J-Bear and Me

learning to navigate the world, j-bear style

Tag: autism (page 1 of 14)

Sweet Baby Boy

You never think on the day you give birth to your child that scary things might await. You’re just so amazed by them, so relieved they made it safely into this world and so grateful to have them in your arms. You snuggle them, you kiss them, you count their fingers and toes and marvel at the miracle of their existence.

image is of a mom holding her dark haired newborn, smiling at his handsome faceYears wear on but the wonder never fully fades. Your child grows, changes, begins to show you who they are in every way. They take you on this incredible journey that you could never have hoped to plan. There are massive highs and desperate lows, all of which tend to fade in the light of just enjoying the presence of the little life whose hand holds onto your own.

Then things happen that no one might want to talk about. Things happen that the world prefers not to face. I wish the choice was in our hands, what we could and could not deal with, but to have that choice is not something we necessarily can be trusted with.

The day J was diagnosed as autistic, it did not hurt. It was a confirmation of something that we’d been discussing among ourselves and his providers for a little while. There was no shock, no dismay and no sorrow. This was a door opening, allowing us to see what we would need to help J be everything he is destined to be. His neurology is different and requires different supports. It is our job to raise him in understanding his neurology and how to work with it. What more could a parent wish than for their child to be confident within their own skin?

Something more is there, though. Something is in J’s wiring that might be beyond the autism. Something that the world doesn’t want to face. It doesn’t carry with it cute pictures of little children in puzzle-piece adorned clothing. It does not wear a month of rabid ‘awareness’ demands with brightly colored advertising splashed across billboards, televisions and print. It is something that is buried away thanks to generations upon generations deciding that we do not talk about mental health.

Those generations failed my parents. They failed my brother. j and blossom in the backseat of the car, j in his carseat and blossom sniffing his hand

They will not fail J.

Children as well as adults can struggle with mental illness. According to the National Alliance on Mental Health (NAMI), 20% of children ages 13-18 have some form of mental illness. One in FIVE. This is not even looking at younger children like J-Bear.

Why aren’t we, as a nation, talking about this?

Why are we avoiding this? Why is it met with gasps and discomfort when I mention that J is in inpatient care over needs related to this? If I told the world he had a physical illness, I would be encouraged to take him to the finest specialists and to spare no expense on his care. I mention it is likely mental illness co-morbid with autism and the silence grows deafening outside our small, amazing internet community and the small community we’ve drawn together as J has grown.

We stand a chance to raise a new generation not with shame but with the understanding that their mental illness is valid. That they deserve as much care and consideration as any other person with an illness would receive. They are not to be mocked, derided or pushed aside because it makes someone else uncomfortable. We’ve lost humanity in terms of how we deal with the mentally ill. Why the hell aren’t we fighting to get it back?

Right now, we are in the midst of Mental Health Month. Will you stand beside J-Bear and all of the rest of us who struggle and help end the stigma? Please check out NAMI’s site which I linked under Mental Health Month above.

We will get him through this. He will come home ever so soon able to enjoy his life rather than be in this constant cycle of scary impulses and overwhelming emotion. He will be able to enjoy his time with his beautiful Blossom girl and be able to have fun at school again.

I can’t wait. Let’s make this world better for him and his peers while we’re at it.

Openness

These past two weeks have had a theme, I think. That theme is building.

The meeting with J’s new doc started the building process of a new path to help J garner the most appropriate tools to assist him for where he is at today rather than where he was at when he was three years old. It is going to be a process, likely a long one at that, but it is laid out and we all know what it is we want and how to focus on getting it. Everyone involved already and who will be involved in future will be focused on J’s best interests first and foremost. There will be no veering from him being the center of his care rather than an arbitrary rule book decided by others who have never met him. He will be respected, loved and guided so he can grow and thrive. It’s a situation that fills me with hope, anxiety, relief and optimism all at once: Anxiety over new things yet to begin; hope, relief and optimism that we have opportunities to focus on what is most important to us.

