Claim OwnershipA mom's journey with 22q11.2
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© Kristi Allen
Description
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.
30 Episodes
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Just some thoughts.
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.
People with intellectual disabilities are often unaware of their personal hygiene. Teaching hygiene when they’re young may be helpful.
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.
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!
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!
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.
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.
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.
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.
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.
This is a very unplanned, raw interview. We hope this gives your some insights into a sibling’s perspective.
Final thoughts about taking care of the caregiver.
This episode got cut off because my husband called. But it's am important episode. ☺️
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.
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.
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.
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.
Jobs are tricky. When looking for employment be certain to communicate limitations and the need for potential accommodations.
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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I am loving your podcasts, so relatable, thanks so much for sharing!