“What I Wish People Knew About 22q” – 70 Parents, Kids, and Family Members Speak Out

Prior to the launch of Just Jen: Living With Invisible Differences, I wanted to know what other parents, kids, and families wished that other people knew about 22q.  I received an immense number of really amazing responses (shared below), but two really stuck out to me:

I just wish they knew about it.

and

How frustrating it can get trying to explain it to others.

The two things that hurt most are a lack of knowledge and then lack of sympathy / empathy.  It’s why I wrote the Invisible Differences Manifesto and Just Jen: to help educate others, especially other kids.

My hope is that this post would serve as a first-hand account to help educate others and lead to more sympathy, empathy, and understanding of what 22q is and isn’t.

Click here to get a free sample chapter of Just Jen and click here to get free coloring pages to help teach your kids and students about invisible differences.

22Q – What Others Wish You Knew

“I would love to have people realize how varied it can be. You can have it severely or mildly. And you can have the immune version or another version, each with their own risks.  Also, how taxing and isolating it can feel / be.”

“I want people to know how much it can change your daily lives, but really I just want to be treated like everyone else. My mom understands how difficult it can be, but she never fully gets it and I’m 29.”

“To have a bit of sympathy for whomever has 22q because everyone has a hard time with it. I have 22q and I feel like doctors don’t even have a clue what it’s about.”

“Have sympathy for the parents of young ones with it. As no one ever seems to understand how difficult it is to deal with it as a parent too. The looks we get when my child has a melt down or just screams because he is happy or when I have to hold him while he screams when I sit him in time out for something. It’s stressful.”

“How different it is for each person. That is isn’t a one-size-fits-all diagnosis.”

“AWARENESS. It’s way more common than most think yet goes undiagnosed unless there are multiple clear symptoms.”

“Don’t be afraid to go to research on it and ask questions.”

“Just because someone has 22q doesn’t mean that’s the answer to every problem that comes up (I want docs to be willing and to look outside the box if there’s an ongoing issue that’s causing problems and distress, not just guess it’s because of 22q).  I get tired of the doctors using it as an excuse for lower standards regarding my child when it comes to weight, etc..  We can always aim for higher.”

“To know that no matter what, your child needs your love. That you need to be their voice and advocate for them because a mother has a gut instinct and needs to speak up when something doesn’t seem right. That is ok to cry. Ask questions. Reach out to others who have a family member with 22q because they become the experts.”

“That there are so many different anomalies… and just how rare Complete DiGeorge is.”

“I wish there was a global understanding of the syndrome. Not asking that everyone be an expert……just be familiar with it. We say 22q and people look like we just spoke unknown alien language. It’s annoying.”

“I wish more people knew about it as a whole, that it’s more common than they think.”

“That without Medicaid, my son wouldn’t survive it!”

“How common 22q actually is.”

“How much an earlier diagnosis to help people growing up.”

“What are the challenges are in high school/college regular education class.”

“How important it is to advocate for creation of an accurate IEP and enforcement of the IEP. There is always one teacher that won’t follow IEP.”

“Doctors don’t take you seriously and often brush me off.”

“How much more training our schools special education teachers need on what 22q actually is.”

“I have a serious lack of stamina and it’s extremely frustrating when people think that I’m being lazy.”

“Children can have serious teeth issues. My son only had his baby molars sealed. Teeth issues are a must to know so our kiddos can get the dental help they need. My son also had to get treated for 3 cavities. Teeth issues with my kid have nothing to do with poor hygiene.”

“That you can still have 22q without any heart conditions (I believe this contributed to a late diagnosis with my son at nine years old).”

“That their behavioral issues is not due to the parents not trying and that DiGeorge is a terrible disability. I constantly get asked if my son is autistic (has not been diagnosed with autism) and when I say “no he has DiGeorge” they just give me this this disappointed look like I’m failing or something. Apparently autism is just so much worse than DiGeorge to these people. It frustrates me that people don’t see how terrible and frustrating it is.

