learning to navigate the world, j-bear style

Author: galebird (Page 2 of 5)


This morning, I had a plethora of other items, mundane and more thoughtful, to write about. I truly did. I had a list I was going to pic from and get to writing when I got home from another day at the ballpark. 

Then the world I know, the city I love, kind of went pear shaped.

Melodramatic, right? Only it wasn’t. Not to the people attending and participating in the Boston Marathon today and not to the people who live and work in the city I call home. 

Moments like this bring out the best and worst in people. Men and women I have worked alongside in my role at Fenway showed their true colors today as first responders. These seasoned officers ran into the danger we, as humans, instinctually run away from in order to do what they could to save and preserve lives. They, along with many brave bystanders, saved lives today. Their stories will be told in the days to come, the tales of how to someone they are truly an angel. They are the beauty in this tragedy.

Then there’s the ugly. After Newtown, it was the autism community that was side eyed and stereotyped in brutal fashion. After Oklahoma City, after both attacks on the WTC, it was the Muslim community and even the East Indian community. 

When did we, as a nation, start believing the actions of one defined the actions of all?

If someone came up and slapped me, I would be angry at he or she who slapped me – not at the innocent people who share similar traits to said person. If it was their family who taught and encouraged them to be that way, or their social club… I would be angry with the ones who gave them these values and showed them how to choose such a path, too. I would not hate the innocents who share traits with them. I cannot hate the innocents who share traits with them. 

There are bad apples in every bunch. I won’t let them ruin it for all the others. I cannot.

I don’t have time to demonize a group of people. I do not have the energy. My energy is spent on praying for those devastated today. There is one family who will bury a precious child. There is another family who will bury a precious loved one and still ever so many more who are changed in a way that will make it feel, for a long time, like they really may have died today despite still being here. The trauma of today feels fresh yet it is not fully played out. It will be written on the victims for years to come, in their flesh and on their hearts and minds. They need our love, not our anger and hate, to recover. They need our strength and support.

Do not mistake my rambling, I want to find who did this as much as the next person and I want to see them punished… I do not however want to watch witch hunts occur fueled by blind, ignorant hatred. 

We are Boston. We are better than that.

Rambling Weather

Someone forgot to give Mother Nature the memo on spring. I am not nearly as irked as it feels most of the rest of the world is on this count, for I am not one for warm weather for too long, but all in all it feels weird to be at Fenway Park for baseball when it feels like hockey weather.

Despite having regretfully left my position at Fenway for this season I did work a couple games this week and will work one upcoming game. I love the place. I’m excited to be attending as a fan later this month for Autism Speaks night. It’ll be J’s first actual game as a fan despite all his time spent within those hallowed walls. He has his own ticket and will be Mister Big Man, marching about… wearing a harness for his own safety, of course.

Today I attended “Parenting a Child with Autism: Putting the Pieces Together”, a conference for parents put on by Endicott College Institute for Behavioral Studies. The conference was quite, quite good. The keynote speaker, Margaret Bauman, MD, is the Founding Director of the Lurie Center for Autism at Massachusetts General Hospital. If you ever get to see her speak I encourage you to do so. She peppers the information with amazing anecdotes that make her material relateable. Today’s topic was Disruptive Behaviors and Medical Co-Morbidities. 

I needed this topic.

Children with autism, as most parents come to learn quickly, do not manifest symptoms of physical ailments in a typical manner. A neurotypical child of my son’s age could at least give you an inkling that his ear hurt, his throat hurt, his stomach hurt… A child with autism, be they verbal or non-verbal, cannot localize the pain and discomfort they’re feeling in a manner that allows them to identify it easily to you. They know something is not well, but expressing it? It comes out sideways.

My son’s latest illness showed itself before it made a major physical manifestation. The Friday previous, he was completely off in all his therapy sessions. We chalked it up to Friday-itis and being tired of a week of therapy. Looking back, it wasn’t entirely a wrong judgement, but going forward I know to pay mind to these patterns more closely for by Monday night we were in the ER for croup. He knew and could not tell us. Most people and most medical professionals can, and will, chalk up erratic behaviors to the child’s autism diagnosis. It’s our job as caregivers to stop them when we can see that it might not be entirely the case so our loved ones get the care they might desperately need to feel better.

