First off, I really appreciate you getting this far. A lot has happened in this past week, and while we are still working things out and doing our research, I wanted to post an update on everything that has been going on with our little family.
I've already posted about the struggles Gage has had this past school year. He has had a very difficult time with his teacher this year, and paying attention to tasks at hand. It all started in October when we went to a parent teacher interview... which is now a "student led interview". Gage showed me his classroom and all his assignments he'd done so far in the school year. His teacher told me - very abruptly - that Gage never pays attention in class, doesn't work well in a group, goofs off constantly and doesn't follow directions. The entire time she told me this, Gage stood by and listened. I was upset by what I was told, and I told Gage when we got home that we needed him to try harder in school. He was upset about everything and cried. This was just the first incident. After this, I went on a rampage, doing everything in my power to make sure Gage was doing his "job" in class.
I took him to my family doctor who told me he didn't think Gage had ADHD (or any form thereof), and that we could take Gage to a specialist who would do a psycho-educational assessment. This assessment would cost us in the area of $2000, paid out of pocket. While some people may have done this and it worked for them, the more we talked about it the more I knew deep down that it wasn't going to give us any answers. I then talked to 3 Nephrologists at Sick Kids Hospital in Toronto, all of which worked tirelessly to save Gage's life months earlier. All 3 agreed that any medication or treatments Gage received while he was sick (his last dose of prednisone ended mid September, and this was October) would not still be in his system and would not be affecting him in the way his teacher mentions. One Nephrologist, our favourite doctor at Sick Kids, said that it didn't sound as though Gage's teacher was very sympathetic to all Gage went through.
We then decided to put Gage into counselling. After his ordeal, Gage would have nightmares about getting sick again and ending back in the hospital, and we were concerned that maybe some residual emotions were inhibiting Gage from working well in class. We talked about everything a lot, and made sure he knew that the emotions he was feeling were okay to feel and that it's important to talk about our feelings. His therapist after 10 sessions told me that he has a very mature level of understanding of life and death, far greater than other kids his age. She thought he had a good grasp on the events of what happened to him, and that he didn't really need to be in therapy to work things out further.
At this point I met with Gage's teacher and vice principal, and I mentioned ALL these things we were doing to help Gage. We asked if extra school work could be sent home, and this was denied on the grounds of "it won't be fair to the other kids". We asked if he could stay in for recess and we got shoulder shrugs. The most we got out of the entire school system was that his teacher would put coloured circles in Gage's agenda each day to indicate how his behavior had been that day - red for "bad", yellow for "so-so", green for "good".
Oh yes, and the psycho-educational assessment that was $2000 out of pocket was brought up again, and we refused it. Again.
We continued to support Gage for a few more months before we got more notes home indicating that he was still struggling. I sent a scathing email to the vice principal about all these things we were doing to help Gage - and what were the staff at her school going to do?!
This brought on a meeting. With Gage this time, and my husband (Stuart). We got 15 minutes of his teachers time, and the vice principal. 15 minutes of the vice principal asking Gage random questions, none of which he answered honestly because he was uncomfortable being put on the spot. He told us after school that day that when his principal asked him in front of us all if he likes his teacher, he lied because he didn't want to get in trouble. That he doesn't like his teacher, and it's only because she clearly doesn't like him. What do you say to that? What on earth do you say to your 8 year old who tells you "I know my teacher doesn't like me"?!?
We were disappointed with Gage's teacher and the staff at the school at this point. From that point on, when we got notes home, text messages or phone calls about how Gage wasn't doing whatever it was he was supposed to be doing, we said "we've done everything to support Gage and help him do well in school. We are open to your suggestions and help, and look forward to your ideas". Nothing. We just got a lot of shoulder shrugs.
This past week, Gage's teacher and I were texting back and forth about how he once again, wasn't doing his work, blah blah blah, when she actually said to me "He's just lazy".
He's just lazy. My 8 year old. Lazy. At 8 years old.
No.
