Addendum

I’m adding this addendum to my last post because this happened, and then this excellent, perfectly stated response happened.  And I realized that in my last post when I said if your child doesn’t like going somewhere don’t go, it may have sounded like I was suggesting “just be house-bound” or “don’t try outings that may be difficult.”  It may have come off as cavalier and that was not my intention.

My intention was to say: (1) go places your child likes, as opposed to places you think he/she should like, and (2) if its a place you think they would enjoy if only it could be accessible for them, work on making it accessible rather than forcing them into it in spite of it being set up in an inaccessible way for your particular child (eg sensory overload).  And finally, remember, as Tonia points out, sometimes you have to be patient and wait until your child is ready to enjoy certain outings/activities, because our kids have their own timeline, and it diverges from the neurotypical timeline for a lot of things.  And that’s okay.

Let me give some examples from my own experience.

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Driving for a day trip to NYC this last Saturday. For the last few years we wouldn’t have been able to do this. In the picture R. is smiling so hard because sister’s feet are in his lap.

Up until a few weeks ago, we had not gone out to eat as a family in about four years.  R. simply could not tolerate that environment, and the few times we tried it involved one parent going outside with him while the other ate with my older two kids, then a switch so parent #2 could eat while #1 went outside with R.   We found this arrangement rushed and unenjoyable, so we stopped trying to do it.  This was not an autism tragedy.  We simply adapted.  We enjoyed plenty of take-out instead, and from time to time my husband or I would take the older kids out to eat while the other parent stayed home with R.  This gave us a chance to have one-on-one (or one-on-two) time with them.  My husband and I would also occasionally go out for lunch just the two of us while the kids were all at school.  It worked, and it was no big deal.  But a few weeks ago, at age 5, we were able to go out to eat, all of us together as a family, for the first time in years.  It was exciting and we had fun.  And yes, it only worked because we set up strategic accommodations for R, and because we were patient enough to wait until he was ready and able to handle it.  In terms of accommodations, we went during non-peak hours because R cannot tolerate large groups of people.  We grabbed a large L-shaped booth in the back where we stationed ourselves on either end of the L-shape so that R could not bolt away, but had plenty of room to pace and jump back and forth along the L-shape.  We chose a restaurant with very loud music so that R could vocally stim loudly without disturbing others.  We brought his iPad so he could watch his videos, and we brought his own food (the restaurant was gracious enough to allow it) because his diet is very limited and we knew he would not eat anything we ordered.  I also want to reiterate that even with all these strategies in place, for the last few years it still wouldn’t have worked because he wasn’t ready yet.  And I think I should point out that R is hyposensitive to most sensory input, which is why this worked for us.  A child who is hypersensitive would need a quieter restaurant, and perhaps headphones to cancel out the background noise.

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R. with his uncle.  This is the first time in several years that we could take R. to my parents’ for Christmas. He was ready, and he did great.

In the beginning of this post I linked the Washington Post article about a mom who traumatically forced her five-year-old Autistic child into indoor spaces that caused panic attacks for him in an effort to make him overcome his anxiety.  Anyone who has followed my blog knows that for a very long time R had that same anxiety and panic in unfamiliar indoor spaces.  I have written about it in several posts like this one and this one.  Our approach for places he *had* to go to (not like Ellenby, who forced her son into a Sesame Street concert) was to work on it for months in the tiniest possible increments.  And when it came to non-essential places, like recreational spaces, we waited, and in the meantime, spent lots of time outdoors since he was fine in outdoor spaces.  This was limiting at times.  We could not visit family, they had to visit us.  If we wanted to take our older two somewhere, one parent (usually me) had to stay back with R.  But it wasn’t the end of the world and it wasn’t all about our sacrifices as parents.  We tended to think of it terms of poor R, who had to struggle with this huge anxiety despite being such a tiny little boy.  I have anxiety myself and have experienced panic attacks.  They are so terrifying.  And knowing that my toddler was having panic attacks broke my heart into a million pieces.  So no, staying away from places that caused a panic attack was not some huge sacrifice for us, it was really the least we could fucking do for our sweet little boy.  So we waited, and as he grew and acclimated to more indoor spaces (school, doctor’s office, etc) we slowly introduced new spaces with careful accommodations in place.  For example the Boston Children’s Museum does accessible mornings and evenings where they will open the museum during off-hours.  It is open only to children with disabilities and their families, they limit it to a small count of people (R cannot handle crowds so this is crucial for him), and they make sensory accommodations like low lighting and sound.  The first time we tried it he could only handle it for about 15 minutes, then he needed to leave so we left.  The next time he was able to stay for a whole hour.  We followed his lead and took it slow.  Now, at 5, he is in a place where he can go most places as long as it is not crowded and for discrete amounts of time (he makes it very clear when he is done and needs to go).  He also generally needs to be able to stim freely to help himself cope, so that also factors in when we choose where we are going.