That meeting rolled nicely into a long, open conversation with the founder of APAW on Monday. She is remarkably easy to talk to and we discussed how things should progress in terms of J’s future partner. The open honesty with which she and her organization conduct their business should not surprise me by now and yet it does. If I ask a question, I am not given a run around. I am given a clear and honest answer. It does not matter if that answer is one I like or do not like, it is the truth and it is what it is for good reasons they are always open to share.

When we began the efforts towards a service dog back in 2013 there was never a feeling of “wow, these people actually care about my child”. We were just another client of many and shuffled through like we were checking out at the grocery store. We filled out forms, we did as we were told, we shuffled along ignorant that things did not have to be this way. There were only a few moments during training where it seemed like J mattered to anyone but us, despite his worshipful views of some of them. The on the ground training staff… Well, I can’t blame them. When you’re moving that many dogs, it’s hard to get to know every client deeply. That’s not on them. They don’t run the show.  Their big hearts can only do so much at once.

The difference between that and now blows me away.

black poodle puppy

Eclipse as a young pup. APAW poodle in training. Photo courtesy of APAW’s website

The focus of our conversation was dogs, of course, but also J-Bear. It was as meaningful to her as it is to me making sure that what is decided upon in terms of his future partner meets his needs. His healthy understanding of what is going on is not an added bonus now, it is an essential part of the process. His hurt does not mean nothing to them. His concrete manner of learning things is not disregarded. I didn’t have to bring some of my concerns up, they were anticipated and answered before I could because she, the founder, saw them.

So there’s a plan.

The first step will be to have some poodle weekenders come stay with us at our home. These are poodles on retreat. I have already been teaching J that sometimes, poodles need a break from poodle house and they want to come vacation with us. They hang out with us, he can play with them but they are not forever dogs. They visit, but they don’t get to do things like cuddle in bed with him or go to school necessarily. They come, we have fun for a few days and then they go back to their house. This is a process we hope to start this weekend and see how he manages. From here, we can work towards all future steps which will be determined based on how he manages over these visits. Right now, like any five-year-old, he’s pretty excited about a poodle visit! He loves poodle house (his name for APAW) and it will be fun for him to have one to one time with a poodle.

If this works and J adapts to this, fantastic! If this does not work, we have learned that too and we can move on with future planning from there.

Do I think it will work? I think it has a strong chance. He has a beginning grasp on the concept of what we’re doing thanks to him being a frequent guest at Grandma and Grandpa’s house. The whole process is being presented to him very differently than how Brookie was, too. Everything related to the dog is out in the center of our home now. He will be in the loop on when to expect there to be a dog, when to not expect there to be a dog and most importantly whether or not to expect a dog’s (any dog, not necessarily a specific dog) return. We have firm answers now that he can rely on.  It’s miles above what we went through last year.

Am I ready for it to fail? I prepare for the worst while planning for the best. If this goes poorly after a couple of trials, since one is never quite enough to get a full picture with J, we’ll not push him further and we’ll work on a new plan. We have the luxury of not needing to hurry. He needs a partner but if the right one isn’t ready yet, we’re able to sustain him until that day. The right one is always worth waiting for and always worth working for. We are building towards a bright future and are happy to be laying foundations with care alongside tremendous people. Things are looking bright!

 

Oh No, Not Medication!

Friday we met with a new neurodevelopmental pediatrician for J-Bear. This is the doctor that follows his autism and his development rather than treats his physical health. She is on his team to keep him growing in the best way he is able cognitively, emotionally and mentally. It was a great visit and we covered a lot of ground about the inner workings of a J. He fell in love with her welcoming, fantastic office. This doctor knows her typical patients, let me tell you. The office was quiet, the colors were peaceful but not glaring and the lighting perfectly right. Large Yogibo beanbags peppered each of the rooms and there were plenty of toys for hands big and small to keep calm with. J was in heaven.