I also attended a seminar on feeding by Christopher Perrin, Ph.D., BCBA-D, from Melmark in Pennsylvania. He was an excellent speaker! He gave a very clear, detailed but not overwhelming workshop on challenging feeding behaviors, how to identify the problems and how to work on solving them. He unabashedly stated that parents can be out of their depths with this and that that was absolutely okay, that there are professionals out there who can lend assistance alongside the child’s medical care team. I’ll go into detail on techniques offered another time as I try and sort out how to integrate them into the little bear’s life.

One cannot live on PB&J, chips, graham crackers, milk, yogurt and chocolate alone.

I feel bound up just typing that. 

This is what I’ve been keeping busy with anyway. J had an OT evaluation at the public school this past Wednesday. Poor OT, she’s a brilliantly nice lady – so nice J held her hand without prompting as we left – but he could not focus worth a damn. He stimmed on any and everything. It was insane. I am nervous about the whole IEP process but hopefully it turns out to be less of a demon than that which I am fearing. We’ll see.

To those of you who stop by to read… Hello and thank you for being there. 🙂

Update on Emitopalooza 2013 (and news!)


A visit to the doctor was had. I feel better about things. We discussed the situation at length. The chance of it being behavioral has been proven to be slim. His occupational therapist tried to recreate a couple of scenarios where he was thought to force vomitting and it never happened. There is also no consistency to the whens, wheres and whys of it beyond the fact that he does gag a lot and gag easily. It’s never been done to avoid anything or as anything worse than an accidental side effect of crying too hard and triggering the gag reflex. 

The ENT feels it is his huge ol’ tonsils, but a sleep study (which is now scheduled!) has to be done to rule out a few other things pertaining to his snoring and his being monitored for seizure disorder. Based on his, and that we discovered that a dose of zofran was the only commonality between days he did NOT vomit in the past two weeks, his doc decided to stick with zofran once a day until we see what happens with his potential tonsillectomy. If he has the tonsils out and we’re still all puke-faced around here, I might lose my last marble.

But today did bring good news!

I spoke with 4 Paws for Ability and after discussing J’s needs and what he needs the most assistance with it was decided that an autism service dog would be a great fit for him! We’ll be receiving a contract and further details in the coming weeks and have a lot of fundraising ahead of us but the fact that this is now all getting started and there’s hope he can receive such assistance left me sitting down and crying when I got off the phone. 

People see my son and see wow, a little kid. Little kids tantrum, little kids run off, etc. They do not understand the severity of what goes on with him without living in my shoes day to day. They can’t, and I do not expect them to. The blessings this dog can bring to my family… That’s what left me crying. I could have help calming my son, help finding him should he wander, help keeping him close so he doesn’t get lost from me in a busy place… I could give him the care level he absolutely needs, deserves and requires at all times. The dog can be there for him in so many ways that it is hard for me to be there for him without literally ceasing to live life. I am just blown away right now. I am not one who knows what to do with good news, after all.

What a day, what a day.

Vomit Comet

This is what my life has come to.

I’m writing a blog post about puke. Vomit. Yarf. Barf. Technicolor Yawning.

Whatever you want to call it, I’m the weirdo sitting here writing about it.

J-bear is not the guy who gets ear infections by the dozens. He is not the kid with a constant runny nose. He is not the kid with the weird rash on his butt year round, though he’s occasionally known to sport one as most children in diapers do. I am blessed in some ways.

In another, I am cursed. I have the gagger. The puker.

Now, usually, the gags and vomits just occur pleasant places like at home on my living room carpet which, thanks to our slumlord, is already vomit colored. Convenient, right? He has gotten the kitchen floor, the bathroom floor, the bed and anyone who doesn’t move fast enough too. It’s sad, it’s frustrating, it’s gross as all get out… It’s a part of our lives. There is no rhyme or reason to this vomitting. 

Now, come to this week, and he’s vomited on not one but two of his therapists. Neither scenario has had any commonality beyond a therapist being in the line of fire. Once, he’d been upset immediately prior. Today’s? Nope. He was in SUCH a good mood. He’d woken up this morning, had a nice breakfast and a nice bath followed by a long massage that left him content and as calm as he ever gets. He marched into speech pleased as punch.


Okay it wasn’t THAT bad but when you’re the mom of the kid that puked, it might as well be. Guilt, embarassment, all of it lines up behind the deep worry that exists for your child.

So today, we go again to his doctor and go “please help us”… Something is clearly going on. He has large tonsils, which we’re investigating having removed. He has a sleep study on 4/24 to see if there’s any reason we should not go through with the tonsilectomy. Is there something more than that? Are we missing something big? My son is a scrawny little fella. He has no weight to spare… I can’t have him vomitting one or more times per day. His system can’t afford it.