The bottom line is be flexible and be patient.  And if, as time goes by, you see that the severe anxiety is not abating despite all efforts and despite the child’s growth and development, eventually the option of medication should be considered.  I know several parents of Autistic children for whom pharmacological treatment of severe anxiety was life-changing.  I’m sure you can imagine what it’s like to finally see your happy, smiling child again.  We need to end the stigma surrounding medications for mental health.  It shouldn’t be the very first thing we jump to, but when other approaches fail, an individual should not be left suffering when there are pharmacological options that could greatly improve their quality of life.

Alrighty, I’m off my soap box.  Thanks for listening. 🙂

Dear autism parent…

Okay.  I’m going to vent here a little.  And I’m sorry/not sorry if I am, in this post, seated on my proverbial high horse.  A Facebook discussion really got this topic back on my mind.  It drives me nuts when people share videos/blogs about how hard it is to be the parent of an Autistic child.

So much ‘autism parent grief’ is preventable if said parents could just let go of what they thought parenting would be like, and create something new that fits their child and their family.  This phenomenon is not restricted to parents of Autistic kids.  I’m sure every parent recalls those moments with their NT child where they envisioned this wonderful parent-child experience, but instead the child hated it and it was a disaster.  I think the meme below, created by and for parents of NTs, illustrates it beautifully.

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The difference is, it happens a lot more often and more dramatically to parents of Autistic kids.  And while I understand parents’ disappointment of lost expectations, there is a point at which you’ve gotta put on your big girl panties, accept your child, and stop setting yourself up for more disappointment.  …and setting your child up for more misery (!!!).

I can’t count how many times I’ve read an autism parent blog lamenting the tragedy of another birthday during which their child covered his/her ears and screamed at the Happy Birthday song, then proceeded to have a meltdown at the sensory overload and social overwhelm of the whole event.  In these parents’ narrative it is not the child who is the victim of the story, it’s mom and dad.  Poor mom and dad, who can’t even experience a proper birthday with their child.  These parents will go on to repeat the whole fiasco next year.  And they will grieve it.  Again.  And their child will suffer.  Again.  Folks, this is completely preventable.  It’s not your day, it’s your child’s day!  Stop singing Happy Birthday if your child hates it.  Stop inviting all these people over.  Figure out what works for your child to make it a special day and do that.

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My son does not recognize gifts. But he LOVES Target, so for one of his birthdays, we pasted Target logos all over his gifts to make them attractive to him. This is one tiny way we were able to adjust to make his day special.

I see it with other stuff too.  Trips to places the child is “supposed to” enjoy but doesn’t.  Child doesn’t want to sit on Santa’s lap.  He or she is screaming, self-injuring, melting down.  Mom is moaning to the internet about how hard it is, how terribly sad, how all the nice little neurotypicals waited happily in line, smiled big for Santa.  But your child didn’t.  Guess what mom?  Stop taking your child places he/she cannot tolerate and this won’t happen.  It’s that simple.  There was a family in an autism documentary I watched where the little boy’s favorite thing was to ride the city buses.  Every day after work his Dad took him to ride his favorite bus lines for a few hours.  That is what he loved, and so that is what they did together to connect and bond.  In the end, shouldn’t it be about our kids?  Stop making it all about you.  Yes, it’s hard sometimes.  You know what, parenting is hard.  Take care of yourself, seek out supports, but when it’s you and your child, structure your family in a way that accounts for your child’s individual needs, challenges, interests, and joys.