The more we all talked as J played and engaged on his terms, the more we realized some things have been long-term issues without resolution. The largest of these issues is sleep. J does not sleep well on his own. He cannot even sleep by himself, for starters. He has to have another human beside him to help him allow his body to go to sleep. He does not sleep through the night with ease and even when he is sleeping he moves constantly. It’s like he runs miles in his sleep, I swear. This leads to exhaustion and a shortened fuse every single day for this poor kid.

We tried melatonin and for our trouble got night terrors. We tried weighted blankets, which give marginal success until he kicks them off as he overheats easily. We tried a dog and though she could help about half the time, he could get overstimulated by her presence though she sure did try. We’ve changed lighting, we’ve changed routines, we’ve changed everything we could think of… Still, sleep is completely elusive for this poor kid*.

There was much discussion and we came to the conclusion that medication is in J’s best interest.

People do not like to consider medication for anything but the strictly physical. I remember in August of 2011 being at a point where I just actually wanted my life to end. I was in so much mental pain and in such a deep state of being unable to escape the symptoms of what turned out to be complex PTSD that I actually thought ending my life would be better for all sides involved, even my then one year old son. Disgusting and scary, right? Medication was the start to saving my life and yet, there are those who would mock medication for mental illness. There are those in my life who did use my turning to medication as a weapon. There are people who will judge harshly over this choice too I am sure.

If J had an ailment that disrupted some physical process like insulin production, the ability of his blood to clot or not clot, etc., no one would bat a lash at him taking medication to keep his body healthy and able to function. That is what we were hoping for him now. The body cannot function without reasonable amounts of sleep, good sleep, and we’re working hard to help him get that so he can feel better in his own skin. The pros and cons were weighed. The pros heavily won the day.

The dose is quite, quite tiny. The doctor jokingly said he pretty much just needs to stand near the bottle and inhale, the dose is so small. She’s not far off on that description! We’re starting small and seeing how it evens out over time in his system and if this is enough. It’s been but two nights and things have been different in moderate steps. He sleeps better, but still not through the night. He is calmer during the day, but that could either be from what sleep he gets or from feeling mellowed by the medication as his body adjusts to it.

It’s been nice to see him being more able to work through struggles the past couple of days. I am hopeful that this is a sign of things to come. Yesterday, he helped me do a few things for my mother. He made his pop-pop laugh and his nonie smile. He swept their floor, showed them how to use a swiffer duster and generally was charming. This was something that was much harder but a couple of days before.

Now, medication is not our only answer for J. Ever. We are adding in some therapy that hopefully will fall in line with therapy he had great success with as an under 3-year-old and of course in due time his service dog will arrive. He’s not a boy for whom one single tool will aid all situations. He will always need to keep that toolbox full and it’s my job to make sure that it is just that, full and at the ready.

 

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*= So funny story: if you want to see J sleep like a total dream, like he’s never had a single issue with sleep in his life, put him on a cruise ship in rough waters. The sensory stimulation alone sets his entire body at such peace and rest. It’s not something one can replicate on land easily but hey, maybe this means he’s meant for a life on the high seas!

A Complicated Dance

This year, particularly the past several months, have been a complicated dance for J. He has taken steps backward that have at times overwhelmed us, then taken steps forward that are major victories what feels like moments later.

The pattern has been there his whole life. It is currently amplified by loss and recovery from said loss, but it is the existing pattern that is how J grows. The gains make that clear, but the steps backward are sometimes quite scary to witness.

When J was 2, his main method of play was not play as most would recognize it in children. He lined up his toys across the room, sometimes attempting to do so across the entire apartment. There were trains, cars, whatever was around just got lined up. You did not mess with the lines. Lines were love, lines were good… We left them alone, and we let him find his peace and order in them. It took him a lot of time, encouragement and work to learn that letting lines go was okay. He could return to them whenever he needed their comfort, but they did not have to exist all the time. He built his confidence and his skills and slowly, lines were no longer a major part of our lives.

