villages and autism

I know it takes a village.  In my work, that's a lot of what I've been providing to families who need them, this week in particular.  However, I've been lax to reach out to my own village at a time we could use some kindness and good/better karma directed towards our little corner of the universe.

This autism-heavy week has been a stark reminder of the hell brought on by what this disorder can do to my kid.   Many #youmightbetheparentofachildwithautism quips were batted around in the past week by me and many others .  That  light-hearted back-and-forth was a welcome diversion from what autism really exists as in our home.

Reality sunk in on Sunday after I had what seemed like really awful heartburn (having only experienced once before this sharp, searing pain) and someone mentioned gallbladders.  Not heartburn, after all.  Turns out my gallbladder and I don't get along so well and it should come out.   As if I have time for that.  A cause? Stress.

Today, Andrew's laptop screen was broken during a power struggle/behavior/meltdown.  This is the second broken laptop in 4 months.  In fact, this was the laptop that replaced the other one that got thrown on the hardwood floor during a similar tantrum.

The pieces of the puzzle which is Andrew aren't fitting together very well at all this week.

He's 12, a boy in what is becoming shockingly more and more like a man's body.  While his bears have brought him great joy and comfort over the years (remember, he doesn't have functional play skills and even could care less about video games, oh how I wish my son would play a game on the Wii like other boys his age), nothing brought him peace tonight.  For seven hours, with short breaks, he was a ball of anxiety, uncomfortable even with my touch or reassurance, which is not typical for him.

He was able to say, "I've been giving most people an attitude recently. I hate lots of people."  My heart broke.  So many people love him, yet he knows (and now names) people he views as having abandoned him (in his mind, because he's autistic).  That's his new "out, by the way.  When the behaviors happen, he maintains, "I'm tantrumming and not calming down because I am autistic".  This drives his older sister crazy; he drives her completely nuts in general.  I feel badly for her, being the older sib of a child with autism must be so damn hard.

As a mom, I feel paralyzed.  Not a little unable to help, but a lot unable to even get through to the boy who usually loves to snuggle with his mom, make brownies, or have endless conversations about the complex, intricate lives of the many bears, Build-A-Bear and others, who live here.

A question he kept asking over and over again today was new. "Are you and Dad every going to get married again?"  I told him we were not going to get married to each other.  Then he wanted to know if we would marry other people, have more kids, and, by the way, would they have autism just like him.

My little boy, not so little as he is taller than me, lies next to me, a bear in his arms, a medication for anxiety and sleep in his body, a prisoner to autism and to the hellish chaos it creates.  Tonight, fully recognizing all the things I have to be thankful for and that others have many more challenges, I mourn for the boy I thought he would be and commit to trying to better understand and accept the boy he is. I pray for strength for him; as I also pray for strength for those around him.

He needs a village now, whether he wants to admit it or not.  His sisters and I could use one, too.  Hopefully, tomorrow will bring Andrew some peace.

Giving thanks

Today, I am thankful for friends who are my chosen family, children who give me purpose, bring me joy, and who I love more than life itself, work I truly enjoy (along with some really wonderful clients who I feel blessed to also call friends), and a village who envelops my family in caring, kindness, and strength.

Friends, however few, are honest, fun, compassionate, giving, and even inspirational.

In a year where I thought I had found my faith, only to lose it again, I give thanks to God or whatever greater power has existed, and hope she/he comes back into our lives.  I give thanks to the good people at our church, who offered Christian love and support during a very tough spring/summer and am glad my kids made some special friendships there.  

I especially give thanks for the moms I know who show me every day, in small and large ways, how to be a better person.  I'm still learning and am beyond impressed by what I get to witness every week; moms being caretakers and most times taking good care of themselves, too.

This year, I am thankful to be in a position to help others, the place I lived in for many years pre-2006.  It gives me a sense of purpose to support others, just as others have supported us when we have needed it.

Finally, I'd be remiss to not to be thankful for the very special kids I work for and with, along with some very talented educators.  I am inspired by children who overcome such adversity and by their parents who only want them to be happy and succeed.  I am fortunate to be able to earn a living helping children thrive.

Happy Thanksgiving, friends!  May you be as blessed as I am.  My hope is that we all, me included, will be able to realize that on even the not-so-good days that inevitably occur in the cycle of life.

Little People

Sometimes, you get to play hooky from all the household chores, sit down on the rug and play with your kid.  At 9, Sarah still has an amazing imagination.  We have loved to play with this set of Fisher Price Little People, circa 1978-ish, my set from my childhood, over the years  The airport, the place, the hospital, camper, house... it is a blast to play with.  Coupled with our "bucket of ponies" and some of the other few toys we still have, Sarah and I had an awesome afternoon together.

