Author: galebird (Page 3 of 5)

How It Is

March 27, 2013 / galebird / 0 Comments

Little bear is still sick, sadly. He’s snuggled on the couch drooling on my pillow as I type this.

I texted one of his therapists this morning, someone he adores intensely and who adores him just as much in turn I think, and let her know we had to cancel today. Even if I read things wrong, it’s nice to think that they care as much about him as I do. I know most of them if not all appreciate his general demeanor. He is a happy child overall, even with his peculiar way of approaching the world. He near always greets with big smiles and will crack them up at least once a visit if not more.

So, as my train of thought often does, it veered wildly from thinking about that off into the scary forest of Future Tense. I wondered what it will be like for my little boy in a few years, in a decade, when he is grown… Will this boy still be so sweet, loving and joyful?

That’s when I got scared. That’s when I got sad.

Right now, he has the blessing of ignorance on his side. People see him as just a charming, if somewhat odd, little boy. He’s adorable. It saves his hide even from me in a lot of ways. He is treated gently accordingly a lot of the time (there’s always those people who are just born to be cruel no matter what they’re faced with. Let’s ignore them.) and he has no reason in this world to even realize there’s something different about him. He’s given the safety and security to just be himself.

What happens the day he realizes he’s different? What will that do to his world view? How will that impact him?

Forseeing pain for your child is gut wrenching. You never want them to hurt. You know they will, for that’s a major part of the human condition, but all you want to do is shield and save them. This demon I can’t hold off forever. I can prepare him, I can bolster him, I can hold his hand and remind him of who at heart he truly is… but I can’t take this weight off his shoulders when it comes to bear.

My dear, gentle boy.. You are different. You’re very different. I’m sorry for the times you might come to feel that life would be so much better if you were “normal” but that’s not the way the dye was cast for you. You don’t need to be normal. You need to be you… Beautiful, expressive, loving and hilarous you. It’s okay to feel sad, or mad, or all of that. We all do. I just hope you realize how precious you are exactly the way you were made and what a treasure that is.

We’ll make it work. To use the words of Temple Grandin… You’re different, not less. You are loved for exactly how you are.

Good sir, taking pictures of himself as he so loves to do.

Go Away, Croup and Humanity in the Hospital

March 26, 2013 / galebird / 0 Comments

J-bear is one of those unlucky kids who is susceptible to croup. His first run in with it was a week before his second birthday when he had to spend a night in the hospital because it took that long for the stridor (that awful barking cough sound) to calm the heck down. Breathing treatments, steroids, the works. This was before we knew he had autism and it was harrowing.

He’s had a few attacks since then, all minor and easily relieved with heavy steam and keeping him calm. Not so bad, right?

Then came Ninja Croup.

Seriously this came out of no where. Usually when the little guy gets sick, we get a shot across the bow of some sort. He’ll have a gagging episode of all mucous, he’ll be completely out of sorts, he’ll abruptly be lethargic… Something will tip the world off that there is something Not Right going on with him and the world may brace itself as it waits for the storm to break. This time whoever is in charge forgot to schedule the warning.

Last night, he went to sleep after a night of his usual playful antics. We played games with the exercise ball, goofed around the living room, did milk and cuddles and bedtime. 12:30am rolled around and all hell broke loose. He woke up coughing and hysterical, unable to be calmed. This is scary to all involved, in my opinion, as he has no way to articulate a single thing about what’s ailing him. It’s an elaborate guessing game that thankfully those who are closest to him are growing increasingly good at playing. He’s coughing, spiking a fever… then the barking started. Stridor. Croup. Damnit.

Tried steam, tried coaxing him into calm, tried giving him his dearly beloved ginky (pacifier)… Nothing helped. He choked up a healthy amount of mucous but still, no calm and he was fighting to breathe.

So off to the ER!

And that’s what drove me to write this post. The world didn’t need to know our saga of croup. The thoughts that brought me here are merely tied to that saga.

