in the classroom setting. She did say, however, that if we don't see enough improvement in the next few months, then Lily can have OT put on her schedule. She already has PT and ST and they don't want to overload her. She has improved so much just by being around lots of other children. My hope is that she will continue to improve. Again, thanks for the warm welcome.
Amy
Hi Amy!
just wanted to say, Welcome! and also, it sounds like you're doing a great job w/ all things that Lily needs! I'm not very experienced in the whole ASD realm but lots of things you say Lily says or does sound like my son when he was this age. He was much older when we finally pushed for special therapy. He's now 9, and with lots of OT and ST, he's doing great, he is doing great in school and he's progressing in the whole speech and social aspects as well. He'll probably always seem a little "strange or eccentric" but he's learning lots and able to navigate in the school world w/ help.
hope you get the answers she needs, and I'm so glad she's doing great at school!
Betsy