The New "Normal": Living with Autism: Just Keep Swimming

What a crazy busy couple of days this has been. After yet another migraine filled weekend I was frankly worried that I couldn't get everything done these past few days. But as always, I muddled through. Not that the week is over, but the worst is. Sometimes I feel like Dory from Finding Nemo- Just keep swimming... At 8:30 yesterday morning we met our family photographer at a park for portraits- while I have been dreading this, it was also hugely important to me. I wanted to recognize and celebrate our little family and our survival after the past year. We even did some shots of just John and me, first time we've done that since our wedding. That part was really nice. Nate was incredibly fussy the whole time- granted it was freezing outside, but I had both boys layered to the max and thought they were rather cozy. It was breezy, and Nate even cried when we put him on the swings. The only ways I could get a smile were to throw him up in the air or alternately squat down on the ground and run at him really fast. Seriously, I am sore today. Our photographer Heather is amazing and I am sure she managed to get some good stuff.

After that we had an 11:30 appointment up at our boys' autism specialist Dr. Brenner. Literally on the drive over Nate developed sure fire symptoms of pink eye- by the time we got there my poor boy was crusty. That wind must've hurt so much! Poor buddy. We hadn't seen Dr. Brenner in several months and I knew the appointment would be jam-packed. I have to touch once more on just how amazing this man is- he spent over 2 hours with us- now granted he took all of his calls while meeting with us, filled out requisitions and ordered his lunch. I am completely great with that- his time is valuable and the fact that it was an "insurance covered" visit means that it should have lasted no more than 15 minutes for each child. Clearly he does not subscribe to this guideline, at least not with his kids on the spectrum. He went through all the lab results, there were several interesting things. They do both have the MTHFR gene- as he stated, many many people have this, it's only in the past 15 or so years that it has become a "problem". There are many theories about this, but the bottom line is that most professionals think it has to do with environmental exposure- BPA, antibiotics, vaccines, contaminated water and soil, just to name a few triggering the issues this gene mutation can cause. He did prescribe a form of folic acid that is further broken down- leucovorin. Hearing this medication name made me freeze up for a second- it's a drug I used to give IV to my oncology patients when they were receiving certain chemotherapies. It basically guards their bodies from harmful effects of the chemo. That is where this drug is catalogged in my mind. Time to reframe. So that was one of the MANY changes he made to the boys' regimens. More labwork, including urine. He increased Nate's dose of methyl-B12, asked me to try it with Jack as well. I am worried sick about giving Jack injections, but it is what it is. We can do just about anything we put our minds to as a family. He also prescribed something called MSM for both boys, told me to increase their P5P, start them both on GABA, and start transdermal glutathione. Oh and just in case I wasn't about to pass out, he would also like me to try adding the Feingold diet. This eliminates all synthetic coloring, artificial flavors and preservatives and all phenols. Since we do most of this, doesn't sound so bad- except that phenols are basically in most fruits- apples, berries, grapes, oranges, peaches, plums, tangerines. Jack's favorite foods. Awesome. Not feeling the motivation on the elimination of fruits. Sigh. Jack's hair samples came back with high levels of mercury. One of the urine tests should confirm this. This was the opposite of what I was expecting- thought it would be Nate, if only one of them. Jack had an incredible amount of dental work about a year ago due to an enamel defect, and now John and I are wondering about what type of fillings they used on him. Further investigation of this is needed.

After that appointment, I went home and put in a half day of work. Went to bed early as today was a full work day, another md appointment for Jack, and squeezing in voting. Then last night, the shit hit the fan. Both boys were up off and on all night. Sleep has been becoming more of an issue over these past few weeks again- Nate has been falling into a pattern where he wakes up at about 2:30 am and refuses to go back down- screaming until I come back in, like tantrum screaming. I resolved last night that I was going to let him cry it out. It usually takes 1 or 2 nights to get him back into his usual pattern. Last night Nate had other plans. After he woke up and I rocked him for a few minutes I put him back down and of course he started screaming. Then I heard the usual thuds of him throwing everything out of the crib. Then I heard a really big thud and a scream. And Nate was out of his crib. CRAP. Just to be sure it wasn't a coincidence, I put him back in and watched him basically swing himself over the bars- no leverage, nothing to climb on, just sheer force of will. And as I watched him I realized- I. am. completely. screwed. I have no idea how I am going to keep my sweet baby in a bed. We all know by know that his receptive language comprehension is extremely delayed, and I just don't think he will be able to grasp this concept. However, safety first. So down came the crib today- thank you so much John for doing this so I didn't have to sit and sob while I did it. We were hoping to eek out another few months of him being our "baby". It's all so bittersweet.

Of course we had nothing prepared for this situation- so tonight he will be on his mattress on the floor. A gracious mommy friend will be letting us borrow her toddler bed for a few weeks until I can get a bed for him. I don't wanna. Does this really mean I don't have a baby anymore? That just breaks my heart....