There are some places in the world that are just unfortunately completely unfriendly to a child like J. The hospital, especially the emergency room, is near the top if not absolutely tops on that list. Bright, intrusive flourescent lights coupled with lots of foreign noises, strange people and repeated examinations… Oh, and the fact that they always want to put sticky things on him. That’s it. It’s hell on earth to the poor guy.

With the prevalence of autism increasing it seems by the day, you’d think there’d be more awareness in hospitals. Exactly one nurse who interacted with us took to hear that he does deal with autism and asked how best to approach him. What works? Is he okay with touch? How can we make this easier? She respected the bright lights in his exam room being turned off (ambient light from various monitors and the hall outside were more than enough) and just took great care with him. Everyone else was so hurried they ignored the person that is my son. They never mentioned what they were doing, just hastened through doing whatever they felt best and scurried along. It was hours before the kindly nurse realized the oversight and explained exactly what the plan for his care was, what had been done, and how long we’d be there.

He’s an almost 3 year old with limited language. I get that. But he’s human. He understands how you address and approach him with more clarity than he is given credit for. He was scared. He was sick. He needed their best compassion rather than impatience. I appreciate that one good nurse a great deal. J was delivered in that hospital and I know how amazing their nursing team can be… it just largely failed this little guy last night.

Anyway the little monster is home, recovering and showing signs of his usual self as it got closer to bedtime. Croup is a right bastard though and tends to get worse in the night so it remains to be seen how tonight and tomorrow night goes. The steroids should carry him through til tomorrow and allow his body to have had time to fight off the infection enough to avoid any more hospital runs.

Here’s hoping, anyway.

To be or not to be (verbal)…

March 23, 2013 / galebird / 0 Comments

Today after an outting, I was left thinking on something I have considered often before.

My son is considered non-verbal. He has some words, and he’s growing in his use of them, but they are sporadic and a lot of his language is echolalic meaning he echoes without much meaning if any at all. He is only a nearly three year old guy though, so people often write him off as being a shy child. It’s not a big deal in public… yet. That’s another tale for another day.

Non-verbal does not mean he is not expressive, which is what led me to writing here today. The range of emotions that plays across my child’s face in the course of a day can overwhelm, astound and amaze me all in turn. He will never successfully play poker, for one thing. He has a face like glass, every thought laid out plain as day before the eyes of those lucky enough to watch. Joy, sorrow, fear, frustration, anger, pain, mishief… His sweet face is so dynamic that I can find myself forgetting we’ve managed to have a ‘conversation’ without a word, or that he’s entertained our whole table (and then some) at a meal without ever uttering a syllable.

It’s a definite art. A smile here, a side of the eye glance there, a furrow of a brow or a wrinkle of the nose… This child starts games with familiar adults without saying a thing. He simply shows them what he means and what he wants with simple, clear determination.

I am a biased spectator though. Every day, I am my son’s translator, his advocate, his voice, his comfort person, his waitress, his short order cook, his maid… his mom. I read him like a book as we’ve been at each other’s sides near every hour of ever day of his short life. I am not always right, as reading another person is a wildly imperfect art, but I have confidence that most of the time I do get it right.

Unless he is sick. When he’s sick I curse his inability to articulate needs and problems with such a violence it’s indecent.

I guess the point of this is that I am coming to appreciate how he communicates now, knowing it will change as he learns and grows. I pray of course that he will grow more verbal over time but I am aware that might not be the case for him and am leaving myself wide open to whatever method of communication comes to be for us. If smoke signals and Morse code are all that might ever work for us, I’ll stock up on lighters, tinder and items that are easy to tap together ASAP for it will just be nice to have a conversation with my boy.

He is a good boy, a loving boy, a funny boy, a gentle boy, a rowdy boy but right now he is a quiet boy too, and that’s okay. He’s the only J-bear I know and I love him for who and what he is, no more and no less.

