Just another Minnesota Mom blog.

This Feels…Weird

Posted: January 27th, 2015 | Author: | Filed under: Autism, Early Intervention, Speech, Therapy | 1 Comment »

It’s been just over 4 years since the word “autism” was brought into our life.

The boys have had many (MANY!) evaluations.  They have logged countless hours of speech, and OT.  They have graduated from an autism day treatment program, and they stand before me looking far different than they did on that December day, when Early Intervention came for a speech evaluation.

Today, after 3.5 years of speech and OT, the boys have “graduated” from Fraser.

This is most likely just a break from speech and OT, and a much needed one.  We are now mentally in a place where this seems like the right thing, the best thing, and we are not afraid of scaling back to “just” school, and the services they get there.  I couldn’t say that two years ago.  Who am I kidding? I couldn’t say that a year ago!

The absolute hardest thing for me, is leaving Lincoln’s amazing speech therapist.  All of our therapists have been great, but Maureen has been with Lincoln since day 1.  From early on, she was his “person”.  It certainly wasn’t me or John.  It was sometimes Grandma, but mostly Maureen.  It took much longer for Lincoln to find his words, we were preparing ourselves for him to never talk.  And it was really hard to imagine, considering Wyatt had started picking up sounds and words just a few months after starting ECSE.

Lincoln Speech

But then, he started naming letters.  And making more sounds.  And then words.  And then came the reading.  Oh the READING!  And now, we have a 6 year old who is constantly narrating life, navigating all of our adventures, and telling some very tall tales.

Today, as we walked from our car to the front door of Fraser, I remembered those first months, when they were not quite 3.  The boys had to wear their backpack leashes just to get through the parking lot safely.  I was an emotional mess at every session.  Everything was overwhelming.  Autism was scary.

I recognize that although they still have some issues in waiting rooms (Wyatt can’t walk by a reception desk without checking on the state of the computers), it’s really hard to leave the building without making a dash for the “big gym”, and they still have countless hurdles ahead of them…they have come a really long way.  I have come a long way.  Autism isn’t nearly as scary as it seemed in 2011.

Today feels really good.


Goodbye Gluten

Posted: February 27th, 2013 | Author: | Filed under: Autism, Food, Therapy | Tags: Gluten-free | No Comments »

I have been dragging my feet on making dietary changes for the boys since we first got our autism diagnosis just over 2 years ago.  (Sidebar: has it only been 2 years?  It feels like it’s been forever!)  For every study or anecdote that says a gluten-free casein-free diet makes a difference, there is an equally compelling study or anecdote that says it makes no difference at all.  This is pretty much how it goes with anything regarding autism treatment.

So, considering the boys are frustratingly picky eaters (at least at home) and probably 75% of what they will eat is dairy- mostly milk- I really hoped no one would ever suggest we try one of these diets.  Because they know as well as I do that it might not, and probably won’t, make any difference.  At least not the kind of meaningful difference that they are looking for: a calm body that leads to sitting and attending.

But, it happened.  Lincoln’s OT suggested we look into it, so here we are.  Gluten-free.

Well, we are in the process of getting there.  Monday is the last day they will have school lunch, so starting Tuesday they will be 100%  gluten-free and anything we eat as a family will be gluten-free.

Over the past week- they have refused to eat every dinner I prepared (Fresh20 Gluten-Free menu, you are not kid friendly).  Which really isn’t unusual, it was just different in the fact that we didn’t have a peanut butter sandwich to fall back on.  Peanut butter and apples or bananas is getting a lot of play in the snack and breakfast department, so, milk it is!  It’s like have 35 pound infants over here with the amount of milk they drink.

Our old breakfasts were Corn Chex, Rice Krispies, or Life cereal with fruit, and sometimes waffles or oatmeal.  They are suddenly not fans of cereal, so bananas and milk have been the go-to breakfasts the past few days.

Snacks used to be granola bars, fruit leathers, string cheese, fruit, or goldfish crackers.  They aren’t fans of my gluten-free granola/ breakfast bars and all of a sudden are not fans of cheese, so I purchased any snack I could find with “Gluten-Free” stamped on it.  They are now huge fans of Pop Chips.

Tell me again how eating this crap is better?

I haven’t tackled lunches yet.

If it were just me and Yogi Dad, going gluten-free would be easier- we enjoy food, and the fact that fresh veggies, fruits and meats are all part of the diet makes it a little easier.  Rice, rice noodles- I can hang with that*.

But,  when your kids already don’t eat, it seems like you are just setting them up for a drastic weight loss- you cannot survive on milk and a multi-vitamin.

Which brings me to my next point:

This is all probably in vain considering we haven’t taken away dairy and we don’t plan to in the near future.  I have a hard time substituting milk with sweetened milk substitutes.  And yes, I am aware they come unsweetened- my kids would be on a food strike if I tried to replace their milk with unsweetened almond milk.  We have tried.  Hemp milk, goats milk- we go through a gallon+ a day.  Unless you can show me goats milk that costs less than $3 a gallon, it ain’t happening.

So, here we sit.  Doing this for some unidentified amount of time- 3 months?  6 months?  Considering there has not been identified gluten allergy or intolerance, it kind of feels like a waste of time and energy.  Right now it’s just a total crap shoot.  These are the hoops you jump through when there are no answers, when there is no cure, no identified reason for a disability.  You just go from therapy to therapy, latching on to ideas.  God help me if I ever get to the point where subjecting my kids to a bleach enema sounds like a good idea!

To be honest, I don’t in any way think this is going to make a difference in their behaviors.  But, we have to make an effort, so I will be putting in the effort.

Did I mention Yogi Dad went vegan for lent?  Seriously.  I need a personal chef right about now.

I will try to keep updated here or over at www.MinnesotaMom.com as to our progress.

*We are not forcing ourselves to go gluten-free- there is no way in hell I could give up a good beer and cake.  Anything eaten away from the boys- after bedtime, meals out etc. is fair game for whatever kind of flour-fest we can muster.