Grace happens

This morning, when it was still pitch black outside, I walked to the back porch, fleece on, and took in what the week had been, and mentally prepared myself for what was going to be a challenging day.  Breathing in the cold, fresh air, I stood, alone, and enjoyed watching the beginnings of the sunrise. 

The morning seemed, in advance, a mountain to scale, not knowing how high we would climb, or if we would need to descent before reaching the peak.  In any high stakes meeting where people are counting on me, I do feel the weight of the world on my shoulders.  I knew we had the right evidence and that I had produced high-quality documents.  Without resolution, today could have lead to a not very fun week after Thanksgiving for many people.

The meeting was painful only in the sense that some of the people there did not want to be there and seemed so uncomfortable.  But, folks needed to hear me out, and did so respectfully.  Afterwards, we needed to hear them, and did so respectfully.

In a moment of grace, it became clear we were both looking for the same thing.

It makes me happy to know a student will have a chance to heal and learn;  I was able to play a small role in making that happen and that is a great "paycheck", the  thank you from a grateful mom.

Sitting here in the calm, feeling confident, I am chatting with my son who randomly gives me kisses on the top of my head, enjoying some leisurely discussion with my daughter, and even snuggling up with the cat.  Tomorrow, I'm taking a day off from work and going to do something nice for myself.   A hike sounds like just what the doctor ordered, or maybe just a walk around Horn Pond.  Later, my teenager can meet a potential new friend and bond over social justice issues and a love of animals and all things not mainstream.

I am so very grateful for my friends, my children, and my village.  Furthermore, I am grateful that I get to do work I love and *maybe* change kids' lives along the way.

Guest sib post by E (11)

      As you may recall from my earlier post I said that A and I aren't getting along. But a lot of things have changed since then. Andrew and I get along very well now. I probably spoke to soon, tomorrow he might hate me, you never know. Even if he does hate me tomorrow I will love him just as much as I always have. 
     I don't like to say he has Autism because Autism can mean so many different things, so I like to say he has "Andrewism". "Andrewism" can make our life very challenging but very rewarding at the same time. He might scream all the time but he is one of the smartest kids I know.

     A's Savant skills have made him the smartest kid I know. If you tell him the year and day you were born he will tell you the day of the week you were born. Did I mention this was he was 5. In the end A is the only brother I have and I wouldn't love him any more if he didn't have Autism.       


-by Emily, Age 11
      

The public meltdown

This afternoon, I almost had one.  But, alas, it was my son's meltdown that I reference.  A trip to get what was supposed to be a 5 minute haircut turned into a near-total catastrophe.  The only thing that redeemed the experience was the fact that Andrew did end up with much shorter hair.  I won't be mentioning to him how handsome I think he looks.  I don't want to give the event any more attention than it's already had.

We've gone to the same hair stylist for A for almost a decade.  We love Anita.  I would drive twelve hours to see her.  The patience she exhibits, coupled with her tremendous skill with a pair of scissors, make her a favorite of many of my autism mom friends.  Her friendly demeanor with all kids make her a favorite of moms of completely typically developing kids.  Did I mention we love her?

Armed with two ABA therapists, the process went as it has 50% of the time A has ever gotten his hair cut.  He hates how it feels.  Unlike girly-girls like me who love trips to the hairdresser for the scalp massage during the shampoo alone, the experience of someone touching his head, and the sensations from the buzzer (only for "clean-up"),  make A miserable.

It's different when your kiddo is 5 years old and taking a fit in public.  A was little, his meltdowns less intense, and he was cute even when upset. Mostly, it's not entirely uncommon for a 5 year old to melt down in public.   Of course, people stared and many along this road made snide comments, which stung no matter how much I wished that hurt away.

It's an entirely different experience when your autistic child is 12, two inches taller than you, and weighs 140 pounds.  No one thinks he is cute.   Everyone thinks he is crazy.  I feel like people are staring at me (well, many are at least glancing at me wondering what the hell is going on), having decided I am an terrible-awful-no good-very bad mother.  I love my son.  That doesn't translate to "I love autism" and understand what to do all the time.  I wish I did. I wish all the money we and others raise for autism research felt like it was helping; that anything was getting better for treatments or that anyone was close to finding the root cause which cold lead to a cure.  Days like this, or those when he runs out of the house screaming or melting down because all the circuits in his brain can't and don't connect, make me sad.

He got through today.  I got through it, too.  Anita is an angel.  Andrew will need, and get, another haircut in 10-12 weeks.  And so the story goes, again and again and again...