The lines have returned. They creep in slowly, created with boxes or trains with an odd other toy or two thrown in. There is no moving these lines without his involvement. The fearful rigidity is not there but the anxiety is still palpable. Now, they involve elaborate scenes invented in his own mine integrating beloved cartoons and songs, but the main purpose is the same: comfort and predictability.

The first time I noticed their return I have to admit I was sad. It is easy to take something that seems a deeper sign of regression as bad news. The longer I watch and listen, allowing him to show me what he is doing the more things are falling into place. I have to understand the framework for the behavior. This isn’t a loss of hard-fought skills but a return to a safe place, when life was different and there was no heartache. This is like him bringing out Miss Kitty or any other stuffie… it is just behavior rather than items.

He uses these behaviors as a safe place; a sanctuary in which he can recover his peace. When that peace is felt, he is able to reach out and work on new skills, new adventures and new strengths. He has learned to read not one but two words, “go” and “stop”. When at home, he is stringing more and more words together with increasing confidence. We are able to sometimes even work on simple abstracts like what we feel occasionally which is huge for a little boy who is very, very concrete in his thinking.

It has always been firmly believed by all of us that he knows more than he imparts easily to most people. This all reinforces this belief. The full comprehension of what has happened may not be there, but he understands enough of how he feels about it to cope. He understands that this half of the year has been a lot of change and some of it quite upsetting and scary, yet he sought out a way to cope and created his own calm. It is not always a lasting peace and we have a lot still to work on to help him make it last, but it is a start.

He, with the help of the world that surrounds him, is laying a strong foundation on which to build up from in the year(s) to come. He is taking that which was taught to him in his earliest days and applying it. It’s a wonder to behold and I feel very, very lucky to be a part of his winding, crazy adventure as it unfolds. Yes, our hearts were sorely and unfairly broken but most of all his sweet, determined spirit remains intact.

I am so, so proud of my boy.

I didn’t know how to tell him.

How do you tell a child something so abstract, especially when said child works solely in concrete terms. If he cannot see it, feel it, smell it, taste it, chase it… If he cannot physically experience what you are discussing the subject can be very hard for him. He experiences the world with his whole body and yet, here I was having to explain something that would touch only his heart.

a stuffed golden retriever wearing a crocheted red service vest

little missie b

After she left, J and I went to Build-a-Bear Workshop. He chose a golden retriever to stuff and she came in a cardboard dog house. She has her own food bowl, her own leash, so it was like caring for his girl while his girl was gone. A young lady knit pretend SD vests for stuffed animals and we bought one from her fundraiser. It fit this stuffed animal well. He was excited that his little version had a “jama”, short for “pajama”, which is what he called her working vest. Now she really was a little version of his best friend.

Last night, as J and I were sitting in the bed, I tried to gently talk to him about this big change. This sad news. My words were heard, that I know, but it will take time for him to process. We pet his stuffed golden, who proudly still wore her “jama”, and I carefully took the “jama” off. I told him she never has to work anymore, she can just play now. He hugged her tight and though he watched me put the play vest away, he let me do so.

He knows. The crack in my heart will never be right, seeing that.

Miss Kitty has been working overtime this summer. His beloved black and white stuffed cat along with a few other choice stuffed animals and the little stuffed golden are hollow substitutes for a best friend but he is trying. Every day, he is battling. It is gut wrenching to watch a child fight to feel safe, comfortable, relaxed and at peace. I need to chase his peace with all I have within me. If his mother cannot find him hope and calm, who can?

Candle in a Hurricane

It has been a long, hard summer.

The problems started in the spring. Brooklyn got so sick, then on June 14th she returned to 4 Paws for Ability. She is still there today. The turmoil that caused for J is powerful. He has been extremely aware of where I am and what I am doing since then, allowing no other to put him to bed unless I am physically not there… and even then, it is only when he is at his grandparents that it is allowed. He is stressed about routine changes and about things he trusts to be there just not being there. There are not words said to express this, it manifests in near all he does.

