Play Ball! Part 2: Lessons from Moriarty

This past year I read a good book by Liane Moriarty.  Actually I read every book by Liane Moriarty after being wowed by Big Little Lies.  The story relevant to this discussion, however, is What Alice Forgot - the tale of a woman with amnesia who finds herself jumped forward in her life 10 years, sorting through what her life has become and struggling to understand how she has come to be where she is.  As she picks up the reins on the life of her older self she is at times dumbfounded by the choices she seems to have made, by what she has allowed to happen. Without great thought she acts to corrects Older Alice's blunders.  After a single afternoon watching her oldest child's misery at sport practice she removes the child from the team.  She will [spoiler alert] remember it all.  She will recall why enforced sports participation seemed like a good idea; however, in that moment it is a simple straight forward matter and it is obvious what needs to be done.

I am not sure when I let youth sports become My Battle.  I am sure of one thing, though -- it is a simple straight forward matter and it is obvious what needs to be done.  Yes indeed, Mr. Gaiman, Alice did provide not just an escape, but a meaningful and educational one.

This past Fall my youngest played youth football and my oldest sat with me on the sidelines.  The world did not end.  He chose to try soccer instead where he had fun and struggled.  At times the struggling outweighed the fun.  His particular place on the autism spectrum means he has many real challenges to success with physical activities.  Now that he is getting older he is actually noticing, "Hey! Everyone else is doing better than me!".  He feels the frustration of working just as hard as everyone but yielding poor results.

Physical activity is still important.  I'm not giving him permission to do what his heart most desires and become a total couch potato.  I am acknowledging, however, that baseball with all its fine motor intricacies is not the smartest place for us to put our energies.  And I know that my younger self would say, "Duh."

Play Ball! Part 1

I've always wanted my boys to play sports.  I watched my little brothers grow up playing soccer, baseball, basketball and football with my dad as their team coach most of the way.  I still have the trading cards of my little brothers in their first years of little league, little guys holding up little bats and looking more adorable than there are words for.  I could probably recite by heart my father's speeches on the benefits of team sports and I will admit that he convinced me long ago.

I can remember trying to engage Little Guy with ball play and how, from very early on, he struggled and quickly lost interest in trying.   I didn't know then what I know now - that simple things are often not simple at all for him.  I didn't know that it was extra difficult for him to plan and execute body movement or that he experiences double vision and has difficulty tracking moving objects.  With those barriers success with balls is pretty hard to get to.

Last season when I signed him up for Little League, I knew.  I knew it would be hard for Little Guy and I knew it was likely to not be a successful run.  My dreams aside, I probably wouldn't have even tried but for one very important reason -- Big Boy.   Big Boy who is smart and funny and typically developing and enjoys playing ball.  Big Boy I knew could be successful at Little League and I didn't want to deny him his chance at it.  And Big Boy was not going to want to do it unless his big brother was doing it, too.

So with great trepidation and some hope I signed them both up for T-ball and it was...just fine.  At that level the kids are little and they're all learning.  Some kids have more skills than others but there are plenty of tikes out there who aren't great.  Little Guy couldn't throw or catch well but the same could be said for other teammates.  The coaches were supportive and everything was good humored.  Little Guy was challenged in many ways and if he didn't bubble over with excitement to be playing baseball he did enjoy many parts of it and had some great experiences.

This year has been different.  

By the time the season even started he'd taken a few balls to the face in the process of trying to teach him to catch.  This year before the season even started there was frustration.  A year of development and some practice later he has progressed by bits while Big Boy's progress is more significant.  Little Guy has not yet put together the larger implications of a kid 2.5 years younger out-performing him.  He just knows that he works hard and his output is not so great.  Big Boy works hard and gets a much better result.

And it's not just Big Boy.  This year almost all the kids play better.  If Little Guy hasn't noticed that I know who has -- all the parents, grandparents, aunts, uncles, cousins and friends that make up the crowd of spectators at each game.  There is more of a competitive edge to some of the peanut gallery this year.  They are not flagrantly mean but they get frustrated and say careless things that make me want to slash their tires from time to time.  They haven't crossed the line yet but every once in a while they go stand by it.

Still, if you set the difficulty of practice aside, both boys enjoy actually playing the game.  I ask myself often if I'm doing the right thing pushing Little Guy at something that is so difficult for him. Then I see his grin as he does a little victory dance on first base after hitting the ball.  I see him sitting on a bench playing rock paper scissors with a teammate.  And I remember that many things worth having don't come easy.