Thank you for tolerating this entry about puke. In thanks for your suffering through this, here’s a cute picture of a not pukey J: 


He’s not even 1 in this picture and just SO HAPPY about those toys!

Autism A-what?

It’s Autism Awareness/Acceptance Month. I feel I should have written about this sooner but life gets away from me.

Other families contending with autism have already noted this everywhere: Every day of our lives is autism awareness and acceptance day. It simply has to be. It’s not like our loved one wakes up some random Wednesday and says “eh, going to put the autism in the closet today!” and just takes a time out from it. It is the ghost in the corners of our homes, always there, always lurking, always eluding clear and consistent explainations and answers.

It just is what it is. And we cope. 

And to think, I am a freshman at the University of Life with Autism. I just started this journey alongside my son. We have a lot of years of study and learning before us and yet, already I feel overwhelmed a lot of days. 

I am learning that might never entirely go away. I am learning I need to find peace and grace with that.

After intense illness last week, my son is not wholly well again still. He vomitted twice yesterday. I cannot just ask him “okay dude, what’s hurting? what’s making you feel sick?” or any such question. I have to ride things out until a symptom or group of symptoms presents in such a manner that the symptoms cannot be managed by common sense home care. I have to play elaborate guessing games and do a lot of hoping and praying. 

It sucks.

I cannot have a conversation with my child. I do not have any guarantees beyond desperate hopes that I ever will. I cannot expect him to interact with the world at large the same way I do or the same way his neurotypical peers do. 

It’s okay though. It’s going to be okay, even when I spend a night in tears of frustration and anger because I cannot sleep due to my son tugging at my ear, pushing at my back or rubbing at my arm so very much that there’s no peace for either of us. 

He is, after all, a person with autism. A person. A sweet, wonderful, charming person. An awesome person. 

We’ll get through this, despite autism and despite my random ramblings. It will be hard but it will be okay. 


I should be focusing on Autism Awareness and Acceptance Day. I really should. It’s important to myself and those I love.

But I can’t. I’m too angry.

And I’m here to spill my tale to all who care to read.

In September of 2011, a water stain appeared on my son’s ceiling. It was small, but water stains are water stains and thus I contacted the landlady. There was no response.

One month later, the stain had grown. I contacted the landlady again. I was told she checked out the upstairs bathroom, which is directly above where the stain was, and it was “all fine”. 

It wasn’t fine.

This continued through til February, when water started dripping into my son’s bedroom. At this point we had to close off the room to his use and he began sleeping in the living room. NOT IDEAL. She sent a plumber, who informed me that without appropriate access to upstairs there wasn’t much he could do. No clue if he ever actually got access. Landlady informs me “all is fine” upstairs and sends a painter to paint the ceiling… which was still wet from leaking upstairs. Against the young man’s better judgement, he scraped and repainted the ceiling.

On May 24, 2012, the water stains began appearing anew and worse this time. By the time someone ever came to look at anything the ceiling was bowed downwards and cracking wide open.


June 5th, a plumber determines that a fitting in the upstairs bathroom (the faucet on the tub I believe) was cracked and had been leaking all this time, worse by the day. He replaced it.  Meanwhile, his inspection of my son’s room caused the ceiling that was damaged to completely come down, revealing an incredible amount of black mold, etc. No one came to clean up this damage for weeks. The Board of Health got involved and, after refusal to pay rent til this was rectified, the issue was resolved in July 2012. 

Now, once the Board of Health got involved, our upstairs neighbors were abruptly allowed to have a dog in their apartment. Strange, considering the landlady was so adamant about NO PETS ALLOWED upon our moving in. However, a dog is a dog, I can’t argue that. I can, however, argue against the fact that when she did this she arbitrarily had us informed after the fact that we are banned from the back yard. I had to remove all my son’s new toys – received for his birthday – from the yard immediately. We are still banned from the yard despite nothing in our lease stating we are barred from ANY common areas on the property. That in no way seems retaliatory does it? Cause her reasoning is us not “being nice” to our upstairs neighbors – never mind the ugly things they do to and call us.

Add on top of it that the last time she came into this apartment during the repairs she stood in the kitchen and demanded rent on an apartment with an uninhabitable room (didn’t get it til the Board of Health signed off) and then stood in my doorway, gestured at my son, and said “So what’s wrong with him?” like he wasn’t able to hear or understand her… Like he wasn’t human. I have never been so disgusted and upset with another human being.