Now, the start of kindergarten presents more changes and challenges. This, the uncertainty about what will happen with Brooklyn, the fact he is getting his 6 year molars early and all that fun stuff has combined into a perfect storm. I am fighting to not just keep my own candle lit in a hurricane but to also keep his from burning all around him. His pain turns into meltdowns. His fear turns into meltdowns. His heartache is loud, gut wrenching and soul ripping to witness.

The whole time it takes all that I have within me to just tell him I am here, that I love him, that I will always be there for him and that we will be okay somehow. This is not the person he is. This is not the charming, adventurous, sweet, compassionate, gentle and caring little boy talking. This is anguish talking; fear and anger and sorrow and confusion all meshed together into this horrible wretched beast that plagues him without relief. His world as he knew it was upended, and it continues changing, and the work we do to warn and prepare him only goes so far when one has a taste of loss in their mouth.

I try not to talk about meltdowns a lot because how fair is that of me to do so? I do not photograph them. I do not video them*. I do not record them because “that’s real”. Those are his lowest points… I would never want someone transcribing every detail of my worst moments, I can’t do that to him. Yet, here I am, acknowledging they do happen and that we are struggling and struggling hard right now. It does not help that he caught a back to school bug either, but that’s honestly the least of his worries.

Every morning though I wake up to him being eager to hug and letting me know that my little boy is right there, ready to try again with the new day before him. He tries, so I try too. There may be more upsets to his apple cart in the near future but, all things willing, we will finally get him to a calmer, more comfortable place very very very soon. I apologize for being vague, the moment I have concrete facts I’ll happily share them as I always do.

A Little (In)Sight

I cannot remember the first time I noticed it with exact dates or times. I only remember that he was very, very small. Newborns do not focus their eyes well, but babies start to. Toddlers assuredly do so even better, yet somehow, J’s right eye was always seeming to turn inwards. It was typical of me though to constantly question myself. Was that really happening? Was it something to be concerned about? Growing up with a lazy eye myself was on my mind, so I kept watch on it.

Last year, it grew more obvious. He was definitely dealing with something in terms of his vision. The strangest part was this child has never missed a beat in terms of picking up on visual stimuli in his environment. An issue that truly affected his sight to any measurable level was not the first thing that came to mind, strangely enough. He was and is a very visually stimulated child. The journey began to figure out why this one eye decides to do its own thing.

Our first visit to an ophthalmologist was horrifyingly bad.  The woman advertised herself as working with young children and people with disabilities. She claimed to be a developmental ophthalmologist too. This should have uniquely qualified her as someone able to work with a kid like J.

Nope. Nope. Nope. Nope.

She was a nightmare. She was impatient with him, he could not settle in her office and I spent the entire appointment chasing him around to try to settle him while she complained about his lack of cooperation. I’m sorry, but when you’re about as personable as a cactus you’re going to get what you give. She charged us a stupid amount of money for the privilege of learning nothing we needed to know. I was angry and discouraged.

Then we went to the pediatric ophthalmology department at Floating Hospital. This was a whole new world! The techs that work there have a truly golden touch. Our first visit was not perfect but it was good enough that the doctor could see that there was something there, something to be kept watch over and something to try for better assessment of in the future. She did not dismiss us nor did she push J so hard he was in hysterics by the time we left. She worked with him, not against him, his best interest firmly at heart.

That first visit was in December. We were newly home with Brooklyn so her place by his side was not as solidified. She was there for him at the appointment but it wasn’t what it could be. Flash forward to late April…

Perfection. Absolute perfection.

J walked into the office without a fuss. He attended to what the doctor asked him to do, no coaxing from me. I assisted with directing him to reading the board across the room but little more than that. She got an excellent read on what exactly he could and could not see, plus what his vision needed. This visit the crossing of his eyes was very, very clear to her as well. Brooklyn stayed nearby and kept a watchful eye over her most calm of boys. He struggled having his eyes dilated but that was expected. Once the drops were in, his good humor returned and he did just such an impressive job with the rest of the visit.

two pictures together

I cannot even get over the cute here folks.

