Bella's IEP Journey- Confessions of a 22q mom
I wanted to share some helpful tips if you are just starting the process of getting your child’s first IEP together or if you are like me with a child transition from elementary school to middle school soon as June rolls around.
As a mother who’s child has been on an IEP since preschool. Bella did special education program called early on which is early intervention for kids who have disabilities and challenges before she started preschool. Infact before preschool Bella was at Kenosha a special need school in Grand Rapids Michigan. Bella didn’t need all of the attention and support services some of the kid’s had needed because Bella has a unique case she has a rare genetic Chromosomal disorder called 22q11.2 deletion syndrome. Outwordly Bella appears like any other child inwordly Bella struggles with simular issues as some kids who have down syndrome right down to the hypresnality of her vocal speech.
At the time Bella was younger than 5 years old and who in their right mind would see any difference between a typical active child who’s creative and stubborn to any other atypical children. Moving on up though middle school has been filled with many highs and many lows. I’m emotional just thinking of every single mile stone my child has achieved over the last few years and I’m having a proud momma moment that I didn’t have a mental break down oh right I did. That’s because I was over whilmed I didn’t know what I was doing and I had handled iep with my husband before with 3 others while they were much younger. Why couldn’t I face the challanges my own child had to face with out getting huffy or teary eyed and wondering why wont they just read her neuro eval or follow the iep before the iep meeting in November. That’s the time frame of when it’s what I call IEP seasons.
Our first step was to get a plan of care set up with her doctor so I knew what to bring to the school when it came to parent concerns. The next was to figure out the laws the rules and the lay of the land which means reading up until 3 am on what Dr google said I should do and attend multiple and I do mean multiple doctor visits. We average 2-5 visits with doctors per month sometimes. sometimes it’s nice and spaced out and put into a neat little time slot that is conviently outside of school hours and others while that’s more often the case because the specialist that know what they are doing for people who have rare genetic disorders are only open to book dr visits during school hours and almost no school hours.
The intial step was a visit with Bella’s primary dr to get referered to a neuro evaluation. Then we started our path of treatment the plan of action the thing that will forever give us a guided tour into how our child’s mind is mapped out and functions.
We started a neuro psych assessment when Bella was only 5 years old from Mary Free bed when she was just entering Kindergarten we knew she needed help but that was our road map. The first major step the first hurdle the first scary challenge of having a reason for a 5 year old to get psych testing done and she is officially diagnosed with physical adhd both emotional and physical adhd takes its toll on a person mind you don’t ever physically see that on Bella face when you look at her. We entered into the world of invisable disablitys. Unlike down syndrome but much like down syndrome on the inside just not what it appeared to be on the outside. Bella had to be put on medications to help control impulses, tapping excessivly and other quirky behaviors that disrupted learning such as spacing out and the many scary spells Bella used to have like fainting first was tempature disregulation syndrome which still effect her but not as much now we have things in place and a plan of action the major spells were vego vassel syncope not seizures. Imigine getting frustrated because your child is passing out in class and teachers are upset with her for doing so because they think we kept her up all night and she was simply a child getting zero sleep at home at night. Bella also has a sleep wake disorder in which she walks and talks in her sleep.
We had a meeting with the school before the one she is currently at now and we set things up in a nice bow with accomdiations that meet Bella where Bella was at not where we wanted her to be at because she is a year develomentally behind her peer and that is why we started Bella late in a young fives program before we placed her in Kindergarden. Before Kindergarden Bella had 2 schools already.
Some examples of accomdations for Bella was
Bella had to have these bouncy cords on the end of her chair and the ever popular wiggle seats. Bella also had to set up closer to the teacher so she can zero in on what was in front and not glare off out the window tapping and bouncing. Her poor kindergarden teacher didn’t get the benefit of Bella’s current working medications infact we are in 5th grade and it was only two years ago Bella was put on medication that actually helped her.
