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Joined: Jun 2005
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I appreciated Terri Mauro's comments about the issues of advocating for teens and adults with disabilities discussed in Peggy Lou Morgan's book, Parenting Adults with Disabilities or...s Future.


I believe our advocacy efforts from birth to age 21 have a great deal in common with the effort we put in to childbirth preparation classes and planning. Our sons and daughters spend most of their lives in their adult years, so no matter how energetically we focus on their childhood and transition, there are many joys and challenges in the years ahead that can take us almost completely by surprise. Getting to know our children as adults is at least as interesting as getting to know them as babies and children. And of course we probably also will wish we knew now what we will know then.

Any comments, books, or articles you can recommend to help other parents to prepare (or cope) - please share.

Thanks!

Pam W
SE of Seattle

Teens with Disabilities - Transition to Adulthood



Pamela Wilson - Children with Special Needs Editor
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Thank you, Pam, for these articles and resources. I have been given a shocking blow as I only recently learned that my adult daughter has the same genetic disorder that killed my son.

Her symptoms had been increasing after puberty but we were told that girls could not get this genetic disorder as it is X-linked. In any case, the past six months of testing revealed that she indeed does suffer from this. She has been changing rapidly over the last two years. Soon she will undergo enzyme replacement therapy which she will need for the rest of her life.

My head is reeling from the news and the realization of her changed future.

What a shock to see your "typical" healthy daughter morph into a increasingly disabled person. I am too upset to even begin to research her transition into adulthood (she turns 21 late this year.)

Thank you for doing this for me.

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Lori,

My thoughts and prayers are with you and your daughter. These are the days when we are hard-pressed to find what strength and comfort there is to help our children through the most difficult times. Don't forget that you can call upon friends and family for support and encouragement, including those of us online who admire and feel deep affection for you through reading your articles and comments.

Pam W
SE of Seattle

Originally Posted By: Lori-Marriage
Thank you, Pam, for these articles and resources. I have been given a shocking blow as I only recently learned that my adult daughter has the same genetic disorder that killed my son.

Her symptoms had been increasing after puberty but we were told that girls could not get this genetic disorder as it is X-linked. In any case, the past six months of testing revealed that she indeed does suffer from this. She has been changing rapidly over the last two years. Soon she will undergo enzyme replacement therapy which she will need for the rest of her life.

My head is reeling from the news and the realization of her changed future.

What a shock to see your "typical" healthy daughter morph into an increasingly disabled person. I am too upset to even begin to research her transition into adulthood (she turns 21 late this year.)

Thank you for doing this for me.




Pamela Wilson - Children with Special Needs Editor
Visit the Children with Special Needs Website
Joined: Dec 2008
Posts: 739
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Thank you Pamela. It is such comfort to read your words.

Of course, I will be reading your site regularly and keeping in touch.


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