Parenting contradiction #2049

Part of the job of raising little humans is training them out of bad behaviors and into good ones, or at least attempting to do so.  There is a judgement each parent makes with their little ones -- what should be changed?  What is fine as it is?  It is a troublesome line to walk.  On the one hand we as parents want our children to feel completely loved just the way they are while almost simultaneously we press upon them our desire for improvements.    It is a curious juxtaposition of "You are so awesome!" and "But let's work on x!".  The latter makes a lie of the former, acknowledging implicitly that there is some aspect that falls short of awesome.

The push for learning and changing is probably part of every parent child relationship but perhaps none more so than in the case of high functioning autistic children.  Sometimes their very proximity to the norm increases the ambition to get them there, as if they were a puzzle piece that almost fit.  If it was a radically different piece you wouldn't even imagine trying to make the fit, but since it's pretty close you are sometimes tempted to hammer it in.

I worry about this.  Our Little Guy has had so many different kinds of therapy -- all amounting to "learn! change!".  It's gotten him where he is today -- able to participate in life in a way not vastly different than his typically developing peers.   I see the obvious importance of Little Guy improving basic skills.  I hate the message behind it that feels less and less hidden the older he grows.  All I can do is keep reminding him that we do love him completely just the way he is, even as we seek to change him.

where art meets heart

This was an epic year of reading for me and it ended on a high note.  I had set aside something special that I knew would be wonderful.  To put it in terms Hubby would understand, it was like the last chocolate I had been saving, hidden away, and this December it was finally time to enjoy it. The "it" in this case was Fool's Assassin by Robin Hobb.  Technically it's the first book of a new trilogy, but in reality it's the 7th book to follow this set of characters and the 10th book set in this particular fantastical world.  While Fool's Assasin starts a new story these characters are old friends.

[Read no further if you wish to avoid spoilers]

So far our hero has faced war, assassination plots, witches and dragons.  This 7th book finds our hero now facing...the reality of having a special needs child.  Yes, there are still dragons, murders and other intrigue, but the primary drama of the majority of this book is the relationship between our hero and his youngest child, Bee.  Bee, who from the beginning is different. Bee who finds eye contact difficult, who is over-sensitive to stimuli, who develops speech late, who perceives the world around herself in such a different way than other children.  She is not autistic, she is magically extraordinary in a different way, but Hobb makes her as close to a spectrum child as possible.  

I expected an excellent addition to the fantastical story of Fitz and the Fool and I was not disappointed. I did not expect to find an insightful and heart-rending account of both what it is to be the parent of a special needs child and what it is to be that extraordinary child.  Epic fantasy meets autism in a meaningful and thought provoking way. 

This book has earned a very special place in my heart.  That one of my favorite authors took one of my favorite characters and explored what it means to be the parent of a non-typical child and what it's like to be that child -- it is an unexpected gift that I treasure beyond words.  As the parent of a special needs child I feel like she nailed down many different aspects of it.  I simply love this book.

then one day you are there

Deep into the last leg of my daily drive time I found myself lost in thought, puzzling over the weightier problems in our lives and in the lives of those closest to our family.  Stumped, as usual, for answers to most of these problems I started imaging various scenarios where I had a single magical wish and how I would use it.  Several delightful scenarios later I started drifting back to reality and I was somewhat startled to realize that in none of these scenarios had I wished my son out of autism --  something that in the past I have spent plenty of time wishing for.  On this day, though, when I weighed that idea my gut reaction was, and still is, rejection. The idea of changing who my Little Guy is seems positively revolting.  I love this kid the way he is.  I love the way his brain works and I wouldn't change what is so deeply a part of who he is.  We will continue to work towards growth is specific areas but the only changes I would wish are for improvements in the world around him.

It doesn't get easy

It's hard to believe it's been an entire year since Little Guy was diagnosed with autism.  We have come so far and I'm so happy with our progress.   Our efforts of aggressive intervention have paid off with encouraging growth in Little Guy's development. 

Although it is barely spring, I have been preoccupied with Fall and the upcoming school year.  Little Guy will be starting kindergarten and there are some decisions that must be made.  He can continue at the specialized private school where he has made such wonderful progress, or he can attend public school and be in a more mainstreamed classroom with some special assistance.  It is a murky issue, far from settled, and Little Guy's future depends on us choosing wisely.  No pressure. 

 It is also a very emotional issue.

