J-Bear and Me

learning to navigate the world, j-bear style

Month: April 2013 (page 1 of 2)

Sharing the Story

So last night, I finally got the beginning of our fundraising page added to the blog.

You can find it here.

This is where I need you, Internet.

Help us share the story. Help people see my little boy, for if more people can know and share in his story even more people can help. If they can’t help, they too can share. If they can’t help, maybe they can be helped by it because many of you know as well as I do how many children are out there struggling with various special needs. They might be well served by a service dog. Their moms or dads might be well served by finding another parent who is on a similar journey and is willing to talk and trade tales with them.

We never know how we can help until we try, after all.

Our goal is to raise $13,000. This goal will allow a dog to be trained for my son and come into our home, hopefully allowing new worlds to open up for my son. This journey is not one I expect to be easy, for dogs are beings all their own and require as much love and care as my child does, but it is one whose work will be immeasurably worth it.

Please help me share our story so we can do this all together.

Thank you.

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yes, we really are this goofy

“If you think my hands are full you should see my heart” — unknown

Sleep Study Verdict: Yuck.

This week has been a Week. This month has been a Month. Seriously, in any way, has anyone caught a break? It just seems like April 2013 is one of those months everyone I know wants to see the end of, tout suite. (thanks Wreck It Ralph)

J had his sleep study Wednesday night. He was very brave as the tech, who was a wonderful woman by the way, put on all the leads and such. All of the leads except for the cannula and the blood oxygen monitor were placed before he went to sleep. He cried but stayed still in my arms as everything but those two were placed and he watched Wreck It Ralph with me on his iPad. Then, when she was done, he and I cuddled down and watched more of the movie til he curled in and fell asleep.

It was all too easy, I was soon to learn.

The tech placed the cannula initially with no problem… until she came around to the other side of his sweetly sleeping self and found it was placed wrong. Unfortunately, it was taped in place by then. She had to untape it, which woke him up. Oh, the screaming. You’d have thought he was on fire. The way he panics tears my heart into a million pieces without fail. We got the cannula placed and the blood oxygen monitor on him but he was Not Happy. He would sleep off and on from there but always awaken at some point crying over the cannula and monitor. 

Then 4 o’clock ran around. He was more awake than previous times but otherwise nothing was different. That was til he vomitted. Big time.

When you’re in these rooms you’re watched on camera and they can hear what you’re doing in the room so I just kept saying help. I was sitting in the way of their view of his when he puked and he makes no sound when he does it, so they had no idea til they ran in and saw, well, the aftermath. 

Our choices at this point were slim, given all the leads on his head: Take everything off and  put it all back on again, cut off his pajama shirt and thus only reaffix the few leads that had been truly disturbed/made gross, or end the study altogether. His tech and one of the other techs coordinated between one another to find out if they had a good study for him and, thank all I hold holy, they had over 7 hours of study – the minimum they needed was 6. We took off all the offending items and we were allowed to sleep in an empty study room next door, where J would not allow me to be more than 3 centimeters away for the next few hours til we could go home.

The downside now is that we wait til May 17th for results but I figured it would be a case like that. If there was anything concerning I am trusting his doctors to give us a call. 

Oh, yeah. And I’m so done with vomit. Like I wasn’t before.

—————-

I have a lot I am working on that doesn’t show tangible results here or anywhere yet but trust me, I am working on it. I am eager to get the fundraising for 4 Paws to help get J and other children their dogs into full swing. This will include a page on this blog dedicated to the effort and regular updates on our Facebook page.

What? You didn’t know we had a Facebook page? That’s cause we’re not big and famous, I bet… Look in the sidebar on the right, the option to “like” this blog over there is in it. 

I am also a Thirty-One Gifts Independent Consultant, so 20% of all my sales going forward will be donated to 4 Paws for Ability to help this effort. Are you interested in bags and home organization items, plus oh so much more? Check out my site here and look under My Parties – I will try to keep public parties going for those who are interested. You can also host a fundraising party online or via catalog if you’re not local – Contact me via the site and we can work it out. 4 Paws gets needed funds, J gets closer to his dog, and you can earn some free goodies. Win/Win, right? 

 Please note: None of the views expressed on this page are that of Thirty-One. I do this all on my own. They just let me sell their awesome products and have a lot of fun with great people.

Busy, Busy

There’s so much to say lately and not enough words with which to say it.

I am working on a fundraising page for 4 Paws for Ability in J’s honor, so that we can meet our fundraising requirement to see him to getting his dog. I keep worrying that I may be portraying myself as someone who sees this dog as a magic band-aid for the struggles we go through daily. He or she simply won’t be. They’ll be another ally to help me make his life easier and better. They’re an ally who will bring a lot of work with them, to be sure, but all of the work that will be required to make their life good is work that would make all of our lives good.

That’s something I can commit to, along with soggy paws and fighting chewing. 