When I talk to parents of a newly diagnosed child, one of the first things I always try to impress upon them is this: adjust your expectations.  When you do, it has the power to change your entire outlook from a grief-centered perspective to a contented “this is our awesome family” perspective.  I suppose that is the basic message of the famous “Welcome to Holland” poem which is oft shared with parents of newly diagnosed kiddos.  And it really makes all the difference.  Don’t set yourself up for more grief, more disappointment.  Don’t make your child suffer for your own rigidity (hah- do you see the irony?).  Find a way to be flexible, to grow your parenting into something that fits with your kiddo.  Welcome to Holland.  It’s not Italy, but it can absolutely be great, if you would only give it a chance.

A Realm of Music

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My boy exists at once in overlapping realms.  He is here, but also in another place, a place where I cannot follow.  His realm is a realm of music.  As it overlays my own, I can sometimes glimpse its edges, sometimes make out a silhouette.  I catch something in the corner of my eye; I reach out and feel it like a mist against my hand before it slips away.

This is not about hearing and listening, this is not about sound or song.  This musical realm is so much greater than that.  It is, at its core, a place of vibration.  The vibrations are a music that my boy can feel, taste, touch, hear, and see.  It is a multisensory language in which he is perfectly fluent.  He can create it with his hands, his mouth, his feet.  He can chew it; he can pound it into vibrant existence; he can shout it, howl it, screech it; he can blow it, click it, whisper it.  He can measure it, map it, and sometimes he can use these calculations to approximate the verbal speech of my world.  Sometimes.  When the music moves him to do so.  Sometimes.

You hear him making strange and senseless noises, but I know different.  I hear him singing joyously the song of the microwave’s hum, of the vacuum’s roar, of the truck’s engine, of the chirp of someone’s cellphone, the shriek of the kitchen timer.

I see him chewing gravel and feeling, listening to the crackle and grind in his inner ear.  I see him dumping coffee beans on the floor to orchestrate a wildly raucous staccato, like heavy rain on a tin roof.  I see him slapping tiles and bricks and walls and windows, licking them too, in a symphony of feeling, hearing, tasting, seeing.

My boy is master of his realm.  He is its conductor, its composer, its musician, and often, its instrument.  He firmly rejects what does not belong in his song.  “Come sit,” we say, but his song is a song of movement.  “Eat this,” we say, but it doesn’t taste of his song, it does not crunch in his mouth like the percussion of his orchestra.  “Do this,” we say, but it is often irrelevant to his music at best, a painfully discordant note at worst.

Sometimes our world combines magically with his, playing a delightful harmony to his melody.  He joins joyously, laughingly, exuberantly with us.  He learns what we offer him, and uses it in his song.  His song grows with him and he is growing, growing.  He is blossoming.  We see him and he is rhapsodic, glorious, ebullient.

Never change, I think, never change, I pray.  You are perfect.  You are indomitable.  You are my own sweet swan song.  

Love

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All three kiddos

Sometimes I try to look inward and analyze my feelings for R.  My love for him is so intense it is almost painful at times- the kind of pain that is an echo of the fear of losing him, knowing it would rend me completely. This intensity of feeling is ever present when I think about R, but it’s not that way when I think of my other two children.  This has bothered me every time I get to that point in the inward analysis.  I try to dissect it, to understand it.  I think about my feelings for each of my children very carefully, and, I hope, objectively.  I always come to the conclusion that I love them each the same amount, I just love them each differently. but never less.  So why the difference in that sense of intensity when I think of R compared to my other two children?

When I sit down and really think of that overwhelming, intense feeling my love has for R, I realize I have felt it about my other children, during discrete periods of high stress when they were in some type of danger or distress.  I felt it for weeks when Mohammad was a newborn.  He had pyloric stenosis and was so sick, literally starving and shrinking before my eyes for his first weeks of life.  He was initially misdiagnosed and by the time they finally hospitalized him and figured out what was wrong he was so sick and dehydrated that they delayed surgery for 3 days to stabilize him because he wouldn’t have survived the stress of surgery otherwise.

