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

Hi Nan
Thanks so much for sharing this with us, you and the other Mums are a real 
inspiration to me.

Denise 




________________________________
From: "NanlorW@xxxxxxx" <NanlorW@xxxxxxx>
To: tri-med@xxxxxxxxxxxxx
Sent: Wednesday, 17 June, 2009 10:01:52 AM
Subject: [tri-med] Re: New folks on the list


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

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