Trying on glasses was a hardship but he did it. He now sports some dark blue Miraflex glasses that can withstand his level of activity and just general J being J. He has taken to wearing them much, much better than we all expected too. The entire team (doctor, therapists, family) had a plan in place with a back up plan for that plan if he rejected the glasses. They have not been needed yet. He has truly, truly impressed all of us.

The amazing thing is hearing him speak even more about what he sees. Let me tell you, he sees everything and is fascinated by it. Most parents enjoy their children detailing the world as they see it at a younger age… I am so excited to be hearing it now. Car! Truck! Bird! Helicopter! Clouds! … His observations are quick and cheerful. He loves the world around him, so very much.

And every dog is Brookie.

It’s another new little chapter in our great adventure of life adding glasses to his world. He is adapting, he is growing and he is continuing on his own amazing course. It is not always easy but it is the successes that come, like this one, that make any pitfalls seem so very small.

What He Needs to Be Fair

Here I go again, off on a tear about who knows what, right? But hear me out, I beg you.

We have had a run recently of negativity within our home community. It is kind of stunning, honestly. This negativity was never felt during the period where Brooklyn was actually ill and struggling with a few things in public, it’s come during a time where Brooklyn has been on point when working. She has been docile, attentive, friendly and keyed into her tasks. She’s been a joy to work with and a wonder to have in our lives, especially as we watch her and J continue to grow their bond.

But then it starts. The stares. The derisive behaviors. The active detractors who figure that this is something bonus; something extra that J gets just like all his special education services and he’s cheating other people by doing it. They show up with their unruly pets, their bad attitudes and their harsh judgements of our situation. The weather has warmed now, at long last, and with it we have returned to our routine of having some playground time after school. This is very important to J, and Brooklyn is right there with us. She sits watching him and his classmates play, minding where they all go and bothering exactly no one but the people who are pointedly determined to be bothered by her presence.

This is my attempt to educate. I know there are some people who are just so hard-hearted and misguided that this will never get through but I want to always know that I have tried, and tried my best.

equality versus fairness

Credit belongs to someone the internet has long obscured. This image is fantastic.

The difference between “equal” versus “fairness” or “justice” is the key to all of this. When you are looking at the services my son receives and the fact he requires (yes, requires!) a service dog in public spaces as him receiving extra, bonus things you are truly seeing them wrong. I would love for my son to be in a regular classroom with regular worries and a pet dog at home that only friends who come over to play might meet. This is the typical life. This is the life most people just about to have a child anticipate. This is not J, though. He came into this world with his own agenda and his own way of operating that happens to be autism. He needs extra support to be able to do what most people take for granted. This is not a bonus to him, this is helping him function and helping him to access the world around him in a way that is meaningful, comfortable and as close to equal to his neurotypical peers as possible. These things are not some fun toy for us, they are how we make life not just bearable but great for him.

I listened to a mother outright object to all the services special education students receive because they “take away” from her child’s education. I was appalled. I was hurt. This mother has never sat through an IEP meeting, never sat through hours in doctors offices listening to deficiency after deficiency rather than strength after strength; never filled out disability paperwork with the state government so that services might be covered, never fought for fairness and justice for their child on a daily basis. I do not wish that she did have to go through any of that yet I also wish she would stop and realize the cruelty of her words and thoughts on the matter. Would she also begrudge a child with a wheelchair or crutches the extra time it may take them to proceed from one place to another? What about a child with epilepsy the time out of the day it may take when a seizure suddenly strikes and people must attend to them? These are not paths families choose, they are paths we find ourselves on.

