J-Bear and Me

learning to navigate the world, j-bear style

Author: galebird (page 1 of 5)

The Hard Parts

There are things that are going to be hard regardless of autism in our lives.

Today, it was a blood draw for a couple of genetic screenings.

There is nothing that can prepare you for these types of things. You know you are doing what is right for your child and yet everything in you is screaming “TAKE YOUR CHILD AND RUN!” even as you sit there, holding them still through something that obviously pains them.

I hate it.

He does not have the words to say he’s hurt or scared. His crystal expression, his anguished cries, all of it is eloquent enough. I can’t explain any of it to him. I can’t walk him through the bit by bit of what’s about to happen, how well he’s doing when it happens, and encourage him to realize how fast he’ll be okay again when it is all done.

This does not stop me. Even as I cry along with him, I whisper in his hear how good he’s doing and how strong and good he is. I whisper how it will all be done soon, how he’s such a brave and sweet boy and how sorry I am he has to do this.

And he wails. Tears stream down his cheeks and he cries, desperate for escape and peace. He hyperventilates and almost vomits. He can’t control his reactions and I cannot blame him for it. I am overwhelmed too.

But he did it. He got through it. It’s done, for now, and hopefully for a long while.

Blood draws, EEGs, sleep studies, physical examinations… The cost of his diagnosis is not one measured effectively by looking at bank statements and hospital bills. It is best judged by the physical, emotional, and spiritual toll. It is brutal that getting him appropriate physical care is painful and terrifying to him. It’s a trauma, no matter how minor, to bring him to the doctor and put him through the visits and it’s a trauma that is not just to him but to myself, but I have to remain strong. I have to do it. I have to hold his hand and see him through it.

But my heart hurts.

He’s my son; he’s my sweet and darling baby boy. It is my duty to protect and nurture him but I won’t deny the pain I am filled with when doing right tears me to pieces inside.

We have one more medical visit this month, May 17th, and we’ll know then how we are proceeding in regards to his tonsils. This might all get significantly harder before it gets better. I just have to buck up and get through this and learn not to cry in front of the medical professionals who think I am insane when I end up crying right alongside my wailing child.

Whirling Dervish

That is what this week feels like. I am starting to believe that all weeks are going to feel this way: chaotic whirling dervishes that leave me so turned around by the end of them that I am not even sure where’s start and where’s stop. 

But this is life, and J never rests.

Tomorrow is something like this: 

— Speech therapy

— Genetic Screening in Boston

— ABA 

Now, do you think he’ll nap anywhere in any of that? Because it would be my fondest dream that he would but let’s face it: all kids J’s age run on their own agenda, the only difference between my guy in most is that he doesn’t care to often share what that agenda is going to be.

We will get through it though and and hopefully it won’t be so bad.

On the fundraising front we’ve broken $800! Every single step that brings us closer to getting J united with a service dog is progress and all of it excites and elates me. I cannot wait til the day that I am writing to share his progress with his service dog with everyone who will have helped us get there. I can’t wait to spam you all with pictures of it too because, come on. Have you seen this kid? Him AND a dog… The cute, it will overwhelm.

Not that I am biased on his appeal or anything, being his mother and all.

T-shirts are in the works and I am very, very excited about them. The moment we have things ready I will be sure to update and share them with everyone so the word can be spread.

Now, I have to get back to fighting the good fight and figure out how to write letters to people I don’t really talk to begging them for their assistance. I am a party animal.

IEP Warfare: Shots across the Bow

Let me begin this post with a shout out to parents of children with IEPs across this great land:

You’re amazing. I don’t know how you’ve done this for years. For serious. 

Now, here’s what leads me to that shout out. Hunker down, it may be a long one.

J will transition to the public school system following his birthday in June. The recommendations laid out by the Center for Special Needs at Floating Hospital are pretty strict and pretty clear. Full year schooling. Extremely low teacher student ratio. ABA, Occupational and Speech therapies. Chances for interacting with larger, neurotypical peer groups. Before this process ever began, we had in hand current evaluations for J: OT evaluation, Center for Special Needs evaluation (where his autism diagnosis was refined and his Sensory Processing and Expressive/Receptive language disorder diagnoses were added) and within a few weeks a thorough Speech evaluation was added. This mom, she is prepared in terms of knowing what her son needs and being on top of being informed about his condition. Every report gets scanned into the computer, saved to Google Docs, and printed for all of his therapists to have on hand as well as the schools.

Our local schools had a meeting with us early in March to discuss how this process would play out. Their director of special education for preschool through fourth grade sat in the living room here and allowed us to question her. I immediately expressed concerns about my son being evaluated too much – that he already had a lot of current evaluations and every time we did one, it was no picnic for him. She said she understood and would read through all of the reports provided for her and set up something called an arena style evaluation. This means that several disciplines would meet with us and evaluate J at one time so as to prevent just what I was concerned about. It would be a one shot stop and while difficult, once it was done it would be done. The only separate thing would be to observe him at his weekly playgroup.

Great, I thought! This wouldn’t be so bad! I was feeling a little more optimistic about the process ahead of us.

And then it all fell apart.

A letter came stating that they wanted a separate speech evaluation, a separate occupational therapy evaluation and they wanted the observation. I was stunned. This was nothing like what was described, yet my hands were tied. We only have a finite amount of time to get this all done after all. I reluctantly consented to the multiple evaluations and waited to hear back from the schools. 

The occupational therapist and the speech therapist were prompt in reaching me and the appointments were made easily. Both of these ladies were extremely professional, kind, and J took warmly to them even though he struggled mightily at each evaluation. 

No one amidst this has ever talked to me about going to playgroup. This group takes place once a week and hey, there’s only so many of them left before we need this IEP to be drawn up and consented to. I never heard a peep. I walked into J’s speech evaluation however and was blindsided by the school psychologist and the BCBA who decided it was time to grill me or something. I have no idea why I had to answer all the questions I did answer. They pretty much ran me through every autism checklist I have already gone through with various professionals before. It sincerely feels as though they were trying to get me to answer somehow differently, like J doesn’t actually have autism and his diagnosis is full of baloney.

Yeah, cause what this kid goes through every day is a freakin’ joke. 

During this meeting and questioning I did mention, quite clearly, that that very evening J had his sleep study scheduled and we were not looking forward to it. 

… So when the school psychologist and BCBA showed up at playgroup the following day, why were they shocked that J wasn’t there? And furthermore, why did I get the nastiest voicemail accusing me of keeping J away from group on purpose (wtf is that?) and telling me they were going to be there the 9th of May and I had best let them know in advance if he’s not going to be there.

What. I can’t even with these people.

The schools informed early intervention, the people who run the group, that they were coming. Not me, his mother, who keeps his calendar and schedule pretty thoroughly. If they had even thought to give me a shout they’d have known he would not be there that day due to the study the night before. 

Now I am engaged in a back and forth of passive aggressive email replies and voice mails. 

This is what makes me the most angry: In just about two short months I have to trust these people with the welfare of my son during his school day. I have to believe his needs will be met and he will be well cared for. These are people who cannot even get communication correct with me, and I have to trust them with his every need for several hours a day? I know these aren’t the classroom teachers but when the people running the show behave this poorly, it reflects on all involved. If they have such little respect for me, his mother, how can I believe they will have respect for him and his classmates? How can I believe they will teach these children to respect others and to expect to be respected in and of themselves?

My level of disgust runs so high right now that I just wrote this long entry to get some of it out. My son does need a lot of support going in to school. He deserves this support. If this means I am going to have to fight to get it, well, so be it. A fight it shall be.

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

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