My worries and concerns as a parent to a child with 22q11.2 deletion
My top 22 worries
1. When I was growing up I watched my siblings struggle with 22q issues from feeding issues to learning and developmental delays. I had none of those issues. I was told feeding issues is one thing I struggled with and seizures and I out grew both of those things. I wasn't tested until I was 21 years old.
2. People think because I have 22q I have special needs. They think I hear voices in my head because that's what experts advice suggest based on a controlled group of people who have mental health issues with 22q. Those people who had mental health issues like hearing voices and seeing things that are not there were not tested until this study. Yet it is being pushed around like it's the bible and end all be all. There are people who have endrochronic issues like hypocalcuma and a few others who just simply need other forms of treatment then psychotic medications to put a bandaid on a complicated genetic problem. I do not hear voices, I do not see or hear things that are not there. So does that mean my genetic test was a fake a false positive test? I have other issues that relate to 22q I did not have to deal with until I became an adult. Such as early menapause. I am in the periomenapause stage. Hot flashes are not fun
3. Am I looked at as less than a mom, employee author speaker because I am a adult who looks younger form my age thank you very much vcfs velocardiofacial syndrome that's part of the 22q deletion
4. am I excummicated from support groups because my story and ideas are different then the parents who have kids with 22q am I not relatable because I am an adult with a disablity in their minds. For the adults do I relate well becuase I am a mom and step mom and I have entered the early stages of emptyness syndrome. Our youngest has 22q and is turning 11 on April 27 does that mean I'm not apart of the parent or the adult crews?
5. Where do I fit in? who do I fit in with/
6 I was born to stand out I am rocking my Q and my daughter she while she's rocking her q notice upper case for adults and lower case for kid's.
7. am I or am I not a 22qtie I'm still cute right ?
8. syncope effects my ablity in driving working passing out will it ever go away?
9. If doctors keep finding cures for Ed why can't they stop playing with their dicks for one minute and work on real research ? oh right funds money cash
10. I'm vulgar if I cuss I am not old enough or mature if I use a few choice cuss words. I'm Canadian it's what we do when we become passionate and it often will slip out when pissed off. oops sorry not sorry spread the gossip Amanda cusses that's all you have on me go for it.
11. Gossip instead of support prayer chains becoming a way to gossip and not actually do anything productive and focus on the real issues. I'll pray for you. Really? you'll gossip and be all concern about my stomach issues and act like I'm on death's door. Will you offer support if I'm crying in pain from exhaustion of having to be stronger then I really feel?
12. Odn't even get me started on eliminating down syndrome in Iceland will they do that next to all others who have other chromosome disorders once they learn and understand genetics defects 101. Will they realize that 22q is next to downs? We don't look like a downs person so because we can hid our defects under an invisible illness we are of more worth and value? Pro life pro choice is not the issue there is it than? Law of broken ethics
13. Precision med that's all I'm putting about this here who idea was it to start playing God the debated topic the help and harm it does
14. CBD oils a fad or treatment that helpful that the government is trying to make more bank on instead of allowing it to help and do any of the good it can do. I have seen some amazing things from other parents who resulted in learning and using cbd as a treatment however with insurance you have to go though the ends of the earth in order to get any kind of medial assistance with it. The miss use of people doing it just to do it is ruing it for all of those out there who it will help. much more research is needed
15. education employment insurance income all overwhelming emotional garbage we all have to face but with a genetic target on your back saying I have 22q look at me can be harmful or helpful depending on which funding programs you apply for. How seriously you want to be taken based on your talent not genetics
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