This post may never reach the notice of those who need it most. The people who judge us for Brooklyn in our local community will still exist and I am working to reach out to them on a local basis, to educate them as to why she’s present and what she means. I write this because if I can feel the sting of their looks, their choices and their actions my son very likely does too. I am his mother, I want him protected from that harshness as much as humanly possible. Isn’t that what all loving parents want for their kids? Now to get the adults involved in this to see and understand this too. We want fairness for all our kids, not equality. Let them all have what they need to succeed and grow without judgement and without hatred. It’s not a lot to ask, really.

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Just the standard reminder we are still fundraising to celebrate J’s birthday by sponsoring a class of service dog teams graduating from 4 Paws! You can read about our effort here!

Superboy

Before I dive in to this post, just a note for those who missed it on Facebook – We are fundraising to celebrate J’s birthday by sponsoring a class at 4 Paws for Ability! You can read about it here.

This week, J’s hair was showing signs of growing out to a very unsightly mass. My son has sensational hair. It’s luxuriously thick, a beautiful shade of dark brown and soft as can be. The downside of this is that he hates brushing it, so when it grows out to any length because he hates haircuts even more, we have some disasters. His hair got long enough this time that it was in his eyes. I am sure that the Beatles would be impressed with his mop top but neither he nor I were entirely so.

easter

J, Easter Bunny and Brookie B. Thank you Xaverian!

I pitched the idea of a haircut every day. Every day. It was pitched always with low pressure. When something is already a source of major fear and anxiety it is absolutely wrong to add even more stress to it. There is no way that anyone in the situation will learn how to cope if we do that, right? So I pitched the idea gently, made a silly game of discussing it, and let him say “no”. The more he could not see out from under his bangs, the more I asked.

Then, in a moment of potential fail, I bribed. Now, we do not have to bribe in this house usually. True bribing, the offering of an experience or a prize in exchange for doing something desperately disliked, is exceedingly rare. This was a desperate time, it called for desperate measures… like offering a choice of Thomas and Friends trains or track. I asked him if he would like to get a haircut, then get a Thomas train after he finished his occupational and speech therapies on Wednesday…

…And he said yes.

I had to ask him 2 more times to make sure I heard correctly! We gathered the troops and pretty much ran headlong towards a local salon. We weren’t taking any chance of minds being changed.

J has always fought entering salons. He misses nothing. He knows where he is going. Brooklyn and he approached the salon with us and he started to hesitate but entered. It was busy, noisy and crowded. He stayed with us. No screaming, no resisting yet. He waited his turn, an absolute feat for him. A wonderful young woman named Danielle called us back when it was time.

He started to fall apart. I had to remove his coat. This strange but friendly lady was talking to him. He was scared because he’d never been this particular place before and his last memories were not good when it came to haircuts. hairscut

Then the stars, somehow, aligned.

Danielle exhibited a kind, gentle patience. We got his coat off. He sat on my lap. I wore the cape, he did not. He faced me, not the mirror, and he struggled… but when she started the clippers he ceased his screaming in fear and said “that tickles!”. He struggled mightily with all that a haircut entails, but he was not paralyzed with outright terror. He even laughed a couple of times. He allowed two passes of the cool blow drier to remove fallen hair from his head and shoulders, something he’s never done.

He did amazing. 

Now, he is roughly 10lbs lighter and 100 times happier without so much hair on his head. Brooklyn loved on him when he was done and they left side by side, just as they came in. She hated waiting for him while hearing him in distress but did her job exactly as she should.

We chose trains at the store not 15 minutes later, brought them  home, added them to our collection and enjoyed a fun night of playing with them. Now to hope that this experience keeps him aware next time that it won’t be quite so bad. It may not be easy, but it’s not terrible.

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Oddly, the same day, we had another new experience.

J talked to a stranger. Spontaneously.