At some point every parent probably has to let go of what they thought their child's life would be.  For some families it might be finding out their child hates sports although they are a passionately sporty family.  Or maybe it's the boyfriend, girlfriend, college or career they choose later on.  We love our kids, we want them to be happy and we can't help but create dreams about their future.

I had this dream, no this collections of dreams, about my Little Guy and his first days/years of school.  Dreams that were lent rich detail from the time I spent teaching at elementary schools.  Letting go of those dreams...difficult is not a strong enough word to describe it. I have to remind myself that there is joy to be found in different dreams.  "Welcome to Holland" continues to provide perspective and solace.

My Little Guy is amazing as he is.  We are blessed and lucky to have him.  I know that.  But I still struggle to accept him as autistic.  I still wish I could change it.  I still try to ignore it and resent reminders of it.  I still have some work to do.

On a less self involved note, this has been a year full of crises and hardships for so many of our loved ones.  The list really goes on and on.  The moral, I guess, is "such is life".  My sweet Little Guy has a future that isn't exactly what I had planned - oh, well!  I just got to this moment as a parent a little earlier than most.

(c) mamaofthevalley 2005-2015

breaking up with our preschool

We enrolled Little Guy in a summer therapy program for autistic kids and it has been amazing for him. We didn't plan for him go there during the regular school year because (a) it is a healthy commute away, (b) we knew insurance coverage would be a battle and it costs $$$ and (c) I felt it was important to keep Little Guy around typically developing peers.

But from the very first week this program started making a big difference for Little Guy. I thought I must have been imagining it, surely there couldn't be such improvement so soon. Then Hubby noted it. Then in the third week Little Guy's speech therapist, who was completely unaware of his participation in the program, commented how he had been blossoming the last few weeks. I finally accepted that we weren't just seeing what we wanted -- this program was truly and dramatically helpful for Little Guy.

We weighed out pros (the obvious benefit to Little Guy) and cons (3 mornings a week in a metro area with Baby Boy and time in need of killing, for one) but the choice seemed obvious. The kiddos well-being will always trump just about everything, and there is no denying the benefits for Little Guy. Baby Boy isn't exactly complaining about weekly trips to the zoo/museum/cool new park either. So inconvenience and cost for Mommy and Daddy aside, continuing on in the program became the winning option.

Then came battles with insurance, which seem to have come to a favorable resolution thanks to the involvement of a benefits advocate. This means the way is clear for Little Guy to continue on with his program. Yay! It also means that I have to let his preschool know that he will not be returning in the fall.

It is one of those bittersweet turns of life. His preschool is fantastic. They are great with kids, have an excellent curriculum and awesome special events. His teachers and the director have been wonderful and kind, not just to Little Guy but to me during one of the most difficult times in my life.

They were the ones that first clued me in that something was amiss with our high-functioning son. I can vividly recall Little Guy's first day of school ever, when his teacher casually commented that Little Guy didn't talk very much. Speech evaluations and therapy followed. It was in the lobby of that preschool one year later that the visiting Early Intervention teacher told me that she believed he was autistic and should be tested. In the weeks that followed the staff offered me kind words of comfort that mattered very much.

Leaving Little Guy's preschool is in many ways like leaving a community. Autism might have put us on the fringes, but we still had one foot in.

But again, this decision isn't about me. It's about what is best for Little Guy.

If I could rewrite reality, Little Guy would not be autistic. He would be starting his next year of regular preschool and thriving there.

In reality, Little Guy did not thrive there. He is not just another kid, and I am not just another mom.

Except...at his program in the city we are perhaps just that.

So dearest old preschool, I will break up with you and leave behind for good my preconceptions of what preschool for Little Guy would be. It is time for us to dive into our new community...hope there's water in that pool!

another day in the life

This Saturday morning I took my little folk to the store with me. Little Guy did not want to go. Little Guy seldom wants to leave the house. He handles leaving for routine things like his weekly appointments or school pretty well, but spring a trip to Target on him and watch the drama unfold.

It starts from the moment he is informed we will be going. His face falls immediately into an expression of distress and he emphatically tells me "No, we are NOT going to the store! We're staying home!" I say something like,"Yes, yes we are" which usually gets a "The store is broken" or another "No, we're staying home". I disregard his protests and he becomes my unwilling participant in getting dressed, brushing his teeth, combing his hair and getting his shoes on. Baby Boy, it should be noted, is excited and happy to be going somewhere. He can't wait to brush his teeth and put his shoes on.