For those tumultuous first two months of my older son’s life, my feelings of love had that same painful, overwhelming intensity that I associate with R.  In fact, when my second child, my daughter, was born 18 months after her older brother, I had a hard time bonding with her.  When I got pregnant with R a few years later I opened up to my midwife about the trouble I had bonding with my daughter when she was first born.  I remember telling her that I didn’t understand it- everything was so easy with my daughter compared to what happened with her older brother.  She was perfectly healthy, never even lost an ounce of her birth weight.  Everything went perfectly.  So why had it taken 6 weeks for me to bond with her?  Why had I felt so confused and apathetic?  My midwife suggested that that was just it.  My only association with a new baby was one of extremely high stress and intense emotion.  My normal meter for what it was like to have a newborn was very off, and it probably impacted me when I had my daughter.

I think the midwife was right.  And while it took a few weeks, one day, just overnight, something clicked and that solid mama bond formed with my daughter.

I’ve had those intense love feelings with my daughter too- times when she was in the ER after a bad fall or after having been very sick with one thing or another.  The same goes for my oldest son over the years.  But that intense-emotion thing is not my day-to-day feeling for them.   But it is for me with R.  And I am realizing that for years we’ve existed in that high-stakes, high stress, intense, overwhelming please-don’t let-him-be-hurt-please-don’t-take-him-from-us place with R.  He is vulnerable in so many ways that my other children aren’t.  I am constantly, yet often subconsciously, on alert for him.  He’s four and a half and I still wake in the middle of the night in that irrational half-asleep panic where I have to check his breathing to make sure he didn’t somehow stop breathing in his sleep.  This is something I did with all my kids when they were newborn babies.  One of those weird irrational new mom panic things.  But with R it never went away.  And it still hasn’t.

And I think it all just reflects where we are at with R.  That primal “mama bear” protective emotion is always going full throttle.  My feelings are so intense for him, so much I’m bursting at times and it hurts.  But I don’t love him more than my other children.  It’s just that place, that parent “mode” we go to to protect our young when we feel that they are threatened.  Only with most kids that mode is temporary, like using the 4 wheel drive to get out of the mud or drive through snow.  It’s not a mode you use all the time for most parents or with most kids.  But with R we are always there.

That’s how I see it anyway.  I wonder if it will lessen as he gets older and I don’t know.  I do know that I don’t see it as a bad thing.  It’s intense, but it also makes the good moments of each day (of which there are many!) shine so much brighter.  I hope as my other children grow up they see it for what it is and know without doubts that we love them just as much as their brother.  I think they do understand it right now, and I often see the same fierce, protective love in their own interactions with their brother.  Isn’t it funny how small children can understand effortlessly things that become a lot harder to understand when you’re older?  I hope this is an understanding they are able to hold on to.  I love them so much.  I am so proud of them.  Every single day.  Even when I’m grumpy and snappy.  Maybe especially then.  I don’t know if I would have been as gracious and sweet and thoughtful if I were in their shoes.  They amaze me, and maybe one day they will read this, in fact I hope they do.  I love you guys!

I Don’t Know.

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R throws his head back miserably and half-shouts, half-cries “Eeeeeeee!”  He throws his whole body backwards, landing hard, kicks his legs violently, angry-cries “eeeeeee,” “mmmmm”.  He flails his body over and over.  I try to hold him and he desperately presses his chin into my shoulder as hard as he can, jaw clenched, while he fusses miserably.  After a moment he kicks and screams and flails until I have to set him down again.  This goes on for nearly two hours, then off and on the rest of the day, interspersed with periods of crying.  Lately, about half of the days each week are bad days like this.

I don’t know what’s wrong.  I don’t know if his pain is physical or mental. I don’t know if this will be temporary or indefinite.  I don’t know if tomorrow will be better.  I don’t know if I should bring him to more doctors to get more opinions.  I don’t know if I should give him space or try to hold him despite his protestations.  I don’t know I don’t know I don’t know.