I get asked often if that is why he acts the way he does. He had a dentist appointment yesterday and a new girl kept trying to get him to do X-rays. He doesn’t understand to hold the thing in his mouth and he hates doctors as it is so he had a huge melt down. When they tried brushing his teeth (we skip cleanings as he won’t allow it) he freaked out and just screamed the whole time. We came out frazzled of course and the receptionist asked if he was very autistic. As soon as I said he has DiGeorge, not Autism, she just kinda dismissed us. He is a very energetic child. I don’t want him to be put on the spectrum by any means. I just wish people understood that, though he isn’t on the spectrum as of now, doesn’t mean his fits are just me being a bad parent. Luckily he has hearing aids so many people automatically think his behavior is caused by something unseen.”

“My dad has resisted “labeling me” because people judge you when you have a label, it’s as simple as that. It’s not the fact that YOU/me are ashamed of the diagnosis, it’s the idea that it would make the world THAT Much of a harder place to live in. At least that’s what I am going through as an adult, and I’m sure that was what was in my dad’s mind raising me. It’s so, so incredibly taxing on everyone. I’m so sorry for what you are going through. My nephew, for example, as Sensory processing disorder. We lost friends over that because they thought it was bad behavior/lazy parenting.”

“Just general understanding that 22Q is a complex disorder and really needs more and better research.”

“That the whole family is affected!!!! ?”

“22q required a team approach.  When doctors don’t talk to each other, it can hurt children.”

“People don’t ‘grow out of it.'”

“For parents of kids with 22q, there is an awesome community out there thanks to the internet. You aren’t alone.”

“I feel like I have to teach all school employees and doctors what 22q is. So many have never heard if it and it takes time out of every visit to explain what it is in general before you can even start talking about what your child is here.”

“There should be more research on adults. Every time my 45 year old husband has an issue – we have to wonder if it is due to 22q or age. I am more comfortable discussing my 11 yr old 22q’ers issues than my husband’s.”

“That we have to plan financially for how many years we’ll be able to work compared to others, as well as possibilities of going to college and things like that.”

“There needs to be more education for schools so parents don’t have to fight as hard for services their child needs. Also, how important it is that every teacher should modify their classrooms so students with 22q can actually achieve goals and whats expected of them, instead of being sent home for bad behavior or having things taken away or phone calls home.”

“I am so tired of teachers taking away the things I have set in place to help my grandson succeed, and I want them to stop blaming him by saying he is just being bad because he is having an over-stimulation meltdown or forcing him to work harder.”

“How varied the 22q diagnosis is. So many levels.”

“How much it hurts kids when they’re rejected by their peers because they are different in ways they can’t change.”

“Another thing I wish is that there was some way of explaining 22q to not just teachers who have a student with it, but to the peers in the classroom because others kiddos don’t understand or know unless they have or know someone who has 22q.”

“I’ve always had problems with following instructions with school and exams. But I’ve learned to deal with it and finally just graduated with a Masters Degree. SO its possible just a lot more work than most people.”

“That 22q isn’t just one syndrome… there is deletion, duplication, etc.”

“That it exists and just because they look fine doesn’t mean they don’t fight battles everyday.”

“Not everyone has the mental health aspect of 22q. My biggest frustration in dealing with doctors and med students/residents. They look up 22q and see the mental health aspect. While I’ve had issues, its always always been from other things going on, and clears up as I address hormones, electrolytes, or toxicity issues.”

“There are a lot of shadow syndromes, if you will, with this condition. I call them shadow syndromes, in that they are not full blown conditions, to require medical intervention or medications. But it is enough that adds more health issues and stress to the body. Like hormones being stressed, but not malfunctioning to the point they need medication.”

“I’d like more people to be aware of it. Most people I speak to don’t know what it is. A few may know it by one of its names. Then they want to what it is, like what the problems you can have with it. I had this discussion yesterday with a lady at my art group.”

“I have the same conversation with doctors and med students. But they usually take the time to look it up before they come in the room. So then I have to explain how it affects me. I should print off a list I had found once of a lot of the different issues and circle what I have. That way I don’t have to take the time to explain to them every single issue.”

