Monthly Archives: February 2012

Where I Realize I’m Strong.

Standard

Sometimes I feel like my life is just one neverending day, and in some metaphorical sense, I suppose this is perfectly so.  But in any case, days string together and before I know it, another week has passed, and here we are…

It doesn’t change that things are going well even if challenges continue to evolve. For me, I mostly struggle with being behind on chores, with sucking up my pride and letting therapists in my home almost daily despite the messes, feeling constantly rushed or behind in some way.  I’m in a good place, but I’m tired.  And I am fully aware that I would feel partly this way even if there weren’t so much going on with the little ones—being a Mom who is home with kids on her own is hard… add in that they are two under three… add in that my husband works an hour away… that he is working on his doctorate… that I have a mostly work-from-home job in communications… that I also freelance write for a family magazine…– I think it is fair to say I would feel overwhelmed regardless.

But it is that much harder.  I don’t just sit and enjoy my kids—we spend a lot of time just living and loving and laughing, but the cold hard fact is that when you have children who develop atypically and learn differently than other babies, your daily activities turn into therapy more than not.  They have to or your children are not being cared for in the right way.  I’m not overkilling it—I’m being the best Mommy to the kids I have.

Or at least I hope so.  I’m trying.  And I realize that I am starting to at least let myself sit down and take a breather every once in awhile.  Sometimes Mommy does need to have a warm mug of coffee while the kids play on the floor, whether they are repetitively pushing buttons or saying one phrase over and over or mixing and mixing and mixing or neglecting to turn a head to their name being called or staring out the window at the cars going by… for fifteen to twenty minutes, that is life.  It’s our family’s life, and I have to accept that. 

It’s hard because you know that therapy is a process, that progress is slow, that every child is unique.  But there seems to be an undying hope within me that one day we will go to bed without worrying about seizures disrupting my son’s sleep or an intolerance to wheat and dairy. Because autism is not just about social problems… there’s a lot of comorbid issues here that color so many choices.

And I am NOT complaining.  I guess I am emptying… emptying the bucket of things swelling inside me right now.  Because harder things have come than what I have written about in the past months, and I am learning to be more courageous.

Courageous enough to handle that my baby girl qualified for early intervention and all the things that may or may not be at the root of it.

Courageous enough to learn new skills to keep my son regulated in order to deter him from dangerous sensory seeking behavior such as shoving toys or food in his eye, from smashing his knees into the wooden floor, from pinching his sweet soft skin until it bruises.

Courageous enough to know my son is starting to show that he is diagnosed with autism in public places… he’s just hitting an age where things start to become more obvious, especially because he does talk and repeat so much in a nontypical way.

I guess I sound sort of dramatic and things sound awful, and even though I tear up about it when I write it, I am much more calm about it than I would have expected myself to be.  I am strong-willed and determined to be the Mommy they need me, and I don’t wallow. I cry, but only after long days once all is quiet… releasing tension needs to happen.

All in all, I’m learning about myself more than I ever have… I’m strong.  And I am weakest when there is wiggle room to fail.  But there’s no wiggle room in being a parent.  So here I am, strong and prepared to stay that way.

Advertisements

Just.

Standard

My son had an MRI on Monday.  He had genetic testing at the end of December, and we are still waiting on results.  We’re doing the Gluten Free Casein Free diet, but his digestion is still perplexing despite his ability to move his body much more (he started walking up and down the stairs holding onto a railing AND there are brief glimpses at fingerplays AND successfully using a fork in certain situations sometimes since losing gluten and casein).  We had him evaluated by a SLP at the Children’s hospital where he was deemed to have language abilities at age level, but nevertheless and expressive language disorder with pragmatic impairments to say the least.  We’ve got a solid therapy schedule.  We’re monitoring seizure activity in a diary. We’re doing everything we feel like we can do within reason.

I think my husband and I are coming to realize, though, that we might be at the end for now when we get the results to the most recent testing.  This is an ever-changing journey as our son shifts between different developmental stages and regresses in certain ways while speeding ahead in other ways.  Things make sense and don’t make sense, but we have a rhythm.  And we’re now in a place where we need to accept that we might not get any explanation from the testing we have had done.  We are very responsible for getting this testing done– things need to be ruled out (we are not just desperately searching here).  We might hear good things– that there is no chromosomal disorder or abnormality in his brain.  He might just be diagnosed with autism spectrum disorder.

It might just be autism spectrum disorder.

Why is that so hard to accept?  The vagueness?  The vastness?  The ambiguity… the uncertainty in what could be clarity… just autism.

 

Am I ready to hear that?  I’m not sure.  But I need to prepare myself.

Sh*t that makes my son laugh.

Standard

We’re busy here lately.

Monday

2.5 hrs Developmental Intervention

Tuesday

1 hr Speech Therapy

Wednesday

OFF

Thursday

1.5 hrs. Developmental Intervention

1 hr. Occupational Therapy

30 min. ABA

Friday

1 hr. Occupational Therapy

30 min. ABA

 

Fairly soon, it will drop to 2 x 1.5 hr DI sessions with the addition of some form of Physical Therapy.  In addition to what our schedule above says here, I model my play with Floortime, and I do 2 x 15 min ABA sessions for eye contact daily in addition to daily teachable moments.  My husband is going to start getting him to a 30 min weekly Music Therapy group, too.  Major changes come in late April when he will start a “preschool” program 2 mornings per week instead of DI.

 

So, to celebrate how busy we are, I will tell you that my son thinks words are hilarious.  Seriously, he laughs so unbelievably hard at just the saying of a word sometimes that all in the room chuckle.  He is a giggle machine.  Here are some words and phrases that have causes particular hilarity:

plop

gook

crumb

fuzzy wuzzy

rump

pumpernickel

coaster

blood

toaster