Autism Acceptance Month

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Reza (age 6) loves being pushed on the swing

I originally posted this on Facebook and have been meaning to add it here on my blog. Happy April!

It’s Autism Acceptance month and I want to tell you about autism at our house. I’ve had the hardest time writing this because I don’t want to sugarcoat it and ignore the struggles, but I also want you to understand how amazing it is at the same time.

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headphones!

Autism at our house is getting to witness pure joy, the kind of untainted undiluted joy the rest of us can never quite reach. But my son experiences it daily. Autism is dimples and squeals and chanted echolalic songs. Autism is music and vibration all over our house and everywhere we go. Tapping it, tasting it. It’s his language, the one that comes naturally to him unlike ours. Autism is movement. It’s running free, climbing high, it’s bare feet and unashamed nudity as the world rushes by and he cants his head to capture the dizzying beauty in his peripheral vision. Autism is being hand-led to whatever he needs all over the house. Autism is him taking my hand to run it over his skin, his way of asking me to lightly scratch his back and arms. Autism is the way he sometimes looks into my eyes, and it’s so rare that it feels like a jolt to my heart, like I can’t even breathe because it’s so intense. Autism is feeling over the moon with pride and joy every time he conquers something new, no matter how small or odd it may seem to an outsider.

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Rain dance

 

But autism is also anxiety and sensory overload. It’s him not understanding or feeling in control of what’s happening to him. It’s melting down with no control over the spiral, lashing out with teeth and flailing limbs, it’s banging his head. It’s being awake for days. It’s an inability to trust unfamiliar foods or tolerate triggering textures. It’s working ten times as hard as other children but still falling years behind them in developmental and academic skills.

 

 

 

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singing to the mountains

Autism isn’t easy. But it is worth it. My son is the brightest light in any room. His eyes are full of stars and I just wish I could see what he sees. He is a six year old who has never performed a deliberately malicious act in his entire life. Neurotypical kids do mean things deliberately just to be mean from the moment they figure it out as little toddlers. It’s heady, a rush. But Reza never has. It doesn’t even occur to him. He’s the purest most beautiful soul I’ve ever met. Even when he’s lashing out in a meltdown, kicking and biting, it’s never malicious. He’s never trying to hurt anyone. He’s panicking and terrified and trying to rescue himself.

He’s so strong and so much fun to be around, even when he’s driving us nuts he still makes me smile.

 

 

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Reza on his 6th birthday

A world without autism would be such a loss. Like sucking the light and color out of our human diversity.

Autism is hard. I wish my son didn’t have to go through its hardships. But autism is who he is, he is Autistic. It’s what makes him shine so bright, no matter the difficulties along the way.

At our house, autism is celebrated, and autism is home.

I Love You

rezanewestIf you know Reza in person or have followed my blog at all, you’ll know he loves to climb and can scale just about anything.  He enjoys climbing in our garage and we usually let him roam in there with the interconnecting door open so we can check on him every few minutes.

Yesterday while he was playing in there we suddenly heard panicked cries.  My husband ran in to see what was wrong, but, at first, couldn’t see Reza anywhere.  He followed the sound of the cries to the window, where Reza was hanging by his fingertips from the lower ledge on the outside of the garage!  Apparently the window had been open, and he pushed the screen out and tried to climb down but got scared and stuck.  When we got close enough to help, we realized Reza was crying “I love you, I love you, I love you!”

We reflected afterwards that Reza probably associates those words with being hugged, being held, and feeling safe.  We say it to him over and over in that context of physically enveloping him in our arms and our safety and security.  So when he was hanging there, terrified and needing to be hugged, held, and safe, he cried out “I love you!” as his plea.

I cried a little.  I wonder if he’s internalized the meaning of “I love you” both in that especially literal Autistic way, but also in its abstract sense.

Love this little guy so much.

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.  

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.

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!  

The Notorious(ly elusive) S-L-E-E-P

Note: When you have a kid that doesn’t sleep, sleep is something to document.  So we have a bunch of sleep pictures of R.  This post will contain some of my favorites.  Enjoy. 🙂

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It’s 3am.  R is giggling and bouncing on his knees on the bed.  He pauses, throws his head back, gazes open mouthed upwards to something my eyes don’t discern, then laughs and resumes bouncing on his knees.  He has been awake since 11:30pm, after having slept just three and a half hours.  He will stay awake the rest of the night, and is still awake at the time of my writing this, 9am the next morning.  This despite taking enough prescription sleeping medication to “knock out a typically developing three year old for two days straight,” as R’s rather humorous but blunt sleep specialist put it.

When we first began to see sleep difficulty with R, his Developmental Pediatrician at the autism clinic where he is followed told us that Autistic brains appear to simply not require as much sleep as neurotypical ones.  But even given that reduced requirement, around his 2nd birthday, R began sleeping drastically less than is safe or healthy for a young child.

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It started innocently enough.  A bedtime that crept gradually later and later, lulling us with a sense of normalcy.  Until one day it occurred to me that he was going to bed no earlier than midnight, and that we didn’t know any other children that slept that late and had already dropped their naps as he had!  Then came the night waking.  He would wake in the middle of the night full of energy as if it were morning.  He would play for a while, and eventually fall back asleep.  When we first began to have concerns about his sleep, he was getting a total of about 9 broken hours per night.  At his age at the time, it was recommended that children sleep at least 12 hours.  We shared our concerns with his DP, who gave us the tidbit about Autistic brains, and advised trying Melatonin, an over-the-counter sleep aid that helps with falling asleep, but she was not overly concerned.  From where I sit now, I can see why.  I would LOVE to see R get 9 hours a night at this point.