Local Autism Event – Discovery Museum in Acton

March 19, 2013 / galebird / 0 Comments

For families of young children on the spectrum, the Discovery Museums in Acton is having Especially for Me! day focusing on children and families dealing with autism on Saturday, 3/23 from 5:30-8:30. You must register in advance (you can do so here) and it is free. They keep things pretty low key and it makes for a fun evening.

The next event will be Saturday, April 27th, and you can register for that date here.

Always a Party

March 19, 2013 / galebird / 0 Comments

You have not lived until you’ve had a diaper explode and leave its mark all over your living room. We’re not talking bowel fail here, we’re talking all the innards of the diaper decided to be out-ards all over the place. I mean, seriously. It was a Greek tragedy all over the living room that required vaccuuming, carpet steaming and the burning of sage to cleanse the evil spirits that must have once possessed that diaper out of the house.

J didn’t care. He rarely does. As long as life goes apace for him he doesn’t give a care about these random crash and burns. Meanwhile, it’s me losing her marbles over omg another night spent with my best friend the carpet steamer.

————-

Conversations have been hilarious the past few days because J decided he has to supply your answer, too. Before, conversations went like this:

J: Help.

me: Would you like milk?

J: Milk, please

me: Okay!

and we’d go get milk.

Now?

J: Help

me: Would you like milk?

J: Milk, please. (a pause) Okay!

Me: ….

…. Apparently, whoever he’s talking to at the moment never ever says no. It’s both funny and minorly frustrating. Definitely more the former than the latter.

—————-

Yesterday, we completed his one year evaluation with Early Intervention.

I was SHOCKED that he was delayed in social, cognitive and communication! And if you believe that, I have oceanfront property in Arizona to sell you.

He improved markedly if you look outside the numbers. His skills have grown a lot in the past year, which is so promising. It makes me so happy and proud of him to hear that. The numbers look very similar to last year’s but the test asked a lot more this year than it did of him last year due to his age. I understand that. He struggled mightily with the testing as he is not at all a man of quick transitions but we got through it and we never have to do that particular assessment again.

The best part of the whole thing was he saw his whole Early Intervention team – his group leader, his coordinator and his early intervention OT – in one spot for the first time ever. It blew his mind to see his group leader outside of the center! He had fun playing with them all and reminded me how sad I am going to be when our adventures with them are over come June.

I am sure I will have something more deep and profound to write soon. The fun never ends.

Sigh

March 15, 2013 / galebird / 0 Comments

So, no word from Floating Hospital about this sleep study. Meanwhile, he gagged and cried so hard last night after waking up gagging that he has petechia (little red dots where tiny capillaries broke from the force of his coughing/gagging/crying) all around his beautiful eyes.

The hardest part? Not the throwing up. Not the cleaning up. Not any of that. It was the fact that I could not tell what the problem was. My son could not tell me what was wrong, only that something WAS wrong and then the guessing game ensues. Trial and error, trial and error, all while this poor child is fearful, in pain, etc. It is about the most discouraging part of all of this stuff.

Now, do not mistake me. Every experience teaches a little about what the causes COULD be, and yet, inconsistency can be king somedays. A parent in my parents group notes her child to be “consistent at being inconsistent” and ya know, that’s exactly how I am learning autism to be for my son.

One day, he’s mister present. He’s engaging in his own way, completely involved in whatever therapies are happening that day and truly delighted to be alive so it seems. Then there’s the other days, where stimming and regression are king and it feels like nothing positive can get done at all. And then, there’s days that are a combo of the two. Most days tend to be a combo, though one always shows more heavily than the other.

Today is more positive than negative, for which I am grateful, but man do I ever need to get a response on that sleep study so we know where we’re going and what we’re doing. I want him to have relief, and I want the answers others can give me for him right now.