J has a trip to the zoo tomorrow, weather permitting, then a speech evaluation for the schools on Wednesday followed immediately by an ABA session then a sleep study that night.

We’re not jam packing things in or anything, right?

And amidst all this I have to admit, I am flat out beat down and drained feeling. Last week took a strange toll on a lot of people in this area, not the least of which seems to be the fact that it feels like I lost a week and imagine others do too. I cannot remember when I made phone calls, etc. I have to get back on the ball and hope that his OT/Speech clinic hasn’t labelled me Public Enemy 1 for all the messed up-ness that seem inherant to dealing with J and I. 

Here’s hoping that Wednesday goes well.

And that I can write better entries soon.

And finish that page.

And have a nice cold drink on a warm beach somewhere.

I can dream, right?

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having fun at the very quiet mall

PTSD

There is a sad thing I fear that I am going to be now sharing with the survivors, witnesses and first responders of this past week in Boston and that is Post Traumatic Stress Disorder.

I write this to all of you.

There are many hard things I have done in my life but I count trying to explain the major disconnect; the major fear, terror and agony going on in my brain as one of the hardest. Sure, the media portrays PTSD in simplistic fashion, showing flashbacks to events that caused trauma, and that’s a very bare bones way of showing the truth of PTSD features but it’s not the whole story.

The fear, the anxiety, the horror, the everything you lived through in those moments that caused you such damaging terror can come back to haunt you in ways you least expect. They can sneak back into your world on a clear sunny day where one detail can spark your mind’s return to those moments. You’re physically operating in the here, now, today of things but your mentally operating in the fear response of those horrifying moments, reacting to situations that are now ghosts haunting your memory. Your brain does not know how to let go of that response and like an engine stuck in gear, it remains there, holding you captive in a moment you logically do not for anything in this whole world want to relive.

That is how it is for me. That is how I spent years of my life living. It took the birth of my son and reactions I had in the year after it to realize what I was even doing. It took me too long, way too long, to get help. I did not have the support I needed, in some cases because I did not know how to ask, in other cases because I believed that in all truth I was simply broken.

This is not what I want for you. 

I want you to be free. I want you to face the trauma that occured, in your time and fashion, and I want to see you come through on the other side changed but strong. I want to see you supported and carried through so long as you need those shoulders to lean on. I want you to know that it is so very okay to ask for help; to ask for someone to talk it out with. You are not less of a man or woman for asking it but instead better and stronger for it.

Heal your bodies and also, heal your minds. You deserve that. Life will never be the same, or like it never happened, but it will go on, and it will get better. Tomorrow may be hard, and so may many tomorrows to come, but each can and will get easier.

And if you need someone to hold your hand or to listen to you when you’re scared in the dark of night or even if you just want a stranger who will not judge you for your fears, reactions and emotions right now… Hey. I’m here. My email is galebird(at)gmail.com. 

My thoughts and prayers are with all of those touched by the Boston Marathon bombings, the explosion in West, Texas, and the other tragedies that unfold around the world. 

Hazy Morning Light

This morning and day feel surreal. They just do. Yesterday, I worked a baseball game and left it as hell unfolded blocks away. Lives were lost and others were unbelievably altered. People survived, but they will never live the life they once did the same way again.

Yet this morning, I woke up, and I approached a Tuesday like so many before it. Today we have occupational therapy in the morning and ABA at home in the afternoon. 

J and his peers showed me wonders, this morning. Three little boys, all struggling with different things yet all so deservedly ignorant of what happened in Boston yesterday. Three little boys, all so delighted to be in the presence of one another. For the sake of this entry, I’ll call them H and S, for I would never want their parents to feel their privacy invaded, even if my audience is small.

S is a charming little man, quite dapper in how he handles himself. He seems to be a lot like J in that they both have sweet, silly natures. H is a bundle of energy, exploding onto the scene with an exuberant shriek that I cannot help but to translate as “OH MY GOD YOU GUYS ARE HERE I AM SO HAPPY I CANNOT EVEN CONTAIN IT!”. I swear he just happens to be working in caps lock and, given that I do not have to deal with it for multiple hours a day, I find it hilarious and endearing. The three are close enough in age and skills that they fall in step with one another and work together despite being with individual therapists. They are each others best teachers and best motivators.

Yesterday changed nothing for them. J and S got together working in the back with one another and H joined them later. They filled the entire place with a sense of energy, warmth and excitement. Yes, they are a handful but today there was no therapy better on this earth than the warm, innocent and free laughter of three amazing little boys.

Thank you J, H and S. Thanks for reminding me, and hopefully everyone who saw you all today, what’s really important.

 

life with j-bear

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trains happen anywhere

Tragedy

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. 🙂

Just Visiting

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Helping out dear friends at Fenway a few days this month. Hope to write a decent post in the next few days!

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