Now, why is this making me angry today? It’s been quite a while, right?

Because last night part of the fence was damaged and the landlady could not get over here fast enough to do whatever our upstairs neighbors needed or wanted.

Now, oh readers – the few, the brave, the faithful – how would YOU react to that? Cause I’m ready to spit nails.

I’ll add some pictures tonight to illustrate some of this so this post will be edited later.

Worn Down

There are days where all I feel is an immeasurable amount of burnout.

We do therapy 5 days a week. Our average week right now is like this, with 2 days of speech therapy to begin soon:

Monday: Early Intervention (Developmental Specialist) – 1 hour

Tuesday: Occupational Therapy – 1 hours, ABA therapy – 2 hours

Wednesday: ABA therapy – 2 hours

Thursday: Playgroup/Parent Group – 2 hours (ABA during this), Occupational Therapy – 1 hour

Friday: ABA therapy – 2 hours

Except for Tuesday’s OT and Thursday’s group, these all occur in the home.

I feel guilty having negative feelings about this because I know there are families out there fighting tooth and nail for ANY services, yet here my son is blessed by abundance. What he needs is found for him, but there is a price for that.

When he’s not in therapy, I have to do life stuff. The apartment always looks moments away from being condemned. The last time I looked like a respectable adult was I do not even know when. I drown myself in research and paperwork, constantly signing up to learn more and more and more because every ounce of knowledge could be that one tool in the tool box that helps break J wide open or at least gives him enough relief from his struggles to focus on being present and playful.

My dedication has been both praised and mocked. I am not a martyr. I am doing nothing more than any other loving parent would do, I believe. This does not mean I deserve to feel so lost and so unsupported.

So I do what any other normal human would do and pour my heart out to the anonymous internet. That’s sane, right?

I lay my soul bare on this matter because I know I simply cannot be alone. There’s likely at least one other primary caregiver – mom, dad, grandma, grandpa, auntie, uncle, foster parent, whoever – who is feeling the same way and is as scared as I was (and am!) to put a voice to the darkest feelings in their heart.

I love my son. He is why I do everything I do. He deserves all that I did not have: someone to fight for him, to seek all hat he needs in this world and to be there by his side no matter what. He challenges and frustrates me and there’s some days it is ever so tempting to stick him in a box and mail him away to the first person who’d take him but in the end, he is so very much my world.

I just wish I could have, you know, a day off once in a blue moon. Maybe even just once every other month.

This job, alas, did not come with that sort of benefits package.

Edited to add: J’s fever broke late Friday night or early Saturday. He’s still got a yucky cough but is doing much, MUCH better. Thank heavens.

What a Week

This past Tuesday, we visited the ER in the wee hours of the morning. I wrote about how frustrating that experience was.

Wednesday afternoon, J spiked a violent fever and would not accept fluids. His diapers were dry, he was starting to vomit up what little he had taken in… We returned to the ER. 

The experiences were night and day. This is why we should in future seek out a pediatric ER that is open in the middle of the night. This hospital, while great, closes the pediatric ER at midnight. 

The nurse was warm, understanding and respectful of J. The doctor was thorough, compassionate and most of all she listened. When I expressed concern about his throat, she braved checking it even though he hated it. She noted that because he is non-verbal, she was going to be a bit more thorough than usual which was fine by me. He had a chest x-ray and abdominal x-ray, both of which were handled by a very gentle and very patient radiology tech. I held him, she coaxed calm from him and between us the experience was not nearly so awful as it could have been.

Both x-rays came back clear, too. Major phew.

Apparently there is a violent virus going around and if there is a violent virus going around it comes to visit poor little bear. His doctor noted at our follow up yesterday that this fever might linger, as it had already, but knock on wood he’s seeming alright this morning.

I am up to my eyeballs in vomit and mucous stained laundry. I am wearing hot pink sweatpants because that’s all I had clean. I cannot remember the last hot, good meal I had. 

But the fever is down. He’s showing signs of his usual mischief. He just dragged his snotty nose across the top edge of my laptop screen (OMG REALLY?! guh. yes I took time to sanitize the daylights out of THAT maneuver).  He will have a bath later and hopefully we will have a nice if low key Easter.

Happy Passover, Happy Easter, Happy Spring, Happy whatever holiday you might celebrate this time of year and if there’s none – Happy Saturday and enjoy the Feast of St. Markdowns on Monday.

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