———–

The lessons I learn:

J cannot tolerate sitting in a regular shopping carriage and if allowed to run free will do just that. He’ll stim on the carriage, at peril to himself, and stim on everyone else’s too. It’s frustrating but hey, he’s overwhelmed in big stores. I understand why he does it. There are more days than not right now where, if it’s available, I can use one of those impossible to steer mega carts with the forward facing bench or kid seats and we’ll enjoy GREAT success. He’s happy, able to feel secure while interacting with me when we shop and I’m happy cause I can get the shopping done without being so worried about him.

Today he was very dubious about shopping carts at all. I let him pop up into the seat on his own and buckled him in and he wasn’t too keen. He had a little meltdown at the pharmacy and couldn’t settle. So what’d I do?

Strap his cat in beside him.

Why didn’t I think of this months ago? I wish I had a picture. J in one seat, cat in the other as we cruised Target. I could have shopped all day, he was so comfortable and content.

My life is all about whatever gets us through the day.

God help us all if anything ever happens to Fat Kitty. We’ll all be screwed, then.

The Most Evaluated 2y9m old on the PLANET.

March 13, 2013 / galebird / 0 Comments

Seriously, can J-bear get a cape? A theme song? SOMETHING for going through evaluations by the millions?

Let’s break it down:

Since January, he’s had the following:

– ABA evaluation (checks progress of therapy, develops new goals)

– Developmental Evaluation (the complete BIG evaluation determining all his diagnoses)

– Early Intervention evaluation (okay this is Monday but still)

– Speech Therapy Evaluation

And then between now and June, the schools propose THREE more.

… Are you people kidding me.

I understand the need for a lot of these. I am grateful that the ABA, Speech and EI evaluations are all completed by people who are familiar to him, so they feel like a session filled with play as well as work. He has only had 1 evaluation this year that was truly hard for him and he made it through.

Every time I go through one of these it is an emotional wringer. First, I watch him work his way through the obstacles placed before him so that his skills may be studied and considered. Then, I watch people deliberate over what the data they collected tells them. Finally, I get emotionally knocked around by hearing “deficient” in this, “behind” in that, so on and so forth.

I propose that all people involved in these evaluations on children place a category within their reports that outlines what the child is AWESOME at. Seriously. We parents and caregivers might very much need that, and as the child gets older, they might need it too! They deserve to see/hear the ways in which they are exceptional. I know my son is delayed and struggling significantly in some areas. It made my day today to have the woman doing his speech evaluation share a great deal of positivity with me about what she sees in Jacob and how she feels about where we can go from here.

We need positivity amongs facing all the challenges. I needed today to hear someone say that he truly is a bright, sweet boy – to know that others can in fact see what I know is so very much him.

Still waiting to hear when we might be headed for a sleep study for him. Good times!

March 13, 2013 / galebird / 0 Comments

I have a lot to say but til I get time to write enjoy this epic picture.

Long Time, No Write

March 7, 2013 / galebird / 0 Comments

The rumors of my demise have been greatly exaggerated.

We’re still plugging along, doing our thing. Here’s some interludes.

Tonight at dinner, J was standing on his chair (which he’s not supposed to do of course) and he was conducting an unseen symphony before he picked up a chip off his plate. The chip had gotten ketchup on it. He gasped dramatically and started saying sorry repeatedly to it while trying to repair the damage. When repairs were impossible, he ate around the afflicted part and abandoned the rest of the chip.

This is my life.

Yesterday, at an early morning OT session, he crawled into his tunnel and did half his session from within it. He’d crawl in and out, pausing only to attend to tasks from his OT and then back to the crawling. It seems so silly but it was an effective motivator. Just have to remember to keep the tunnel available.

——–

Today we visited the ENT. His gagging has been awful since, well, solid foods began. It was always assumed to be behavioral. He’s extremely defensive and sensitive about his mouth. However, it’s been discovered that the gagging cannot be recreated behaviorally and not for lack of trying. He also has episodes of lapsed breathing (!!!) and snoring while sleeping so off we went to try and solve this mystery.