It has been about 2 months that R has been having these episodes.  At first we attributed it to an ear infection, but when that was treated the bad days continued.  Then we thought it was due to constipation.  But we addressed that and still the meltdowns and bad days continue.  We have analyzed his sleep, his medications, his diet, his stools, checked his ears and throat countless times.  He has dental work coming up. Maybe it’s dental pain.  Maybe he will feel better after.  But maybe not.  I don’t know.

I don’t know and I hate it.

Today

This morning my 6 year old daughter had her winter holiday concert at school.  My daughter, A, attends the same lower elementary school that R goes to.  The school goes from preschool through first grade, and A is in first grade, while R is a preschooler.  As I watched my daughter sing along with all the first graders before the rows of proud parents, a wave of sadness swept over me.  I don’t often feel sad about R.  But sometimes a sadness hits me, taking me unprepared, like this time.  The mother beside me had brought her toddler, perhaps 18 months old.  He was dancing to the music, pointing at the children, and trying to sing along.  It was unexpectedly painful seeing the one year old like that, doing things R can’t yet do, seeing my daughter having fun on stage and wondering if R will be able to do that in two years, when he’s her age.  I don’t normally allow myself to get caught up in the comparison trap.  In the beginning it hurt all the time seeing other children R’s age or younger doing so many things that were worlds away for him.  But over time I learned to focus on R exactly where he’s at, versus where other children are at, and to anchor myself in the present.  Yet sometimes it sneaks up on me.  Rationally I don’t think I need to be sad.  R is generally a very happy little boy.  If he doesn’t feel he’s missing out on things why should I?  But there is something inside that is sometimes quietly sad, just for a moment.  Always though, the sheer joy of R pulls me free of that sadness in a mighty, inescapable way.  This time was no different.  Just as that sadness had settled over me uninvited, as I felt the hot pressure of unwelcome tears held back, I heard his little voice.  In a crowded auditorium with over a hundred singing first graders and accompanying music on the loudspeaker I heard R’s voice raised in joyful stimmy chants.  A voice I would recognize anywhere.  At first I thought I must have imagined it, but then it came again and I turned my head to the sound, scanning rapidly for him.  I spotted him then, at the railing on the ledge overlooking the auditorium, held snugly in the arms of his morning aide.  His aide caught my eye and smiled and made her way with R closer to me.  I went to stand with them, said hello to R and gave him a kiss.  He was grinning and happily making his sweet noises.  His aide told me she wanted to show him his sister singing at the concert.  They stayed a few minutes, then, as R was growing restless, she took him back to his classroom.  Seeing that bright, happy little face, hearing R’s voice, it made my day and vanished the sadness utterly.

I found myself suddenly profoundly grateful.  R’s school feels like a family.  The fact that his aide thought to take him to watch his sister sing for a few minutes speaks to that.  They also take R on little trips to the main office and the nurse’s office just to visit with the staff there.  Another time they pulled A out of class to come outside and push R on the swing for a few minutes.  It’s so many little things, but what it adds up to is feeling like family.  And today that family gave me the reminder I needed.  There is nothing sad about today.  Today is a good day.  

Relationship Stages with the in-home Therapist

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R’s therapist, helping out on a trip to the zoo.  Only her arms shown here, to protect her privacy.

 

Stage One: She’s Cool

You’ve stopped cleaning before she comes.

You no longer feel compelled to prove how involved you are, and take the much needed period of respite while she’s there to do dishes, fold some laundry, or take a shower.

She doesn’t have to ask you where anything is or if it’s okay for her to do XYZ.  

Your husband has learned her name and recognizes her on sight.  This may seem like an odd one, but when you have a revolving door of therapists, many of whom will leave after just weeks or months to pursue other career goals, it happens.  


Stage Two: The Honeymoon

You can handle her coming over when your house is an epic disaster that you wouldn’t even let your other mom friends see, though you still apologize for the mess.  

You are fine with her seeing you in your grungy sweats and that comfy tee with the stains on it (no bra) while your hair is greasy because you haven’t showered in 3 days.

You can yell at your kids in front of her without feeling like a bad mom.  

Most of your neighbors know her by name.

You don’t mind it when she gives you unsolicited suggestions/parenting advice, even when you don’t agree.


Stage Three: She’s Family.

She has seen you in just a towel. (There is a reasonable explanation story for this).  