I generally have to prompt him when we are talking with new people. He rarely engages until he’s settled with the new people, which is fine. I wrote this up on my personal Facebook so I hope you’ll forgive my copying and pasting:

When we were leaving his OT/Speech clinic a gentleman (well dressed, handsome, clearly from a more luxurious tax bracket than we plebs) was behind us at a little distance. He caught up as we reached the end of the path to the parking lot, greeted us with a nod as he passed us and went on his way.

Or so he thought.

Jacob called after him. My son, who rarely to -never- talks to strangers without prompting, called spontaneously after the stranger. “HEY!”

The gentleman, being absolutely worthy of that term, turned back. “Yes?”

“Where you going?!” Jacob asked, like a surly little police officer.

“To my car,” the man answered, amused.

“Why?!” asks Officer Jacob.

I stepped in at this point, trying not to cry with laughter more than embarrassment because the man handled it so beautifully and I could not believe it had just happened. He smiled at Jacob and Brookie, waved to us and went about his life. This kid will never cease to surprise me.

My son sounded straight out of Southie, a silly Boston stereotype with his strong questioning. This man, who we have never met and may never meet again, could not have been any more friendly about it. That day, I swear… the universe was all together there for J to succeed however he wished to, so he did. He does everything in his own time, and his own way. I have zero doubts that my son is able to do anything he sets his mind to. He will show us his amazing mind and amazing skills in his own way and time, just as he does now, and I am loving being a privileged spectator on this adventure.

Failcakes

This morning we attempted something I rarely attempt on our own anymore: A trip to IHOP (International House of Pancakes is now just IHOP, apparently).

Now, in the past, J and I would regularly go out to eat together. That was in the days before preschool took over his schedule more than therapy and our days became a lot more completely regimented. We would frequently drive to IKEA for their lovely potatoes and bacon that would cost us a lump sum of $5 for our entire meal together. We would venture to IHOP occasionally, mostly with success. There was one trip to Fridays that was…. okay. Not great, not terrible either, but this is par for the course with J and restaurants in general whether it’s with a few people or just us.

Today, I got crazy? Ambitious? Mentally unglued? I decided since we had gift cards, why not give my beloved IHOP a try. We had Brooklyn with us of course, so it could not be that bad, right?

Wrong. Well, kind of wrong. Sort of maybe halfway wrong.

We got seated pretty much next to the cashier and hostess. This boded poorly from the start. When you couple that with the fact that it was hot as blazes in there, we were not off to an auspicious start. I got Brooklyn under the table, no small feat, and then J was refusing to sit. The cushion on the bench on one side of the booth was torn. I guide him to the other bench and we get settled. Drinks and food are ordered and then of course all hell breaks loose.

It wasn’t as bad as say, Brooklyn eating off someone’s plate or J hanging from the rafters but it wasn’t anywhere near what would be deemed socially acceptable. J kept creeping under the table, startling Brooklyn and sending her skittering out into the path of traffic. She’d need to be coaxed back under the table, so it took a bit to move her out of the way. Then, J insisted on hanging his head off the end of the bench… into the line of traffic. This was followed by the fall into the middle of the floor routine which was only interrupted briefly by three bites of the whipped cream and chocolate chips on his “birthday pancake”, as he dubbed it.

Bless the waitress’ heart, she never flinched. She appeared at all the right times and brought all the right things. The moment she saw the antics of our party, she was lovely and accepting.

I was genuinely ready to gather up the gang, pay and go out to the car for a good cry once everyone was settled. Then this happened:

atihop

J had vanished in the single second I had taken to actually drink some of my beverage and I had not seen him walk away from the table. I looked down and there these two were, peering out at the restaurant around us from under the table. She nuzzled his hands as he patted her and assumed her “best buddy” position beside him while he leaned against her.

So yes, our trip was pretty much a disaster but when you get to see a child that has problems making connections with people throw all this trust on the paws of a friend who simply loves her buddy in return, it’s not all that bad is it. He felt unsafe and uncomfortable. She reassured and centered him, all without anyone outside of them doing anything.

I hope all episodes of failcakes end this way and that these two have a lot more years to come.

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