The Simcoe County School board has failed Gage. It sat by, waiting for Gage to change and adjust to their system. He is the square peg, and they expect him to fit in the round hole. We are disgusted and angry.
While we've tried everything we can think of - we've bribed Gage into doing better, taken away all electronics, threatened him, talked until we are blue in the face. We thought maybe it was because he was bored, and maybe that is part of it, but we've seen his inability to focus even when he's doing things he loves - like Ball Hockey.
All these months, I've continuously come around on numerous occasions that something else is going on with Gage, deep down. While his blood work all has come back clean and within normal levels, and despite his Nephrologist team saying otherwise, I've always felt as thought the high dose of medication Gage was on to calm his immune system down, combined with the dialysis he received, has created an imbalance in his gut.
There is a strong connection between gut health and mental health, reproductive health, auto-immune issues, behavioral issues, and many more. We've previously played around with Gage's diet - which was the first thing we tried, and noticed a difference in Gage's behavior after 2 weeks of being gluten free. We didn't stick to this long term, because at the time he was the only one of the four of us who was gluten free, and this was hard to meal plan and prep for, plus gluten free products are expensive.
I started reading articles and studies about the gut health connection and became even more convinced that we are heading in the right direction. We are going to start slowly, and begin cutting out inflammatory foods from our diets. We decided to do this by starting with an elimination diet - and we are all on board to do this. Our Finnigan has some allergies that tend to come out of nowhere, so we feel as though he will benefit from this as well. We are going to start by eliminating gluten, dairy, eggs, refined sugar and citrus. These are common allergens, and with the exception of citrus, have a highly inflammatory response in the body. By taking these triggers out, we are hoping to calm Gage's gut imbalance so we can begin to repair any damage.
We are also going to be taking Gage to a Functional Medicine practitioner with an MD. We found one within 2 hours of us, and we felt this was the best practitioner to go to for Gage. I feel as though modern medicine certainly has it's place - it saved Gage's life. But we've hit a crossroads. I know something is going on with Gage deep down, and there is nothing modern medicine can be do about it. I know this, because I went to 4 medical experts for help. I know going to a naturopath is also not what we need, because in my experience they tend to be financially driven and don't have access to the testing we need for Gage. We need someone who sits in the middle - who looks at the body as a whole, and not just different organs.
The testing we are looking at doing is to see how Gage's methylation is. What is methylation? "Methylation is a key biochemical process that is essential for the proper function of almost all of your body’s systems. It occurs billions of times every second; it helps repair your DNA on a daily basis; it controls homocysteine (an unhealthy compound that can damage blood vessels); it helps recycle molecules needed for detoxification; and it helps maintain mood and keep inflammation in check." (Click here to read more and for the source of this definition. This is a really great "starter" article).
There are specific tests to test your methylation process, and once we know how Gage's body processes methlyation, we will have a better idea on how to help him heal. Otherwise we would be buying supplements that could just end up making him worse and also be a giant waste of money.
The Functional Medicine MD we found is something we have to pay for out of pocket, so we are going to start with the elimination diet first and work out the details of taking Gage to his first appointment for testing.
We also know that Gage's self-esteem and confidence has suffered greatly this school year, and we are hoping to work hard this summer to help him improve this. I'll be posting a lot more about our journey with this, including the steps we are taking to get us on the road to healing. Our goal is to work hard this summer getting Gage a clean slate and boosting his confidence so that September he can start grade 4 with a clean slate. This process is going to be slow, but we are prepared to be patient and take things one step at a time.
As parents, Stuart and I have also learned a lot about how we want to parent our children. We now know what we will tolerate from Gage's teachers and what we will not. One thing is clear though: We will never allow another teacher to talk about our child that way his teacher has this year. We will go above the heads of the local school staff if need be - but they will not make my child feel like shit again. A teacher's job is to help children learn, and Gage's teacher this year did not do her job.
Thanks so much for reading, and please stay tuned for more details about the steps we are taking to get Gage on the road to recovery!
Gage, with his little brother and cousin.
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