HELP PLEASE!!!

Amanda - posted on 02/29/2012 ( 4 moms have responded )

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I really need some advice and support. This is very hard for me because I don't often ask for help, but I have reached my limit.. I will describe for you a very unique little girl (unique in my experience, if there are others out there, it is you I am asking to help!!)



My step-daughter has many delays and is very difficult to handle. We recently had her tested by a psychologist who declared her borderline, which gives us NO information about her at all. There is no diagnosis, no treatment, and no help to be had. She is in the 7th percentile, and only 5th and below is considered an intellectual disability and receives help, but the 25th is the low end of normal. She is so close to the disabled group but they won't help us!



Worse than that, is that we presented to the psychologist our concerns, and were given no advice at all. My step-daughter is 5 and a half and in Senior Kindergarten full days.



She regularly wets her pants at school, and overnight, after having been fully potty trained at age 3 and a half, and not having accidents for a full year.



She cannot be controlled at school, she attempts to leave the classroom, refuses to cooperate, she won't go out for recess but once out she won't come back in. She has so many more problems and I just don't know what to do anymore. I am trying to be patient with her. I don't get angry when she has accidents, she wears pull ups at night again because I can't keep up with the laundry otherwise but I still don't make a big deal of it.



She needs constant supervision because she puts everything in her mouth including paint, chalk, glue, markers, brushes, garbage, toilet water, poop, and her hands. She has chewed her nails right off and regularly breaks the skin on her fingers from constantly biting and chewing.



She looks like she may have fetal alcohol syndrome or effects and her bio mom admitted to drinking in excess. We are waiting on an apt with a geneticist to confirm.



In the meantime, ANY suggestions for how I can handle this, ANY ideas to help me and her teachers modify her behaviour, and a sympathetic listening ear would be great. Thank you all in advance.

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4 Comments

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Kelly - posted on 06/22/2012

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Kim Meyers- did they mention angelman or prader-willi to you. those are the two main disorders associated with 15q11-13 depending on which parent the deletion came from.

Kim - posted on 03/14/2012

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Hi Amanda,

Your daughters behaviors are very similar to that of my son. In kinder he would not sit down (ever) he had to have his own desk to sit at as he refused to siton the floo with the other kids. He does not like recess or lunch time. He says its too loud and the kids are all yelling at him. When he is at lunch recess most days he doesnt return back to class (he is now in first grade). The principal has to go as far as putting a loudspeaker call out for him to return to the office so he can be escorted back to class. When he is nervous he eats paper or like you said chews his nails down to the skin. He requires pull ups at night, and goes through spurts of having accidents at school. Earlier this year we went 3 months with him wetting his pants everyday at school. It was a control issue with him. If he didnt like what they were doing in class he would wet his pants. He knew that meant he got to go to the office and change. Which would equal at leat 15 minutes away from the classroom. An hour if he didnt have back up clothes at school and I had to bring them. The one blessing I have is that he did have a speech delay early on, and has had an IEP at his elementry school for speech since he was 3. We have since added RSP, and Occupational Therarpy. The occupational therapy is great!

I really feel for you, it is so hard to try to control behaviors that you have not control over. We have gone to so many doctors and psychologist and there were no answers just a bunch of what he DOES NOT HAVE. Does not have autism, asbergers, fragile x. etc........... You mentioned that you are going to see a genetecist soon. That is exactly what I was going to suggest. I wish we had been given that suggestion sooner, we were just reffered to one by our pedatrician in Feb. Our geneticist did a Micro array test. From what I understand that test is the BIG DADDY of all genetic tests. My son was finally diagnosed with a 15Q11.2 microdeletion. Basically his #15 chromosone is missing 4 genes. Apparently this explains his behvaior, developmental, and social issues. Unfortuanelty it is very rare and there is not much information on how to treat it. Which is how I found myself on this page looking for info. When I read your post my heart instantly went out to you! Good luck with the genetic testing, and push your school to get your IEP started. It makes all the difference in the world when the school is actively involved.

Amanda - posted on 02/29/2012

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They would probably have diagnosed her with FAS at birth if her mother had relinquished custody to my husand and I at that time, or at least followed through with any of the apt's we booked for her but unfortunately her first 4 years of life are even more messed up than her condition. Her mother took her away from my husband, dated a guy who abused her, she herself neglected her, and she moved residences 6 or 7 times before my husband and I got the local children's aid to take notice of the issue. We had been calling and reporting weekly with no result for 2 years.



She does not have autism, she is a very social child, very affectionate and has no symptoms of any austistic disorders.



Again because of custody she did not receive any help before school which is a shame.



She does not yet have an IEP but we are hoing that one can be developed for her. We are waiting on the school board to review our request to have her placed in a special needs class for those with Mild Intellectual Disabilities which would mean a smaller class size, but for now, we are still have reports daily (or several per day) of her behaviour affecting her, her class, and her teachers, and even other teachers, volunteers and the principal have had to get involved.

Brooke - posted on 02/29/2012

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Wow, it sounds like you have a lot on your plate! I don't know a lot about FAS, but, it seems to me like they would've diagnosed that at birth or shortly thereafter?



Has she ever been tested for any of the autism spectrum disorders?



You mentioned that she is in school, does she have an IEP? I would start with the school and work backwards.



Did she receive any kind of help or services before starting school? My son was born prematurely and has a genetic condition, he came home in the Early Intervention program where he received speech, occupational and physcial therapies for about 2 years.



An occupational therapist could help you with behaviour modification if that's what she needs. My son has Sensory Processing Disorder and the OT is who helped us with therapies for it. Now, at 6 he exhibits very few of the behaviours that he had early on.

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