[ Post a Response | Trisomy 22 and Misc. 22 Interest Board ]
Posted by mechille burke --Previous Message-- Mechille
on 2/21/2006, 1:56 pm, in reply to "Parenting Over the Years"
66.115.96.112
: My son is now 20 years old. As an infant
: and toddler, he presented a number of
: atypical conditions that defied
: classification for a long time.
: Ultimately he was diagnosed with
: DiGeorge Syndrome/velocardiofacial
: syndrome. In dealing with this over
: the years, one thing I've learned is
: that children with these conditions
: have a wide variety of symptoms and
: needs. Nothing seems standard - all
: are different.
:
: I just want to encourage parents to
: hang in there. Help your child get
: treatment for the problems that are
: treatable and teach them how to be the
: most they can be despite the ones that
: can't be changed.
:
: Especially in his first 5-6 years, we
: went from specialist to specialist -
: all sorts of surgeries and therapy.
: Then we got to the place we realized
: he's ours and we love him no matter
: what. Life became a lot more sane
: after that point. We still made sure
: he got all he needed but no longer
: obsessed in a search for the miracle
: "cure".
:
: Brad's a sweetheart. He graduated from
: high school with an occupational
: diploma and now works at a sheltered
: workshop. He has areas where he still
: struggles, yet also has areas where he
: amazes you with his intelligence and
: insight. Anyone who knows him will
: tell you he's a great young man.
:
: If I can help anyone struggling with
: issues of parenting their very special
: child, please contact me. I am also a
: career social worker so know the
: system from many different angles.
:
:
:
Wow....What an inspiration just hearing how you have overcome so much. it gives me hope.
Thanks for sharing and offering your support
Mom to Jared (22q12.1 duplication), Amanda 14 and Jenna 10
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