
Help for Jayden's Medical Expenses
Well, my family finds themselves in a crisis, several things have come together at the same time.
So many things in life we prepare and plan for. But sometimes our road takes a differant turn and we are left wondering.
At the age of 4, my son Jayden was diagnosed with Autism, and ADHD, and even though there is no other formal diagnosis, we speculate that there is something else as well, possibly bi-polar.
When we think about Mental Illness we often recall these heartwarming stories of the Autistic boy scoring a touch down. But our reality with mental illness, for both the affected and their caregivers is much more grave.
The reality is missing work because another daycare quits. The reality is having to move because there is another noise complaint.
You become isolated because social events are just too difficult to attend.
Caring for my sweet beautiful little boy has left me exhausted. Every simple task is difficult, and as his primery caregiver, I usually take the brunt. Everyday is a roller coaster of emotions, and Im always on standby, as sometimes Jayden becomes agressive and unpredictable. In this mix is my 16 month old baby whom I have to guard all day long. With Jayden, cheerful play can turn to danger fast. Usually simply by ignorance.
It is impossible to maintain a positive atmosphere in the home when one family member seems to always be raging and ready to blow up. We are often experiencing all these emotions along with Jayden.
When I reflect on the last few years it is clear to me that Jayden is becoming more intense, rather then growing out of it.
I, Jayden's mom, have a disability, and last year I relapsed.
For anyone interested, you can use google, hypophosphatasia, is what you would search for.
In short, due to a missing enzyme, I cant break down calcium, resulting in weak, brittle bones, and weakened muscle tissue.
My condition is degenerative, and realistically, I will be declining until I require the use of walking aids again.
(Sidenote, there is a treatment available at 3.1 million/year and is not funded by the Canadian Government)
This makes caring for a high needs child very challenging, some days nearly impossible.
In October of this year, Jayden was finally hospitalized after he made some graphic suicide threats at school.
When we took him into the emergency room, his behaviour was so psychotic that after administering high doses of sedetives, to no avail, a high acute response team was called in to transport him to a larger hospital at 3:00am. Jayden was kept for 7 days, then fast tracked to Vancouver, a high end psyche unit.
Because Jayden is so, so, young, and so not able to function on a daily basis, we were able to get to the front of the line for a 30 day psyciatric admission at Vancouver Childrens Hospital.
We have had several video conferences, and Vancouver has a team that is trained to work with children this young.
While Jayden will be in out-patient sessions, the parents too have sessions and support groups to attend. The goal will be to understand exactly what approach we need to take with Jayden and then learn those skills while under the guidance of the staff.
Dan will be required to take 30 unpaid days off work. We need him there to help care for Jayden and baby Ben in a group-living house. Jayden will likely be over stimulated and require extensive supervision, as will the baby. Also, Dan and I will need to swich off with the baby, and participate in sessions. Unless we both learn coping and parenting skills, there is no point to go.
Even though our housing in Vancouver will be free of charge, we still have to maintain our home and mortage here.
Also, if at any time any of us get a runy nose or cough we have to leave the house and rent a hotel...with two kids there are high chances.
We live on a small acerage with a few animals (milk goats, chickens, and meat rabbits) so need to cover the cost of people helping out with feedings.
We have to likly go back and forth a few times, and at an 8 hour drive each time, this will add up as well.
Its hard to ask for help, but we have all of our hope as a family on this treatment.
We are all desperate and drained, and we cant keep going like this anymore.
I have seen many people get help on go fund me ☺