Eventually we head out the door, Little Guy still protesting. Once in the vehicle and resigned to the fact that we are actually leaving the house, he attempts to persuade me to another destination. No, we are not going to the pet store instead. After a brief respite provided by the distraction of music, the selection of which is a whole other mini drama, we park at the store where we can return to the drama on the main stage, called "Little Guy does not want to go the store!"

We are walking up to the store now and he is still protesting. Simple, well reasoned explanations that we need to go to the store and won't be there long are a waste of breath. Both calm demands that he behave himself and sharper words to "cut it out" yield pitiful and tearful pleadings of "I'm sorry, Mom. I'm so sorry!" He will dissolve into further despair and continue to chant this until he is told "It's ok". Try to explain to him what he did wrong, why you're upset, or that what he did really wasn't cool and it will only yield more of the chant. If you don't say anything, he will eventually instruct you in between tearful sniffles, "Say 'It's ok.'" Those are literally the only words he wants to hear, the only words that will calm him down. This is how Little Guy reacts to 90% of any kind of rebuke these days, be it gentle or sharp, over something minor or something important. Tearful, pitiful, "I'm so sorrys" that make you feel like the meanest and most heartless person on earth.

And so we enter the wonderful land of Target: one unhappy preschooler, one happy camper toddler and one mom still keeping it together with most my calm in tact. We have 90 beautiful seconds of walking peacefully through the store before Little Guy starts screaming and announces he has hurt his toe. How I have no idea, and it looks fine but I pick him up and hug him and try to calm him down. He doesn't want to let go of me and is still quite upset, so I set him on the shopping cart handles and with him grasping on to me like a spider monkey push on to collect the items on our list. Soon I set him down and within 30 seconds he steps in front of the cart and gets his foot run over. Replay of crying, hugging, spider monkey scene.

In the classical sense of time our shopping trip has been quite short, but in Mommy Time we've been in Target for about 8 years when I put the last few things in our cart. Since that first 90 second stretch of peace not 30 seconds has gone by without some kind of unhappy outburst from Little Guy, who is truly an emotional mess at this point. Some of my fellow shoppers give me small smiles of sympathy and understanding and really I appreciate that. This isn't my first time starring in the public kiddie meltdown show, but that doesn't mean I enjoy it.

By checkout time the outbursts have evolved into dissatisfaction that I will buy him neither a unicorn pillow pet nor a toy tractor. In realization of his final defeat on these matters, Little Guy crouches into a ball in front of our cart and weeps while I swipe my credit card. The cashier makes small talk with Baby Boy, sitting in the cart and being adorable. As I sign my name on the screen the cashier says, "You have one cute kid". I know there is a way to say those words that is simply a nice compliment to Baby Boy, not intended as a slight to my other child. But that is not the way it came out of his mouth.

I guess I need little cards to hand out that say, "My child is not a brat, he is autistic." And also some that say "Fuck you, asshole."

Other kids

When Little Guy was first diagnosed with autism I remember choking out the words, "He's not like other kids." Then I could barely speak the words, but by now I've said them many many times and I thought that the reality of them didn't hurt anymore. Wrong.

Summer break from preschool gave me a break from seeing the typically developing peers - the "other kids" that my son is not like. We have been so busy with Little Guy's intensively therapeutic summer schedule that there has been little time for play dates. Today, though, this break ended with an outing with a friend and her son, a former classmate of Little Guys. Several times in the playdate I was blown away by the things that this classmate did. The way he could follow directions. The kind of questions he would ask. That he would ask questions. Ouch. ouch. ouch.

I didn't realize what a relief it has been for me to have a break from the "other" kids. Today has brought it back - the countless times the kids in Little Guys preschool class have shown me what a typically developing kid acts like, and how different my beloved Little Guy really is. People have said that Little Guy doesn't seem autistic. But if any one of them had spent 10 min. in his preschool classroom last year they would have seen the difference clearly.

I saw an article recently about a mother raising several autistic children, now in their teen years. She said that early on she had gone to grief conferences...that she had to mourn the loss of the children that she thought she would have to learn to accept the children that did have. Hubby thought that was a cold sentiment. I get it though. I really get it.

There was a little boy I thought Little Guy would be. I had a thousand little dreams of what his life would be, and already so many of those things have not been possible. I love him with all my heart and all my soul, have no doubt, and I am not remotely disappointed in him. He is so sweetly wonderful. But the fact remains that there are things I wanted for him that have not been possible, things that may not be possible in his future, and this is heartbreaking.