Bella was on kepra for seizures or so we thought were seizures and it was flavored with liquid stuff which stained her teeth which we ended up having to get Bella crowns to fix her teeth. Now Bella has a beautiful smile and sees one of the best dentist around 22q and kids with dental issues is no joke. Or first dentist was a night mare a monster really who had hold her down screaming for me when it came time to do the actual work. This place now that we see is like night and day difference and that’s what matters between the doctors and people who have cared for children like bella and the ones who do not care and just see kids for the money. you can really tell the difference. I have a list of amazing caring drs who I can suggest if you are in the sw Michigan area who treat kids with 22q and take medicade. I know like a needle in a hay stack. We have to often travel to Kalamazo, Grand Rapids and Ann Arbor just for doctors who know what 22q Digeorge is. Bella has been in er visits before where the er dr treating Bella or even myself was like what’s 22q? all I can say is teachers and principals and other educational staff even if speech and ot and pt are at school often have no clue what 22q is but know what down syndrome is. Its’ a rare disorder that’s common yet not heard of because people fear the unknown and don’t often get tested until later.
Fast forward a few years and we got Bella some test for the seizures which was not infact seizures but behavioral issues but not in the she’s not listening naughty correct this type of behavior. Bella struggles and has a hard time with sensory processing, lights sounds and sometimes even touches. Clothing has to be just so as does haircut and style. We made the mistake of allowing her hair to grow super long and that entered up just a matted hot mess. Body hygiene was an issue with bed wetting at night and yes she still does it it’s not something she can control but sometimes kids can be so mean and nasty about it when they want to pick on her about anything that’s or her eye glasses are their go too. I’m not staying my kid is perfect she has had her share of telling other kids what for as well. I’m glad for one thing the kids she goes to school with are accepting of her even if she isn’t always invited to their social events. Birthdays are hard for her focusing on more than own or two people at a time is a challenge and Bella gets that from me. I think. I can’t seem to keep up with friends if they aren’t right in my face it not that I don’t care and think about most of you it’s just there is so much going on in our world with my own health issues the gerd flair ups from gasteroparises and the throwing up and passing out spells I used to have. I have learned to rest when I can and breathe and relax a lot more. Years of therapy sessions have helped me cope with my own adhd and PTSD. I often wonder if I’m ever good enough of a mother and wife and friend. I know I fall short I can’t imagine what it must feel like for a child Bella age to try and make friends in today’s digital world.
We also over come so many challenges as a family from the older three moving in and out and their teen years mostly all moving in at 16 and out by graduation and visiting or bouncing back in forth in short burst of time. Our place has always been that safe routine structure has helped my being here at home seem to help so my husband could work while I deal with the house and kid stuff. Some can call that selfish and such but that’s what our family had to do. We learn to be frugal and live within our means now we no longer qualify for SSI and are making it without any form of assistance and it feels great just as much as it scares me a little.
After Kenosha we moved into a small town in Martin our world her world turned upside down while we lived in a pastors camper and our income dropped our world upside down and we had to make ends meet on only Bella’s ssi check less than 500 a month as we were living with pastor from church in a camper. I don’t suggest it or recommend it. It was the hardest year or life. Bella had to have test done she was still having mystery temps and seizures we now call passing out spells. Bella missed many days of school infact more days missed of school then she attended. Bella has always had doctors’ visits, Speech, OT Pt and psychology for leg pains associated with cerebral palsy a mild form of cp leg spasms and tight sore muscles.
Bella started young 5s without us being aware of all of the mystery illness that would come about and face us with. Bella and I both have 22q I knew what to watch for but most of the major stuff just simply never happen thankfully. We had to do sleep study’s, seizure testing’s, EEGs and monitor her heart and calcium levels often all while keeping accordance with the law and keeping her in the public school system .
My child has graduated Speech therapy since, but that’s not all she has to struggle with social issues peer pressure it’s more of a challenge for her to manage on her own without an aid but getting her an aid would only make her an easy target to be even more isolated then she already is. Sure kids like her and are kind to her most days but sometimes kids don’t get along and fight and pick on each other. My daughter had her first fight this year in 5th grade and it has taken me back a bit. I’m simply thrilled about some of it no not the words both of the girls of said and the actions they have chosen to stay to one another. I’m grateful she has a friend or two who care enough about her to get that pissed off at each other over whose friends with who. I don’t encourage any of it both girls had such a hard time dealing with the issues the next day but they talked it out and seem to have worked it out and are friendly with one another again
. A hard lesson we all have to learn. Not everyone will like us or cheer us on all the time. For starters this year we are entering the year of those crowns she had on come out falling out all over the place my kid is. Perfect smile is so worth all of the dental visits. Hey doc if your reading this. Bella also has been picked on about her glasses the kids seem to be jealous of how cool and fancy they are. The extra cost of them durable and scratch proof and such things that medicated won’t cover we get added on and pay out of pocket.