Your kids include her in the picture when making drawings of the family.   

She has met more of your neighbors than you have.

You let yourself have occasional mommy tantrums in front of her.

You sometimes feel annoyed by her in the same way your husband or kids sometimes annoy you.

Fall Update: lots of good stuff

It’s time for a happy post since my last one was a little sad and pissed off.  There is also tons to be happy about!  R is really growing and developing and it is so incredible to see.  Remember that little, awkward wave around his hip I saw him do for the first time in my last post?  Well he has continued to work on learning it with his school staff and he is rocking it these days!  Watch here!  

It’s beautiful fall here in New England.  Last year we went apple picking at a gorgeous farm in CT with family.  R was having a hard time with the unfamiliar environment.  He cried a lot at first, for an hour or so, but eventually settled down as long as I kept him in the carrier against my body.  At the very end he finally felt secure enough to get down and did run around for a few minutes before we left.  This year, in contrast, he didn’t cry at all.  Not a single tear.  And he did not need to be carried or comforted.  He fell in love with a 200 lb jumbo pumpkin, which he ran back to at every opportunity.  We finally snuck him away from it to the rows of apple trees, where he sprinted up and down and across the rows and threw himself into patches of long grass similar to how a kid jumps into a leaf pile.  He was all smiles and had a great time.



We also had R’s annual IEP meeting to review his current IEP and write up an updated one for this year.  We knew most of it would stay the same, with minor goal adjustments, but there was one significant change we wanted to make, and that was to request a 5th day of school for R.  Our school district’s special education preschool program is a 4-day program, Tuesday-Friday.  However, based on R’s high level of need, slow rate of progress, and pattern of regressions we and our consulting clinical neruopsych felt he belonged in a 5 day program.  The other issue was that the four day preschool program involved an integrated (half special needs kids, half typically developing) classroom.  However, R is not even in that classroom due to his higher needs.  Instead, he attends the substantially separate intensive needs classroom, which is for children with intensive needs from preschool – 1st grade, and, due to including older students, operates 5 days a week.  So his own classroom would already be open and staffed on that 5th day (Mondays) and we felt there was no reasonable excuse for not giving him the 5th day of services.  We sent a written request detailing our reasoning 2 weeks before the IEP meeting.  A few days before the meeting my son’s teacher told me, off the record, that when the district asked her and my son’s ABA supervisor about the request they had both strongly advocated for it and stated they believed he needed it.  This is not the first time my son’s teacher has advocated for him with the district, and it really warmed my heart.  It can be tricky position for teachers to be in, and many prefer not to entangle themselves.  The fact that she speaks up for my son means the world.  On the day of the meeting we nervously awaited the district’s decision.  I thought they would want a round table discussion of it, and that we’d have to defend our reasoning.  But instead, the district chairperson just told us that when the team discussed it they were overwhelmingly in favor of it and so we were going to receive the 5th day for him.  It was done!  No argument, no fighting the district.  Our district has been pretty incredible from the start, but I also think we really owe his team for speaking up on our behalf about what’s best for R.



So R is now a 5-day student!  We are seeing so many wonderful things as he learns at school.  His teacher sends a lot of videos and pictures of R working at school like some of the ones below.  R is learning to hold a glue stick, and to smear it with hand over hand help.  He is learning to scribble with a chunky crayon or marker with prompting and hand positioning.  He can now stack 3 blocks independently, use a shape sorter, place a single inset puzzle piece, wave in response to a prompt (with model), and use about 8-10 different PECS cards.  With many of the new things he is learning he gets this adorable goofy grin on his face because he knows he is doing it.


Some of the toy skills have carried over to home and become new preferred activities now that he knows how to do them.  He gets a lot of hand over hand help to complete artwork activities at school, but we hang each one up on the wall and he loves them.  He stares at them while he eats (they are in the kitchen), and he will go stand on a chair and touch and bang on them with a big grin on his face.