Little Guy is making exciting advances every day, and that is where my focus must stay. Some day again some other child will remind me again how far he has to go still and sometimes that will hurt. But we will move forward, Little Guy and I both, and I will hope and pray and work with endless tenacity towards improving life for Little Guy. As any mother of any child would.

Cigna, I hate you. Part 1,476.

Really the title says it all. But I'll break it down anyways.

#1) There are a handful of seasoned treatments that are crucial to the treatment of children with autism. They have been around for decades and are specifically recommended by the American Surgeon General in addition to many other well qualified people and organizations.

#2) Autism now effects 1 in 60 boys. There are many, many autistic children who need treatment.

#3) This costs the insurance companies a lot of money they would rather not spend.

#4) So they deny claims for these treatments, citing them as "experimental" in nature, American Surgeon General be damned.

#5) So legislation is being reformed on a state by state basis, and class action law suits against several insurance companies related to this specific issue have not ended favorably for the insurance companies.

#6) And so I get to have weekly conversations with Cigna. Of course the class action law suit against them was only filed last week. Which will either make things better or a lot worse for me in the immediate future. Awesome.

Our Little Guy is flourishing under treatment. But sooner or later we will not be able to afford to continue his treatment if Cigna doesn't step up and actually provide the service they have sold, i.e. medical coverage.

When, in a more perfect world, I would otherwise be planning to step up his treatment I am instead preparing a scaled back Plan B.

So, Cigna, I hate you. I'm sure there will be a settlement and Cigna will change their tune at least somewhat. But that doesn't help us now, as our child passes through this critical stage of development and we face a stack of medical bills.

time (and much support) heals...

What a difference a week makes. I can talk about Little Guy and autism with crying. I can, in fact, go an entire day without crying about it. I have talked to a lot of people about it now, and it is still raw and difficult to do, but doing it helps. Two Sundays ago we had a bad day. Little Guy's class had a church performance that ended for us when we left halfway through, both of us bawling. Blogging aside, I tend to be a private person. I don't like talking about emotional stuff, and I really don't like having emotional meltdowns in public. But the blessing of it was that it brought my situation to light, and I was met with love and support from many people. Much of it I politely brushed off, still embarrassed at my tearfulness. Days later, though, the warmth of it stayed with me. The words stayed with me and some of them began to soak in.
I am doing much better, and I know that we will all be ok.

"He's not like other kids."

As we have moved forward in Little Guy's evaluation for autism I have begun to make peace with the likely diagnosis. I have begun to talk to more of the people in our lives about it, to "break the news" if you will. Most of the reactions have been full of love and support with people offering words meant to uplift. Despite these best intentions few people actually hit their mark, and it has occurred to me that in this somewhat difficult situation it is perhaps unusually difficult to know what to say. So I offer up here what worked and didn't work, in the faint hope that it might be helpful to someone else.

#1 - Denial. "I don't see it. I think he's just ____" In one way it is sweet of people to not want to see that there's a problem. But having to (repeatedly) deliver an argument with supporting evidence is annoying.

#2 - Only one thing was worse than those that denied - those who too readily accepted . "So that's what's going on with him". It's a fine line. Or I'm a prickly person. Or both.

#3 - "There is no better mother/family to deal with this". Thanks for the compliment, for the sweet sentiment. But the fact that I have a background dealing with special needs children or that my husband and I are good parents does not by any means provide good grounds for the fates to send our family this challenge.

#4 - "That's great! [that he's being diagnosed]. I prefer to focus less on the label and think of it more in terms of identifying areas that need to be addressed." Delivered by his speech therapist, this is the gold star winner for me by a land slide. Maybe it's odd that I feel that way, since it tries the least to be comforting. Perhaps that is part of its strength - it doesn't try too hard. It's simple, it's logical and it implies hope. It says "Forget the word autism. This is just about helping your child". Bravo.

#5 - "There are worse things for a child to have." Thumbs up for this one, too. One morning around Valentine's Day I sat in the car crying after witnessing part of Little Guys morning at preschool. Then I started listening to my radio station, which happened to be doing a fundraiser supporting children with cancer. I listened to horrible heart wrenching story after horrible heart wrenching story, and even though tears continued to stream down my face it was very, very, good for me.
My Little Guy is wonderful and means the world to me and I am lucky for every day that I get to spend with him. When you can remember that the rest loses significance.