A mom's journey with 22q11.2

A mom's journey with 22q11.2

I have a 26 year old daughter with 22q.11. I've learned a lot on this journey. Some things might be helpful to some of you, but due to the nature of 22q.11, and how the syndrome manifests differently in each person, some things might not be. I'm simply hoping that people will become educated about this interesting genetic syndrome.

Episoder(30)

Sunday chat - Spirituality and 22q11.2

Sunday chat - Spirituality and 22q11.2

We all seem to "feel" things spiritual a little differently. Speaking things of a spiritual nature is also very individual. Both may present a challenge for an intellectually disabled person, but it doesn't mean that they don't experience those feelings. Sarah usually experiences them through love.

23 Feb 202015min

What about group homes?

What about group homes?

After people ask me about independent living they usually ask about the possibility of a group home. It's a good question. In the area that I live I have not found group home accommodations, but that may be different in your area. You will also need to take into account the level of disability in these group homes, because if your child is anything like Sarah, they will be extremely aware of these differences.

22 Feb 20208min

Can a person with 22q11.2 live independently?

Can a person with 22q11.2 live independently?

I get asked this question a lot. The short answer, I believe, is ‘yes’ but I haven’t figured it out yet, and this podcast episode explains why.

21 Feb 202012min

Interview with Hannah, Sarah’s youngest sibling.

Interview with Hannah, Sarah’s youngest sibling.

This is a very unplanned, raw interview. We hope this gives your some insights into a sibling’s perspective.

16 Feb 202028min

Got interrupted on the last episode ☺️

Got interrupted on the last episode ☺️

Final thoughts about taking care of the caregiver.

15 Feb 20203min

Take care of the caregiver part 2

Take care of the caregiver part 2

This episode got cut off because my husband called. But it's am important episode. ☺️

15 Feb 202013min

How having a child with special needs has affected our marriage.

How having a child with special needs has affected our marriage.

Happy Valentines Day! Statistics have shown that having a special needs child increases the stress on a marriage. It's important to me to take regular inventory on where our marriage is at, and what we need to do to keep it strong.

14 Feb 202028min

How having a child with special needs has affected our family.

How having a child with special needs has affected our family.

It took a long time for me to see the effects that having a disabled child had on our family. Each individual was affected, and coped with the family dynamic differently. Looking back I wish I'd seen each person's difficulties more clearly, however, even those difficulties brought about beautiful characteristics in each member.

14 Feb 202020min

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