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A mom's journey with 22q11.2
Kristi Allen
30 episodes
1 day ago
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.
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Parenting
Kids & Family
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All content for A mom's journey with 22q11.2 is the property of Kristi Allen and is served directly from their servers with no modification, redirects, or rehosting. The podcast is not affiliated with or endorsed by Podjoint in any way.
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.
Show more...
Parenting
Kids & Family
Episodes (20/30)
A mom's journey with 22q11.2
Hygiene
People with intellectual disabilities are often unaware of their personal hygiene. Teaching hygiene when they’re young may be helpful.
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5 years ago
13 minutes 15 seconds

A mom's journey with 22q11.2
Black Lives Matter and 22q11.2
Just some thoughts.
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5 years ago
20 minutes 17 seconds

A mom's journey with 22q11.2
Conversations about world events with a 22q11.2 individual.
All the events happening in the world right now are really confusing for anyone, but imagine how confusing it is for an individual with intellectual disabilities. Our conversations matter. These issues can bring fear and anxiety. It's our jobs as caretakers to explain world events simply and very carefully. Our conversations with others need to be monitored because even though your child may not be the one you're talking to, they may be listening, and are trying to make sense of everything they are seeing on TV and hearing all around them.
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5 years ago
19 minutes 17 seconds

A mom's journey with 22q11.2
Season 1 finale - The Cliffhanger! 😁
It seems fitting to end this season now - when the world awaits the current coronavirus Cliffhanger. May God bless you in your journey, and know that I truly believe that God sends extra angels to protect families with special needs children.
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5 years ago
14 minutes 27 seconds

A mom's journey with 22q11.2
Train of Thought
The thinking process can be interesting, and sometimes genuinely doesn't seem to make any sense. You can respond in different ways. That's YOUR choice, and, trust me when I say that can I say that empathetically. Either you can get frustrated, or annoyed or you can find humor in it, OR if you're really feeling patient you can try to follow the train/trail of where the thought began and how it led to the verbal communication. Good luck!
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5 years ago
13 minutes 45 seconds

A mom's journey with 22q11.2
Always Thinking For Two
Thinking for two can be EXHAUSTING! I personally believe that it means we're not only amazing, we're also freaking brilliant! Here's why!
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5 years ago
22 minutes 24 seconds

A mom's journey with 22q11.2
Caretaker Guilt
A person with 22q11.2 will (most likely) not have the same level of productivity that you have or that you'd like. You may not be okay with that, but they will, and sometimes it causes guilt.
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5 years ago
18 minutes 32 seconds

A mom's journey with 22q11.2
Interview with Brooke, Sarah's sister.
Brooke is 23 years old, has her nursing degree and has a 6 month old baby. The interview got cut short, (my phone rang) but I was pretty much done. I hope something is beneficial to someone.
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5 years ago
24 minutes 9 seconds

A mom's journey with 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.
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5 years ago
15 minutes 43 seconds

A mom's journey with 22q11.2
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.
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5 years ago
8 minutes 5 seconds

A mom's journey with 22q11.2
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.
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5 years ago
12 minutes 37 seconds

A mom's journey with 22q11.2
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.
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5 years ago
28 minutes 39 seconds

A mom's journey with 22q11.2
Got interrupted on the last episode ☺️
Final thoughts about taking care of the caregiver.
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5 years ago
3 minutes 42 seconds

A mom's journey with 22q11.2
Take care of the caregiver part 2
This episode got cut off because my husband called. But it's am important episode. ☺️
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5 years ago
13 minutes 4 seconds

A mom's journey with 22q11.2
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.
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5 years ago
28 minutes 10 seconds

A mom's journey with 22q11.2
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.
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5 years ago
20 minutes 53 seconds

A mom's journey with 22q11.2
Humanitarian Work!
A desire to live life isn't any different for an individual with special needs. I'm so glad that we've been able to find ways to make that happen for our daughter.
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5 years ago
11 minutes 23 seconds

A mom's journey with 22q11.2
Work and accommodations part 2
This subject is hard. Trying to explain to someone why it's hard is...hard!! Don't let people who don't understand your situation make you feel inadequate. This is tricky business. If your state has good accommodations for helping your child get a job, and keep a job, then get them involved.
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5 years ago
43 minutes 21 seconds

A mom's journey with 22q11.2
Work and accommodations part 1
Jobs are tricky. When looking for employment be certain to communicate limitations and the need for potential accommodations.
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5 years ago
16 minutes 18 seconds

A mom's journey with 22q11.2
The first rule in any emergency: REMAIN CALM!!
This episode is about dating and your special needs child. Things may happen that make you feel uncomfortable, however, overreaction never helps anything or anyone. Remain calm.
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5 years ago
22 minutes 35 seconds

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.