Bella was almost 2 when she fully started to formed her thoughts and developed sentences. Bella just one set of tubes in her ears.
As for myself to show how no two people are treated the same with this genetic disorder even with those of us who have multiple people in it with 22q I did have tubes in my ears every year growing up until I was 19 in and out getting them done.
I was talking on time and nothing alerted doctors to test me for 22q until my brother and sister got diagnosed.
Now looking back years later I learned that I also never shut up perhaps that's why I advocate. I have to look out for the voiceless. I advocate for those who can not speak or know how to form their thoughts.
I advocate for Bella as she continued speech therapy every Tuesday even though teachers would say she's not at school and is missing out on so much while she isn't at school.
Bella was doing multiple therapy outside of school because those services are not offered that would meet the needs Bella has such as someone to work one on one with her to organize her thoughts and her speech while she writes in fact she was dismissed as not needing any interventions while at school. When it comes to being in school Bella is mainstreem with an IEP with a special ed teacher that she get's pulled in and out for gets extra support but is only in level one. She is not full on level 2 but get's some level 2 and 3 services. Bella Iep states her accommodations as as needed and interventions as needed. Which is fine by me personally I would rather experts be treating Bella medically and those medically needed services she is getting out side of the school is infact helping her inside of school and no one else but us are aware. I don't have it in me to battle every single battle. Sometimes just need to go with the flow and other times those times you save your energy for the bigger battles. We have been lucky most teachers are understanding and supportive of Bella. Bella has been attending the same exact school since Kindergarten. I am often at Wallmart, Target, Meijers, Culvers and such places locally where I get a hello and you have to be Bella's mom and Bella will be off doing something with my husband. Small towns gotta love them and the huge support we usually do get. we are isolated and not really apart of any parent group within the community we are apart of some community outside of the small town we live in. Most are great support groups. I can call on a handful of experts and ask for advice.
When it comes to the extra support Bela needs we had to look outside of the public school setting for seech help ot and pt help and psychology and we finally are on an amazing path of treatment for her. In-fact Bella has been in speech therapy every single Tuesday until just this past few months Oh how I regret every minute she wont shut up she even talks in her sleep. We have had fun conversations. Her thoughts are organized and she can out debate any of us! lol she 11 I fear anyone who get's in her path and try's to tell her otherwise when she is a grown adult and people underestimate her ablity's.
I'm so proud of the person she has grown into and is becoming.
Bella has worked hard so hard under pressure catching up with home work while missing school NOT being in classroom on Tuesdays and missing out on Fun actives like art projects the other kids get to do and music class. Bella was working hard on speech, Psychical therapy, Ot and psychology after having a neuropsychological evaluation.
I'm not going to go out of my way to remind others why we have these appointments. Why she misses so much school. 25 plus absents and she only misses school's on days when she is ill another thing she has is mild low grade temps with fevers. Bella also gets' panic attacks when going over the home work.
The ot was amazing and has helped us come up with a game plan and we are working on some organizational skills and so much more that it would take me days to write it all out. This is why Bella appears to be the typical advance developed child she seems to appear to be. I bust my behind while my husband is working. It is all on me. I do not get respite or aid and I have to battle the school front and keep that calm and peaceful while she misses so much school Just this past week Bella was upset that she missed out on a project for mothers day but Bella said don't worry dad and I have you covered mom.
Do not look on Amazon as she yaked my phone out of my hand and ran way like a sheepish imp. So for those moms who have to take their kids to appointments week after week multiple appointments because the medical place hours conflict with the school hours.
Don't worry I got get ya! You are not alone. Sometimes we miss the fun stuff to get finished the hard challenges we have been faced while showing a smile and acting like all is okay. Like we don't hate being placed the middle between the educational and medical battle while no one else gives a crap! Sometimes profanity's flair tears happen and drinking whine in the bathroom closet after the kid is in bed is a must. I get it! Do you? It's one thing to read that 22q is a total body disorder that is a deletion on the 22ed chromosome but it's an entire different thing to live it day in and day out. I don't want my child to miss out on music or art class but I also don't want my child to medically suffer because she has to attend school either. Home school was a suggestion but that's so they can keep the achieving school kids in the class room and not overwhilmed the rest of the world while we sit in a closet with a glass of red wine while everyone is sound to sleep including the husband. Our social live's get placed on hold our world is upside down unable to work and look for jobs because we have to attend appoitment's This post is for all of those moms out there who get it!
I wrote this as a heartfelt momma shout out to all who truly understand what it takes to raise someone so special.