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One of the questions I often am asked the most is now that I’m 35 and I’m raising Bella who is 11 which we all “appear not like 22q typical children” are we doing okay for the most part? depends on who ask I say sure. Why because they only want to hear their truth. They want to understand 22q the struggles and setbacks.
The failures I’ve had had with health such as gasteroparies dosen’t seem to bat an eye lash with some people after they ask me. They don’t know the pain I have daily the throwing up the faiting feeling the exhausted all the time the frustrations of being isaolated and not supported by a community that says they are suppose to support those of us with 22q.. The majory of people are only intereted in how well Bella has turned out and basically if I can function as a parent because I have 22q. Not everyone has these questions mind you most are understanding the parents who struggle with dealing with the disorder and it’s many complicated symptoms as an adult I also have those symptoms. I learned to adapt and adjust and manage own my own because I didn’t have any other choice.
Over the years of blogging I have shared content about Bella and my journey with doctors but now we just deal with every week visits to the pt and psychologist. those are soon coming to an end as well. We don’t really need much info or help from U of M either there is one more final visit and it’s either surgery or it’s not. Bella has been seeing the clinical team to help us ngativate her issues basically just watching and monitoring the success and struggles we have had since Bella was 5 years old. Bella being 11 is now the time we start ending things medical related because things are going well. Sometimes we take 3 steps forward and 3 steps back and we have a great team from her doctors office to the school front. Bella is mainstreem with an Iep and doing well.
Bella struggles with adhd isuses and social issues of course but Bella is in the 5th grade and is making the transition to middle school. We are not in crisis but there are struggles and challanges and Bella struggles with leg pains while I struggle with pains associated with gasteroparies. I’m able to take care of me because I have a supportive husband and a handful of friends I can count on.
some of my friends have asked what are these coping skills I talk about when it comes to dealing with my aniexity and panic attacks.
The first step is you gotta have your mental break down where you reach rock bottom.
I had to build myself up after being hospitalized struggling with the feeling like poop most days after Bella was born because of others online who bullied me and picked on me. There are so many others who think I don’t have 22q because I haven’t shoved my fish test in their faces (yet) I have a family history of 22q My father has it, 3 siblings have it, one passed away when he was 6. My own daughter has it. I know 22q from so many factors that are apart of it that the different perspectives I have about 22q. I have learns the tricks and tips only because I have had to. I worked hard and continure to always grow as a person.
I don’t allow 22q to get in the way in fact we didn’t know I had it until I was 24. I’m 35 now have had lot’s of mentoring and training from different advocates as well as author mentors. I’m working on a book but it didn’t come easy not one bit.
The tricks and tips I find that are most usefull are listed below. I hope this helps you feel not alone.
use mindfulness and meditations. I find comfort in spiritual practices. I have used eft tapping when the going is tough I have syncope but been great about no passing out since my daughter was 2 she is 11 now. Back when she was 2 I had a meltdown from all of the online bullying and others claiming things about me ect. I learn boundaries and coping method. I have to say eft helps and meditatiom. I also write and blog on my website but haven't had much to blog about latley life is incredible right now. My ptsd makes me on hyper alert so I use theraphy sessions as a monthly tune up to check in and to prevent relapses as I have a mini me with the same disorder and she has to learn by my example
Sometimes you get the hope that your going to make it and succeed and then others come along and stab you in the back. The online bullies remember them. The main lessons I have learned is,,,
When others attempt to try and crush your dreams for their own ego just brush it off and keep moving forward act professional and keep chasing after your dreams and goals. More to come in the New Year.
The systems are in place and I’m so glad you guys are sticking around I did take a social media break and worked on my boundaries if you want help with anything 22q related, a pm message or questions please be a subscriber and follow the fan page. Then I can know your truly interested and like what I share.
Thanks so much for all of the support.
Both Bella and I have 22q both of us have ADHD there is very limited resources and help because we are not on spectrum.
My goal for the new year is to bring more awareness in the new year of what life is like with having to attend weekly therapy sessions and the struggle of keeping up with being mainstream with an IEP in the 5th grade in public school.
Organization is a challenge with thoughts and things
Having it as an adult is exhausting the sticky notes and alarms on my phone for reminders.
The distractions the overwhelm feeling over multiple steps.
Trying to remember to maintain friendships while raising a child with the same issues. Making time for romance and quality time with spouse comes natal and spontaneous for those with out adhd.
For people like myself these things have to be plan out.
Routines structures help so does monthly tune ups with my own therapist so I don't relapse.
10 years and going strong.
Weekly recovery group at church had reminded me of how far along our family has grown.
It not easy it got easier because I didn't sulk and whine about it I buckled up buttercup and handled myself and my issues.
My mini me watching me was my motivator
The part of my book I am writing is of my recovery the journey and the personal first hand experiences the struggle of the others online I took a long social media break and time away from blogging. With the support of the recovery group I am inspired to keep writing. I have a different perspective my truth is my journey.
I am no longer others target. I've learn to let toxic people go.
I am thankful for the support of friends and loyal readers.
My blog since 2014 had grown internationally and accomplish so much from being a parent advocate to a champion of hope.
I look forward to what the new year is going to bring
This is the week of SPED (Special Education), Autism, Dyslexia, and ADHD (Attention Deficit Hyperactivity Disorder) awareness. For all the children who struggle every day to succeed in a world that does not recognize their gifts and talents, and for those who are walking beside them, please let this be a gentle reminder to be kind and accepting of ALL people. Recognize that the "playing field" is not always a level surface. Children who learn differently are not weird. They are merely gifted in ways that our society does not value. Yet they want what everyone else wants: To be accepted.
If you choose, please copy and paste this in honor of all children who are deemed "different". Our world would be far less beautiful without them.
https://www.mommiesquietplace.com still going strong
Some of you have asked what is a typical week night routine in our home looks like.
Structure and routines help typical children thrive but when your child has adhd both physical and emotional adhd it helps to have consistent routines.
Here is a copy of our routines chart.
Mind you Bella is 11 but still needs routine changes set her world off in a huge way so we created a chart a while back using a ticket time reward system for positives reinforcement. A bucket filled with goodies for her to keep on with organizational skills and time managements skills.
Creating a reward at the end of the week helps with intrinsic values.
Develops a strong work ethics
Adhd both physical and emotional its not only about pills but skills to that help.
Medication is only half of the battle.
I will not list her meds here as I don't want a bunch of people going out getting meds their children might not need.
However they have helped and even teachers notice a difference with Bella on meds vs without meds.
The chart helps make Bella more in control of her actions and helps remind her with out my having to prompt her every 5 minutes.
I will share this up on the blog too.
For more check out our website filled with tips and tricks we have used from my first hand personal experience living with 22q11.2 deletion syndrome.
A fun chart she colored helped make her take ownership of this routine empowers her to follow the steps and if she argues we have a list of house rules we refer to as a reminder. Cutting down on the struggles and makes life easier. So many parents I have mentored have asked me to share what we use as routines. I hope this helps
Also this allows more time for hubby and I to connect each night even if sometimes I fall a sleep on the couch watching tv
We also attend physical theraphy sessions to help with her leg pains that keep her up at night from the MILD CP and we have psychology sessions to help. However over the past two months we have been keeping up with Bella’s school work and she’s had a swimming lesson in there that was a week long. Before that Bella was feeling runed down and had a cold in Sept. There are always going to be changes to routines we can’t do the same thing day in and day out but typically this is our normal routine unless we have a outting such as going to the movies or out to eat for dinner as a family
I hope this has helped as some of you have asked to see a routine chart that we use.