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touching his artwork

R has also learned how to have a tantrum.  He previously had never tantrumed in his life.  He had sensory and anxiety based meltdowns, plenty of them, but he had never deliberately thrown a tantrum until just a few weeks ago.  On the one hand we were excited to see him take this developmental leap.  It means he has realized that his parents can control certain things and that he can affect our behavior with his own, or simply express his anger that we are not giving him what he wants.  I think in the past he did not realize we had the power to give or withhold.  If a preferred snack was not offered to him, it simply didn’t exist and that was sad but it was no one’s fault.  Now he seems to have realized that actually if he doesn’t receive it, it is because mom and dad have not given it to him, even though we could, and it’s our fault and it’s not fair!  The development is awesome.  Dealing with the resulting tantrums not so much!  

Wave

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R. thinking serious thoughts

My son’s face crumples, his mouth forms a huge trembling “O,” a silent, gasping sob.  He is trying so hard not to lose control, not to succumb to the terror and anxiety that is threatening to take over.  I can see him swallowing it, fighting with all he has.  A few audible cries escape, he chokes them back, breathing hard, eyes wild.  He is tearing my heart into pieces.  I hate that he has to feel this way.  I hate that there is no easy way to reassure him, that words I might speak cannot be understood, especially not right now in the grip of his overwhelm and paralytic anxiety.  I say the words anyway, because I don’t know what else to do.  All I can do is be there with him, and do my best to get him out of this place as quickly as possible.  I put on my bitch face.  I give short terse answers to the nurse and make it clear with my attitude that we need to speed things up.

The doctor arrives, a fresh faced med student in tow.  My anguish, worry, and protective feelings for my son seem to morph further and further into anger, which is so much easier to channel, because anger means I can lash out, while the other feelings make me helpless.  I internally remind myself how much I hate med students and their foolish questions and can’t they see this child is being tortured by this fucking place?  Can’t they practice playing doctor with the parent of some other, undistressed child?  Some child that is not mentally and emotionally imploding with anguish that mounts for every additional second we spend here?

“Rough morning?”  The doctor asks kindly.
“No,” I say, “it’s only because we’re here.  He’s a very happy child when we are not around doctors.”  The med student attempts to ask me a few inane questions.
“When did the sleeping trouble begin?”
“This is all in his record,” I say shortly, making it clear I am not here for her to practice on.  The doctor takes over, asking the pertinent questions, the ones we are actually there for, which will ensure that my child continues to receive refills on his medications.  R. is losing his ability to hold back the tidal wave of panic and begins sobbing and hyperventilating in earnest.  The doctor tries to show him a toy, which he politely hands directly to me in between gasps and cries.  I know he is thinking “maybe if I give the object to the other adult I can finally go.”  Therapy has taught him that seemingly meaningless actions might be rewarded with the thing he wants, in this case, to get out of this awful place.  The knowledge that he thinks perhaps some performance will end this torture makes me feel even more upset.  The doctor doesn’t understand and I try to explain “he thinks you want him to give it to me, like in ABA.”  She then wants to discuss his therapies and progress, which really has nothing to do with her role as his sleep specialist.  I give short, irritable answers until she gets the hint and wraps up the appointment.  I get R. out of there as fast as possible.  On the grass outside he drops to the ground and sobs.  I hold him, on the grass beside the busy walkway.  Dozens of people coming and going turn to stare.  I don’t give a fuck.  We sit on the grass and cry together.  Then I carry him to the car, wipe our faces, and tell him, “School!  We can go school now!  See Ms. S., See Ms. C!”  A trembling smile makes it’s way across his face.  R loves school better than anything else in the world these days.  We pull up to school and have our calm faces on.  A fading tear stain across his cheek is the only remaining evidence of R’s ordeal.  A staff person takes R’s hand, begins walking him toward his classroom.  “Bye, R!” I call out.  He doesn’t turn and look, but I see his free hand raise just an inch or so, a quick, awkward movement by his hip.  But I immediately know he is trying to wave, which is something he’s working on at school.  I am blown away.  He’s the strongest, bravest person I know.  I just wish he didn’t have to be.

Dear NT psychologist: Look Me in the Eye

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Photo taken on a beautiful spring day in April.  My boy adores the swing!