I have had a ton of help and an amazing support staff at Bella’s school as well as from the doctor’s office to the case manager that helps work with us everyone helps pitches in they say it takes a village to raise a child and I sure do love my village. When Bella was younger I attend mops groups for my mental sanity staying at home as a stay at home mom is daunting chore that leaves you feeling with same thing different day from one form to the next you never know which routine will throw your world out of place and off balance.
I am on the national parent to parent board that mentors other parents but before that I had my very own advocate who helped basically point me to website’s like rights law and Michigan protection advocate and Michigan family voices and the ark and ask.
All wonderful advocacy places Then Adam and I both spent time sitting on the board for parent to parent a none profit that’s where I meet some of my favorite special needs moms the moms who had face their own fears and challenges and some who motivate and encourage me to keep blogging and sharing my story even if it felt like no one would want to hear about a mom who has 22q who is also raising a child with 22q. I understand the frustrations and challenges from all kinds of perspectives. We even ran a rare genetics support group and connected with the rare voices community.
So if I can handle an Iep the processes the challenges the fears the frustrations after my first argument with the school got my own advocate and learn the laws I don’t sweat the small stuff like my kid missing school because I provide the letters, the doctors notes and all of the extra stuff requested from the school. I jump through hoops so my daughter can be inclusive and included and accepted
It’s not always easy but we have learn how to cope with the challenges husband and wife and even the other kids face having a child who needs so much attention from me.
Then there is the now you see today I don’t need to blog much because we made it we are okay from our home environment which at one point Adam and I almost never made it to tomorrow we celebrate our 13 year wedding anniversary. There is not many couples who don’t have 22q who can say they have that. Or many who have 22q who can say they raised a child but we each have our own take on how to handle life and what comes our way.
I’m looking forward to transiting Bella to Middle school I’m not looking forward to not having bus to and from school but the bus is one of those things that overwhelmed Bella. Some times with the loud sounds o it might be a good thing.
over all I’m here to say I lived through the Iep process and you will too
You will have to do a lot of waiting like this in order to make it through one Iep after the next but it’s really not that difficult when you have great people all around working hard to support and encourage your child.
Thanks to my support people doctors teachers and nurses who have all been there cheering Bella and listening to my rambling blog post. This kid right here is going into the 6th grade next year. We are half way finished with 5th grade and have the least amount of absences ever oh and those who have asked Bella scored an A- on her hatchet project
If you ever need to figure out where to go out what to do when it comes to learning the laws and how best to help your child accommodations at school
These are some of the great sites I suggest
The two of the best there are so many more sites out there but these two are services I have used and used to this day.
Until next time friends keep pressing forward the journey never ends.
Oh and on a side note I finally finished my book. YAY!
I want to know how many doctors does your kid go to weekly? Monthy? yearly? does your child home school or is your child public schooled?
Bella graduated Ot, and speech services but still attends weekly sessions of psychology for adhd and coping skills for issues she has with school and her illness as well as some day to day life skills, Bella also sees a physical therapist who helps loosen her legs and help prevent sever leg spasms from having MIld cp from complicaitons at birth as I also have 22q.
We do face our challanges one of them is I’m 35 and can’t drive do to passing out spells I used to have but I am working on skills to over come fears I have around driving on the high way. My daughter and I use medicade transportation with her medicade plan. It’s a secondary insurance on top of my husbands work insurance. Bella is fully covered for most services but ssi still says she is no longer disabled because she can now speak. In order for my child to constinue to get ssi which is only 100 a month I would have to appeal and fight for her right to have it. I choose not to fight this time around. We are stable and in a good place no need to rock the boat any futher we have other battles we are fighting and facing daily.
My advice to you if you are starting out look at the websites for your state laws learn your rights and stick to your gut when anything is not going right. You know your child best not some expert with letters behind their name that sees your child for 20 minutes a few times a year.
Most of all enjoy your journey. They are not young for ever and you will resent those moments you spent reserching all you can instead of creating memories and taking more photos of the fun stuff in life and kicking life in the butt.
That’s my advice be kind and kick life in the butt when you have to and don’t care about the parents who judge you After all they are not paying for your child’s medical bills or your rent and food are they?
Until next time choose kindness.