We saw Dr. Andrew Doolittle in Winchester, MA, and though I was uncertain at first I appreciated his approach to J’s situation. J is a seizure risk. His usual response to what he saw in J would be to schedule a tonsillectomy and see how things go from there. However, this might not be the root of all things with J. So we’re going to do a sleep study then consider our options from there based on what that tells us. I like the cautious approach even though the study will be difficult. I would rather have answers and the ability to consider other options before braving surgery and, more frighteningly, sedation.

I’ll update when we get a date for this fiasco to go down. I think I’ll need to get those conducting the study to sign wavers, for serious. J’s no picnic with these things on a good day, never mind tired and angry.

————

So that’s the way our cookie crumbles these days. I’ve got a hilarious little boy telling me tall tales in minion, reciting scenes from movies (thank you, Megamind) in his own manner and just generally being trying but hilarious. So much of his behavior can be seen as him being 2.5 years old. Other things, well, that’s all you a-word. All you. There’s never a dull moment.

Insurance and Interludes.

February 23, 2013 / galebird / 0 Comments

I am gearing up for a battle. I am not sure who it is against, if it is versus Blue Cross Blue Shield of MA or if it is versus my son’s doctor’s office.

Here’s the tale.

I requested, in early 11/2012, that a referral be processed to the Occupational Therapy clinic my son was about to be evaluated at and now receives therapy through. No response as you only speak to a voicemail. Several weeks in, the clinic received no referral. Not only did I call them, I also brought over a sheet with a list of required referrals to Occupational Therapy at said clinic for 2012 and 2013, for his evaluations at Floating Hospital, etc. Everything was laid out in very specific detail. I ended up giving them this page TWICE.

Fast forward to this month. The referrals have never appeared. I call and speak to the office manager, who forwards me to the one woman who processes referrals. She hits me with “you never requested them.” I hit back with dates, times and visits on which I gave them the printed list of what he needs as I know it’s a lot. They send referrals. The referrals are for the wrong dates and wrong person. I call back. We return to the “you never told us” line. I repeat all the times I told them. I get a hang dog return call saying it’s all straightened out.

OT clinic calls me and states they got the referrals. For speech therapy. J does not begin speech therapy for a month and I had mentioned it to no one at all at this point amidst the effort to sort out the occupational therapy nonsense. I call back the woman at J’s primary care doctor. She huffs, sighs, says she’ll “figure it out”. A couple of days later I get a sing-song voice mail saying it’s all taken care of but you only get eight visits for the year, good luck and have fun!

Are you kidding me?! This child, by all recommendations, needs far more than eight visits in a calendar year!! He goes twice a week! We’ve already blown through the 8 visits and it’s not even March!

Now I have to fight someone to get this straightened and face the fact that I might have to remove J from a clinic that is amazing for him to another that might not meet all his needs quite so well. I am nauseated and frustrated at the idea of this. These women, alongside with his ABA therapists and EI case workers, have been life changing to him. This combination of team members has fit together just right. I do not want him to go somewhere he is not so well cared for and I am uneasy about our other options. For now, I am stuck in the hurry up and wait.

————

Yesterday morning at the OT clinic, a boy of about 8 or 9 came into the waiting room while we awaited J’s appointment. My guy has been working hard on greeting people, which comes across like Wall-e greeting E-va for the first time. He walks up and gets a little too close, then says slowly “hiiii” with a funny little wave. There’s a warm smile to match all of this but it’s still that little alien odd. Most children either ignore him or they shrug it off and either play with or around him, no big deal. This little boy made my day and I so wish I had thought to tell his dad what a good boy he has. He said hi back to J and asked him what he was playing, then tolerated J’s staring and curiousity. He was very kind to him in his own way.

I appreciated that a great deal. Some kids just get it, and this kid was one of them.

———————-

What happens in Parent Group doesn’t always stay in parent group. A final quip:

You haven’t lived til you’ve talked about poop charts and flame throwers in the course of the same conversation.