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We did begin Melatonin, which helped with the length of time it took him to fall asleep, but it didn’t help him stay asleep.  As time passed, his sleep grew progressively worse.  He was sleeping from midnight to 2am, then staying awake from 2-6am, then sleeping 6-8am.  He was getting a total of 4-5 broken hours of sleep, and still not napping during the day.   He was two, and supposed to be getting 11-14 hours of sleep per 24 hour period.  After a few months of this his DP agreed that he needed medication for sleep.  We were referred to a sleep specialist and R was started on Clonidine, a blood pressure medication used off label to treat ADHD and sleep disorders in children.

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At first, Clonidine was amazing.  He was sleeping about 9 hours per night while on it, about double what he would get off of it.  We also found that it reduced some of his compulsive sensory seeking.  Prior to Clonidine, R had a compulsive need to run constantly.  He would run circuits around our block, over and over, throughout the day.  One day we decided to calculate his mileage, and discovered that at 2 years old, he was running more than 2 miles every day!  After starting Clonidine this reduced dramatically, down to 1/4 mile or less per day.  Yet his mood and energy level remained high.  He was not tired or slowed down, he just didn’t need to compulsively run anymore.

About a month after starting Clonidine, his sleep began to decline again.  The doctor upped his dose.  Two months later it began to decline again, and his dose was increased again.  This would go on to happen 3 more times over the next year.  Now at age 3, his dose is about 8x higher than it was when we started Clonidine (he was started on 1/4 of a tablet, and now takes 1.5 to 2 tablets per night).  During his most recent sleep regression, about 2 months ago, the doctor not only increased his Clonidine dosage to what he takes now, but also added a prescription for Trazodone.  With his Melatonin, Clonidine, and Trazodone, we were administering 5 pills total each night…to a 3 year old.  Have you ever tried getting a 3 year old to take PILLS, not liquid medicine, but actual pills?  Now imagine that he has special needs, cannot understand what is said to him, and due to his feeding disorder cannot tolerate any of the things usually used to disguise medication for children (applesauce, chocolate pudding, chocolate milk, juice, etc).  It is no easy task..

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Trazodone did not go well for R.  We would find that it worked great for about 3 days, and then seemed to accumulate in his system to where by day 4 we were starting to see moodiness and exhaustion during the day, like a hangover.  Days 5 and 6 would be absolutely miserable.  By day 7 my husband and I would both agree we just couldn’t give it to him that night.  So then he wouldn’t sleep well because he wasn’t getting the additional medication, but at least he was happy.  For a while we tried cycling the Trazodone- 3 days on, 3 days off.  But that had inconsistent results.  We finally decided it wasn’t worth whatever extra sleep he was getting and stopped giving it to him.  Sleep isn’t perfect right now, he has his all-nighters like last night, but he also has several good nights per week, and for now this is what’s working best for him.

Ahh sleep.. Beautiful, elusive, sleep.  One day we will catch you. 🙂

School is AWESOME

It’s been two months- TWO MONTHS!  Since R started school.  I’ve written a lot about our efforts to transition R to school prior to his start date due to his severe anxiety- a process we spent 5 months on- and which was wildly successful.  You can read about it here, and about his resulting fabulous first week of school here.  I was hesitant after that amazing first week to write more about how great school was going, in fear of somehow jinxing it.  But the past two months have sped by and there is so much to share.  R has learned more skills in the past 2 months at school than he learned in the previous 18 months of full time in-home therapies (ABA, ST, OT, DT).  Here are a few of the highlights:

R is understanding and able to use a first-then board

R is continuing to learn to use PECS

R learned how to turn a container over to dump the contents

After initial help with hand placement, R is able to hold a bingo dobber (kind of like a chubby marker) and can independently make about 3 dots with it

R learned to jump with two feet (!!!!!!)

R learned how to clap his hands (!!!), and can *sometimes* respond to the receptive direction “clap hands” (the data says 8%, I’m just excited that he understands the language!)

R tolerated exploring paints, holding the brush, and making some paint marks with hand-over-hand support!  A BIG DEAL because he has been terrified of paint/art stuff prior to this

And just this week, R scribbled with a crayon for a moment all by himself for the first time!

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R exploring paints at school

I feel like R is truly in the best possible environment at school and that is why he is thriving.  He is supported by such an incredible team of dedicated, caring, skilled individuals.  I think what truly makes it so successful is that the team all work together.  There is so much carry-over.  His ST, OT, sped teacher, and aides are always sharing information, ideas, and tips, often observing each other working with R, and so it’s just a really well rounded team approach to each challenge R is working on.  We are currently in the process of finding out if R needs PT added on.  His teacher and OT have both shared some concerns with the school PT, and I sent a request to evaluate for PT along with some of my own concerns.  I love knowing that everyone at school wants what is best for R, not what is cheapest for the budget.  The other thing that I really appreciate is seeing how much they all care about R.  It is written all over their faces that they adore him.  I would have expected kindness and professionalism, but it is clear that beyond that his teacher and aides truly seem to love him, and R seems to love them too.  He is almost always very excited to arrive at school, and is often reluctant to leave.

 

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R’s Valentines baggy from school
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Valentine from R’s teacher to him

Seeing how much he has flourished in just 2 months, I can’t wait to update at 6 months or a year!  Here’s to hoping for many more great things to come. ❤