[tri-med] Re: New folks on the list

Dear Nan,

As always Dom's story fills me with a mixture of sadness and joy. 
When I think of how you have BOTH struggled to get him this far, I 
feel so proud of both of you. You certainly cheered me up with this email.

At 07:01 PM 17/06/2009, you wrote:

>In a message dated 06/16/2009 8:45:05 PM, hatfield98us@xxxxxxxxx writes:
>
><< Never give up hope for your sons. You are their biggest advocates in
>this world.
>
>Susan >>
>
>Guess I had better jump in here. My son, Dominick, is 25 years old. He has
>Trisomy 18, mosaic. He was in a combination of regular and special education
>classes all through school. When he was 14 he started having some very
>difficult behaviors and eventually we had to place him in a residential
>treatment program. After about a year, he was diagnosed with 
>childhood onset Bipolar
>Disorder. With a couple of more years of mental health treatment, he was
>able to exit the residential program and return home and to the local high
>school to finish with the same kids he started kindergarten with. It 
>was quite
>an accomplishment and he was the first student in our school district who
>was able to successfully transition back to regular school. He started
>volunteering in the local YMCA child care program and was hired as a 
>child care
>assistant when he transitioned out of high school. He was living at 
>home, but a
>couple of years later, he decided that he would rather live in a board and
>care type home than have me "boss" him around. He had great autonomy and
>continued to work which meant he had to ride busses for over two hours each
>way. He did just fine for about four months and then just wore out trying to
>keep up the schedule and he quit his job. He continued to live away from home
>and did not get into too much trouble for four years. Last fall he decided
>he did not need to take his bipolar meds and in the process of lack of
>medication supervision and his up and down mood swings, he ended up 
>with lithium
>toxicity. The doctors treating him gave him a psych med that he is allergic
>too, in spite of the fact that they had the information that he was and as
>the medication (Risperidal) started to shut down his neurological functions,
>the docs decided he was showing them typical Trisomy 18 symptoms and did not
>believe me when I told them he had been a normally functioning person two
>weeks earlier. After an eyeball to eyeball confrontation with the 
>psychiatrist
>that had originally prescribed the Risperidal, they took him off, but I
>still had an internist that was bound and determined to get Dom on a vent and
>he wanted to do a g tube. I stood guard over my son for four days and as he
>came out of the Risperidal induced near coma, he started to talk coherently
>to nursing staff and on the fifth day he sat up and ate a full meal, all the
>time wondering why he was so hungry. Dom was released the next day. So in
>the eyes of the doctors he went from being this anomaly of Trisomy 
>18 male, 25
>years old (who in their opinion was nearly non functioning and they had
>told me I had better get used to him as he was, because he was only going to
>get worse) to a fairly normal young man with a severe mental illness and they
>wanted nothing to do with him. I joke about it now. I say they must have
>thought Dom had sudden onset severe Trisomy 18. But it really is not 
>funny. It
>just shows the bias about rare trisomies, no matter how well the kids do.
>Dom is fine now. He is living in a new group home with an emphasis 
>on treating
>individuals with developmental delays and mental illness. He medications
>are handled appropriately, he is in a great day program where one of his jobs
>is to shadow a young man that just needs to have someone to talk to him and
>keep him entertained. He also rides horses twice a week, has lost all the
>weight he had gained in the past few years and regained his strength and
>agility that he had at the first Chicago conference. He has just 
>reached level
>four which means he is able to go out on his own again, just as he had been
>used to doing for the past few years. His ultimate goal is to get into some
>kind of independent living where he has his own apartment with maybe a
>roommate who will be able to help him stay on track with his meds 
>and make sure he
>is eating healthy. He has done so well in the last few weeks, I am sure he
>will eventually reach that goal.
>
>Nan-mom to Dom, 25, tri 18 mosaic and bipolar; and Ali, 25, autism, TS, ADHD
></HTML>
>                   Building ___ooOOoo__ Rainbows
>                        www.trisomyonline.org
>                   Families Helping Families On-line
>
>
>
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>06/17/09 17:55:00



Jocelyn,  wife to Frank,  Mother to Ian, Gillian and Susan, Nanna to 
Carly 22  Mathew 20,  Ashleigh 19, Alex 17,  and Tess  (Trisomy 18,) 
age 12 yrs,  & Benny the Maltese, plus one amazing DIL and two 
amusing SIL's of whom I'm very fond, and their extended family who 
are too many to list here.   

                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

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