Wednesday, March 27, 2013

This new world

This new world we live in is crazy.

A few months ago, air freshener was air freshener, vaccines were necessary evils, and M&Ms were great potty training candies.

This world I live in now is terrifying.

Not only is every single food a potential allergen issue for my sweet boy, but I worry about it being lesser so for my other two.

Food dyes.  In EVERYTHING.  Easter this weekend.
Vaccines harm babies, give them encephalopathy, autism, and can even kill them - SIDS.

Plastic is full of toxins. Microwaves are the devil.  My fruits, vegetables, whole grains have to be organic and gluten free and even then, it's questionable.

Even the freaking lightbulbs!  The mercury in the lightbulbs!    The chemicals in the town pool this summer!  And the sunscreen!   The shampoo in his hair, the lotion I rub on him, the laundry detergent I wash his clothes in.

I used to not care when my babies dug around in the dirt and got messy and smelled and tasted and explored.  

Now i have to worry about pesticides.  My neighbors lawn treatments.

Now I'm just positively terrified.

Monday, March 25, 2013

Here it comes again

It seems this grief is cyclical.    I will be doing fine, thinking I'm fine, that I've made peace, pushing forward, for days and weeks, holding onto hope for our future, and out of no where comes the wave of grief, knocking me down.    It comes when I haven't slept enough, am fighting a bug, whenever my defenses are down.  

It's here.    The only difference this time is that I know it will pass.  I know I will forgive myself again and cling on to new hope and be OK.    Before, I really didn't think I'd ever rise above the pain, the anger.

The boys 2 year appointment is coming up. I find myself fantasizing about smart ass things to say to the doctor when the subject of vaccinations comes up.   All the things I'd like to say, about how I trusted him, about how with 1 in 31 boys becoming autistic, he should be educating himself on less rigorous vaccination schedules and immunocompromised children.   On diets and treatment recommendations to help those of us affected.  About how mothers trust him, and he needs to be trustworthy.

Maybe I am wrong and he will say the right thing, or comforting things.   But I doubt it. Our only dialogue since all this has been through a nurse, and he told her to tell me that he will "grow out" of it. 

Such blatant disregard and disrespect.  Disrespect for this illness, disease, whatever you want to call it, that has us tortured as parents, watching our boy suffer to break through his inflammed little brain on a daily basis.  Disregard for the hours and hours of therapy we're putting in, the countless strangers coming through our home every week, the expensive treatments we're trying ON OUR OWN because medicine hasn't caught up with the Moms of autism.

Not looking forward to this visit.  

Friday, March 15, 2013

Slightly stressed

We all go through it, it's not just for special needs.

We all want what's best for our kids and to set them up for their best possible futures.

When Ava was a baby/toddler, etc, I had no choice but to work, so she was in daycare.  She thrived on structure, as she lived it.    She was very social and used to group activities, and all of that.

The boys aren't.  Yes, they are absolutely socialized, they are used to playing with other kids of various ages on playdates.  But beyond a general schedule of how the day goes, there isn't much structure to their days.

As such, their therapist thinks that since they will need to begin special ed when they turn three.  Well, maybe not they, maybe just Andrew, but I am guessing they'll both qualify, that we need to slowly and surely get them used to class and structured settings.   It makes sense.   Slowly take more classes so in a year, they are fine with being in school full time.

Gosh, what 3 year old should be in school full time, when he has a mom at home who would rather play with him all day?   I just don't get it.

I guess I am questioning whether the slow pulling apart from mom needs to happen already.  Andrew  is incredibly attached to me: I get 90% of his smiles and interest and eye contact and love.  Isn't there something to the fact that he needs me?

Would I be doing him a huge disservice by not starting him in full time special ed preschool?!

Monday, March 11, 2013

I don't know about the rest of you, but I'm ready for Spring.

We drove to Schenectady to see Mike's Gram this weekend, and the last time we'd driven to her house was Thanksgiving weekend: When we thought Andrew was deaf.   The waves of terror and anguish I was feeling in November came back over me as we pulled up her driveway.

A hell of a winter. A long and short winter, of waiting: for tests, diagnoses, changes, improvements.

Spring is coming, though.

Today I put the boys in the backard swings, and had to adjust the straps, as they'd grown so much.  All I kept thinking was, the last time I put you guys in here, the word "autism" wasn't even part of our world, wasn't even anywhere on our radar.  Sweet blissful ignorance!

Andrew is doing better every day, still.  Knock on wood, we've kept him from getting sick for almost a month now, so just one period of regression in the last two months, which has enabled him to make huge strides.  SO much smiling, singing, learning to play with Ben.  There are a lot of moments in every single day where I think "what autism?" 

Today was a marathon day of therapy.  We have a lot more like this coming, and he handles it better than I do!  I'm so tired. 

Today we started Fish Oil.  Words are coming, I hope! 

Saturday, March 2, 2013


This week, I shared that video of Andrew with the therapists that came to the house.
They couldn't believe it was such a recent video.   They see the signs, same as us, but he was so engaged in talking with me, it's stunning.

They say, just as I feel, the fact that he wasn't gone very long is going to work in our favor.

Initially, when we got the Birth to Three referral for the boys, we waited a really long time (almost a month) for their assessment.  Almost a month again for an IFSP.  Finally, I switched agencies.

When our first therapist came out, I had a little boy who would barely look at me.  He wouldn't let me read to him, he wouldn't sit on my lap for long. He wouldn't let me help him do puzzles.  He wouldn't let us sit in our dining room chairs.  He was basically just a shadow of who he had been and he was pretty unreachable.

That was the day after Christmas.  So just two months later, I've got a little boy who will make eye contact much more frequently, who loves to sing with me, loves being read to, loves playing with me and Ben.    He's definitely still autistic, but there's so much to celebrate:  He is in there, and he's coming out more every single day. 

The therapists say it's good that we recognize that and celebrate every little progress.  And I really can, because it impacts every minute of our lives together here, whether or not he'll look at me!  But there are moments, I just want him well NOW.  But it's only been two months.  We are on the fast track to wellness, and we'll get there.

So far, it's been the GFCF diet that's made the biggest change in him.    We started probiotics and epsom baths.  I think I'm seeing some nice changes from the baths but it's hard to say.  Not sure what I'm doing next: probably fish oil.  Any thoughts?