Thread by @ShantelSherwood

You can clearly see my once chunky baby and my very tiny 3 year old. This was the same day I was told that our pediatrician was going to try to fast track his long wait to be seen at the Glenrose for Autism query and also threats of a G-tube. Because he had lost 10 pounds.

I was in some of the worst pain ever as a mom because I didn't have answers for my child. Our EI team through Alberta Health Services said we can help, we will help. And they tried so hard. And we made some small gains. Or at least held off the G-tube. Trick? Butter on everything

We loved our OT and are still grateful. And schools are now having these precious people pulled but I digress. Wait lists... wait lists when you have a child in need. This still took until the end of Nov. So still 10 months from referal to the Glenrose.

Autism it was. Thanks Dr.H. and then we get put on a wait for the feeding clinic there. Should note at this time my son had also been waiting a year for a neurologist to see him. How long for the feeding clinic? It took until end of Sept. And my son was struggling bad.

It also took until Sept to get FSCD in and he had aged out of IL but they still sent OT as he was finally doing a bit better. He starts school Pre-K PUF. We finally get a spot for feeding clinic I had to choose that or saying goodbye to my Nanna. I hope she understood...

They see nothing major... some red throat from all his throwing up but likely stress they say and the school OT who is with us says this is common. I trust her. We leave. Our IL OT is phased out and my son starts to lose weight again. Pediatrician says ok something is wrong.

Immunologist is sent emergency referral this is Nov. We don't hear back till Jan. February we go in. He says his esophagus is on fire something bad is happening but he needs a scope. He doesn't think anxiety. See gastro specialist in April. Book scope for June. All these waits.

Meanwhile every single month I was also battling school. Because he was coming home and throwing up often. They had also lost my son who was pre verbal and made excuses. They had left him sitting in poopy diapers and made it his fault. My barely 4 year old pre verbal autistic son

Literally everything was a fight for them with him and I was an absolute wreck over trying to manage his health and the school. The neglect that was my sons school experience was severe enough FSCD gave me a school liason to help me help him.

He lost the 10 pounds we gained only now taller we were scared. When teachers and OT were asked how feeding work was going and what my concerns were I was told they would kill to lose 10 pounds so fast and they saw no issue. I needed calorie counts and couldn't get them.

In June we went in for the biopsy and days after I received a call from social services about my son. The school had called and claimed unnecessary medical intervention. Thanks to my home team and pediatrician it was shut down in hours. But I was left shaken and hurt.

1 week later results are in. It's celiac disease. 500 count. He was a sick little boy. And it took how long to get those answers? Almost 2 years!!! And the neurologist we just saw in February that was 3.5 years. This is my health care experience this is my education experience.

I did a full investigation into the steps taken for the social service call. No appropriate steps were taken. It was a huge thing and I'm told the teacher and Vice Principal involved were reprimanded. This year instead of staying angry I decided to advocate.

And find those in the system who do want better for kids like mine. Who wouldn't never dream of doing what was done to my son. To make people aware that to speed anything up we have already often been paying private and nobody is talking about this.

I'm still angry but it's at a broken system. Especially for kids with disabilities. They are not yours to forget. This is my why. Forgive typos or grammar errors. But please get the message.
#abed #AbLeg #abpoli #HoldMyHandAb