“That despite my child’s struggles, his health issues, his speech problems, coordination issues, muscle weaknesses, and everything else, he still is a pretty normal 10 year old boy with an absolutely normal IQ. He is a bright boy and it hurts me severely when ignorant people look at him and assume he is incapable of mental processing.”

“How much it can create a group of people that feel like they don’t belong anywhere.”

“I’m smart, just don’t do well with the standard test taking. I never did the ACT and SAT tests. I only went on to community college though.”

“My child is a human being and not a chromosome disorder.”

“I wish the medical world would educate themselves and stop calling it DiGeorge (pet peeve of mine – I have doctor who corrects me all the time when I call it 22q) but mostly just know how it may affect almost all functions in some way and not just the heart or facial features.”

“That the learning disabilities don’t get better or go away.”

“The learning disability was tough and still is. I don’t see it getting worse (yet), but at the moment I’ve learned ways to cope with it based on what I’ve learned from my special ed teachers who were all great!”

“My daughter just graduated high school but struggles in all areas. She will attend our local community college. The college has a program for students with learning disabilities.”

“I mostly just wish people understand me. Sure I have my circle of friends and family I’m good around, but some times meeting new people (which I’m not shy about), they don’t understand completely about me and what I’ve been through. I mean I’ve had close to 30 surgeries since birth. I also wish that people that do know a little about it know that every person with 22q has a different form and different symptoms, but we basically all have the same syndrome. Everyone has different levels of it.”

“It takes a strong family to cope. And as parents need enough resources and support to stay sane for your 22qt especially when your away from family for surgeries i would not have made it through her 4 OHS without the support of the nurses and their compassion for the situation.”

“How it’s not my fault I have memory issues and my daily struggle with learning and remembering things.”

“That you can’t see it. People mistake our “typically functioning” children as normal kids. Until they behave in a way that others deem as inappropriate, but we understand to be appropriate for the Syndrome.”

“That not everyone who is diagnosed presents the same..they are all different and individual needs under a diagnosis.”

“I wish kids and adults knew that even though they maybe different they still are like other kids. I wish teachers understood that not all kids learn they same. I also wish people would stop staring and judging the parent when are kids have meltdowns in public.”

“What’s involved. Sometimes I have a hard time explaining “this is why this is this way….” and I often feel like people don’t understand it. Practitioners, and teachers always need a break down. They still leave questions, or are simply confused. I myself am learning new things about it everyday. I feel in our daughter’s case, the “autism spectrum” is specifically hard to understand. I never know if it’s the 22q or just her being her? You know what I mean?”

“That different is not bad, just different.”

“That you can communicate “normal”, look “normal” and still have disabilities. You have no idea how tired I am of defending my disabilities and that they are real!”

“That people need to be more compassionate, understanding, patient, and listen to our children carefully. They have hearts, feelings and are brilliant. They understand everything.”

“The fact that it does exist and that the kids with it are no less important than everyone else. That doctors are not always right, I was told my son wouldn’t walk till he was 3, he was walking before he was 2. It’s a long list of I wish etc.. But mostly wish it was talked about more than it is. I didn’t even know about it till my son was diagnosed.”

“Saying “oh but she looks normal” is crushing, and should never be said to parents.”

“I wish more general practitioners and doctors at local hospitals would stop saying, “Oh di-George I/we know about that.” It’s ok, when they haven’t. And run through a list of diagnosis before looking at what is associated with 22q.”

“I just wish the doctors knew more about 22q, seems like they don’t know anything about it.. its hard to find someone that knew about it.”

“Bringing more awareness to Public schools, no one had even heard of 22q 11.2 when my son enrolled into kindergarten. He is now going into the 4th grade now the entire school is aware!”

“I hate having to explain myself over and over to family or her doctor’s appointments people that haven’t seen her about her condition they always ask me what is DiGeorge like it’s like I’m always having to repeat myself all the time. It gets discouraging sometimes.”

What Say You?

What in this post resonates with you? Did we miss an important piece of information for the world about 22q?  Please share it in the comments!  I’d love to read your response to the all-important question: What’s the one thing you wish more people knew about 22q? I so appreciate your continued input on this topic because it helps to share the community and make so many people’s lives better. Looking forward to connecting with you in the comments below.