We recently participated in a research study about how children with intellectual and developmental disabilities and their families experience feeding and mealtime issues.  To be eligible for participation in the study, the child must meet the criteria for ID (intellectual disability, formerly known as mental retardation).  Along with his ASD diagnosis, R carries a DSM-V diagnosis of GDD (Global Developmental Delay), which is the DSM equivalent of ID for children under the age of 5.  We signed up for the research study knowing he would qualify.

At the first meeting with the research team, they had their own clinical psychologist confirm his eligibility by conducting several cognitive tests (the same kinds of tests R has had administered countless times in the past, and through which his original GDD diagnosis was ascertained).

When the psychologist and her assistant finished, there was much whispering about the final scores and furtive glances my way.  I caught the occasional ominous sounding word and gathered that he had obviously met criteria by a large margin.  The psychologist and her assistant clearly did not want me to overhear how “bad” his scores were.  After finishing up the paperwork from the testing portion the psychologist gave me an apologetic face as she quickly confirmed “so yes he meets criteria,” then awkwardly excused herself and left our home, as her part was finished.  Her entire demeanor was strained, apologetic, and awkward.  She practically screamed non-verbally “Please don’t ask me for a copy of his scores!  I do not want to see your reaction to them!”  The assistant quickly squirreled away the cognitive testing packet and scores and hurriedly moved on to explaining how the study itself would be conducted.

This is not the first time we have seen this type of reaction from professionals in the field.  It angers and insults me every time.  Do they think we are unaware of our son’s delays?  Given his slew of diagnoses, doesn’t it occur to them that we’ve been looking at scores and reports for 2 years now and there is nothing new about it?  Yes, we know our son tests below the first percentile in every single developmental category.  Yes, we know his cognitive skills are estimated at about a 9 month old level. Yes we know that he has no measurable (key word measurable) receptive language, no consistent words, and few functional communication skills.  Yes we know that he still cannot use a utensil, or roll a ball, let alone throw, kick, or catch one.  We know all of this.  Much of it is burned into my brain, an utterly useless list of taunting “can’t”s, a litany ground into us every 6 months or so when yet another evaluation is proposed for one thing or another.

It is insulting that these people think to spare us.  Not only because of the implied ignorance on our part, but because it also implies that there is something very sad about our child, that surely we couldn’t handle these facts emotionally as his parents.  Sometimes it is sad.  Sometimes it does hurt.  But our son is just another kind of human.  As I tell my children, there are so many ways to be a human.  This is his way.  It does not make him less.  It does not make him a tragedy.  It does not make his future any less bright.  Like all children, and I will say again ALL CHILDREN, he has limitless potential.  Limitless.

I like a psychologist, doctor, teacher, or therapist that can look me straight in the eye and tell me matter-of-factly what the results of the evaluation are.  Then move on to what that means for how we are going to tweak our plan of care and educational goals for R.  These tests aren’t about defining R.  These tests are simply point-in-time macro-scale snapshots of his development.  That is it.  There is no reason to tip-toe around me when you evaluate my child and behave as if this silly piece of paper in your hand has doomed him for life.

You know what that piece of paper does not show?  All the things he will do in a more comfortable environment among familiar people.  All the functional things he does, in his own unique unorthodox way, that you would not be able to translate but those who know him closely could.  All the things he understands but cannot show his understanding of.  All the things he is learning slowly in a particular way, but which he cannot yet generalize to you and your slightly different testing materials.  All the things he does spectacularly well that the test-makers never thought to include as a skill– such as unscrewing light bulbs, scaling refrigerators, and carefully blowing extraordinarily long strings of spit bubbles that don’t fall apart.  I mean really, imagine if the test read “Can your child unscrew 3 light bulbs?” Instead of “Can your child stack 3 blocks?”  And really, the light bulb thing is a major feat, the product of almost 2 years of OT for fine motor.  There was a time, just 6 months ago, when our boy could not unscrew a simple child-friendly top on an infant/toddler toy, let alone a light bulb from a fixture!

That piece of paper also does not show the laughter.  The smiles.  The adorable dimples.  The joy; my God the joy!  This is a joyful child.  This child is going places.  We don’t know where, and it is sure to be somewhere unconventional, but we believe in him and we know when he gets there it’s going to be amazing.