It's pretty amazing how easy it is to talk about Zach. There is a lot of positive feelings even pride when it comes to all of his accomplishments. I certainly don't take all of the credit because it really wasn't all my doing. We've had so many great people, so many talented people work with Zach.
Now Jack is a different case. Jack's life has been filled with hardship, sleep deprivation and pain.
This is the difference between having a child with a diagnosis and a child without a diagnosis. Yes Jack has funding for school but we have so many more issues with him. The number of tantrums we have a day with him is unbelievable.
I think for you to truly understand the difficulty with him I need to back up to the early days. From the time Jack was a week old he would wake up frequently. He was awake hourly and seemed hungry. The only way I could get him to sleep was upright snuggling on my chest. Not a very restful sleep! What seemed as a growth spurt at three weeks old lingered for months and months.
When Jack was less than two weeks old Zach started preschool with the boys with autism. And of course that school wasn't in our neighborhood. (That seems like a joke because there is nothing in our neighborhood because of the poor city planning in Calgary.)
I had to be out the door with three children by 8:15am. At the time we only had an accord and thankfully we managed to put three kids in car seats in the back. Maddie was pretty small so we made a box to fit in between Jack and Maddie's seats so Maddie couldn't touch Jack's eyes. Jack was truly a Jack in the box.
Since the school was 45 minutes away from home, we would go to open gyms and friend's houses after dropping Zach off. Great for social interaction but the sleep deprivation took it's toll. Jack never had the opportunity to nap in his crib and momma couldn't ever nap in the morning while Jack was napping because we had to be out or I was driving. Dark difficult days.
I don't know if people can truly identify with that sleep deprivation unless you yourself have lived it. Just imagine yourself being awakened hourly? I remember at that time just longing for two to three hour stretches of sleep. You know you are bad off when you would just love to sleep for two or even better three hour stretches.
The afternoon after we returned home from preschool were not our own, Zach had three and a half hours of therapy. When Jack was smaller I managed to get Jack to sleep for naps and would be able to catch a nap but that was short-lived. Maddie would play on her own and her room. Once Jack outgrew two naps that ended.
Things didn't really improve when Jack turned four months. Just imagine having your baby screaming for hours and scratching but feel completely helpless because you don't know what is ailing them. What a helpless feeling.
We started to get some answers when Jack turned six months. At this time, Jack's skin looked absolutely awful. He had a terrible case of eczema. He would scratch and make him bleed. We attempted to introduce solids but he just screamed in agony. Was he allergic to food? It sure seemed like it. After I introduced oatmeal, Jack looked like he had chicken pox. We had a blood test that tested for allergies. He was allergic to milk and milk products, oats, peanuts, eggs-whites and yolk, strawberries, peanuts, raspberries, blueberries and rye. Wow! That is why eliminating milk didn't eliminate the problem.
The health concerns continued. He had a seizure at eight months. Jack was very pale during the seizure which isn't typical of seizures so we also went to have his heart checked. His ECG was abnormal so we got a referral to see a cardiologist and had an echocardiogram. Thankfully the abnormal
heart tracing was cleared even though two separate tracings were done.
April of that year we saw a cardiologist, neurologist, dermatologist, gastrointestinal doctor, allergist and pediatrician. We found out that Jack had reflux so we started him on medication. We also started him on creams for his itchy skin and daily gave him benadryl so we could both sleep.
To complicate things, Dave was diagnosed with type 2 diabetes. What else? Dave's blood sugar was greater than 33. But I will not say anymore about that now.
Whew it makes me exhausted just retelling this story. So how does that affect a little boy when he turns three compounded with a speech delay? The difficulty voicing his wants and needs are a challenge.
Food and sleep are ongoing battles. Dave is dealing more with the sleep issues today since I am up with Gabe during the night. Much to my delight Gabe is a much better sleeper than Jack ever was.