J-Bear and Me

learning to navigate the world, j-bear style

Month: June 2014

Happy Happy Sad Happy Mad

Believe it or not, the title of this post could be considered directions from where we live to the Zakim Bunker Hill Bridge in Boston.

They’re in J-bear-ese, of course, but it’s still true.

We drive down I-93 south on a regular basis and there is nothing that J loves more in this world right now than to get into the car and drive down to “bridge”. Sometimes, any old bridge will do but more often than not it has to be his bridge, the majestic cable stay span of the Zakim in Boston.

The drive is amusing. Each street light is labelled “happy” because, when seen through his lens, they look like great big smiles. Then, as you get closer to the city, you come across “sad”, a span of streetlights where one side has lost its lamp. He chirps “I fix it!” every time we come across it. “Mad” appears when the “happy” streetlights change to a different sort and a few look like angry eyes.

This is most of our drives now, not just the ones into the city. He sees happy, sad or mad in so many shapes and places. He can spot a school bus at an incredible distance. He can notice all sorts of landscape details but he labels them all in his own manner so sometimes it takes me a few passes until I fully comprehend the wonder he is showing me.

I love it.

I hope he always sees happy, sad and mad everywhere and that the world always holds such vivid yet benign personality. This is how J sees the world and it feels like a gift when he shares it with the rest of us.

—————

Little bear is currently struggling with a case of pneumonia, the poor kiddo. It started right on his birthday too and has yet to let him go. He’s on antibiotics that hopefully will get him right as rain again but as we wait for them to kick in he is so wildly out of sorts. I am glad I trusted my instinct in thinking his cough sounded unusually terrible rather than letting myself write it and his unusually out of sorts behavior off before it could get much worse.

Now to hope he’s back to himself before summer school begins in July!

My Sunbeam

May God grant you always a sunbeam to warm you  ~ Irish blessing

This post should be easy to write and yet is not. There is so much emotion that comes with discussing the past year of my son’s life. I do not know where to start, so why don’t we go back to the beginning. Birthdays are great for that.

J stormed into the world at 4:58pm after I had labored for days then struggled against what I know now to have been PTSD-related panic. My first memory of him is of him laying against my chest, clinging to my finger with his tiny fist as the world kind of went crazy around us. I promised him then and there we had one another and everything would be alright, no matter what.

It feels like we’ve been holding hands ever since.

When your child is born it’s like a blind date: You might know the gender, maybe even have a few hints about the person you’re about to meet but most is left to chance and fate. I knew I’d likely be having a little boy, and that he was going to be a chunky monkey but that was about it. The little boy I got didn’t look anything like any baby I might have ever imagined, but he was exactly who I was supposed to meet. Dark hair, grey eyes, chubby cheeks and a cheeky demeanor… He was perfect. He is perfect.

This past year I have watched J graduate from the care of Early Intervention, leaving the loving guidance of Virginia, Nicole, Jess, Catherine, Loretta, Dana and Nicole HB to move on to preschool. He took those first steps warily, fresh off having his tonsils and adenoids removed, but once he gained momentum he never looked back. He had everyone who loved him to guide him plus a whole new group of people who came to love him too. His therapists at Kioko remained a reassuring constant to us too, something that was instrumental to making this transition possible.

He broke his arm in late July and we learned a lot of good lessons, like AquaCasts are amazing and mama was wise to make sure Santa brought a trampoline to mitigate a little boy’s need for jumping and falling.

When school started in September I was nervous. The schedule is rigorous for him. 4 days of full day school, 1 half day of school, plus two private therapy sessions… When you’re a little mite, that’s a big schedule. He adapted and not only adapted but thrived under the guidance of amazing classroom staff. The foothold that his EI team had gained in terms of language allowed J to blow past his stated goals for the year in mere months! He uses speech simply but effectively. He follows simple instructions. He understands emotions. He identifies some needs and wants. He recognizes needs and wants in his peers and happily plays with other children.

That last phrase is huge. J had only fleeting interest in peers a year ago. Now, at the end of the day, he says bye to all his friends in class and they say bye to him. I get teary eyed every time it happens because there is little more beautiful to me. He has friends, and these little kids are amazing. I have watched them all grow so much this year and I am dopey but I am as proud of them as I am of J.

People pat me on the back and say “you did this”… but I didn’t. I drive him around. I make sure he gets where he needs to be and has the tools he needs. I help him, yes, but all this accomplishment is thanks to the support of remarkable professionals and his own determined will.

If the year between his third and fourth birthdays has been huge then the year between this birthday and the next is going to be borderline overwhelming. The strides he has made now will only continue, and hopefully expand further, as his dog comes home. It is you, internet, along with all our friends and family, that we have to thank for that blessing. You’ve helped to change his life even more, and all for the better.

He walks under the warmth of a sunbeam every day of his life, this boy. He has some tremendous guardian angels and tremendous family here around him. I am so amazed that he is my son and grateful every day for the blessing he is even when I am covered in snot and half deaf from a bad day. I am grateful for him exactly as he is and giddy to see exactly who he will become. He was born my sunshine boy with the storm cloud eyes and he will always be that boy, deep down inside, even when he’s 6’3 and able to bench press me.

babyfluffs

aww, baby fluffyhair

Happy birthday, baby boy.

Hi Buddy Runners!

On Saturday, wonderful people in Washington, Missouri, will be participating in the I Run 4 Buddy Run at their local YMCA. J’s buddy through I Run 4, Ximena, organized it and there will even be birthday cake at the finish line in honor of his birthday! This run supports Jacob and so many buddies as well as 4 Paws for Ability, an organization which we are very proud to be involved with.

This post is for Ximena and all the buddy runners:

Every day we each wake up with a battle. Some of our battles are huge, some are small, some are even quite odd or quite downright silly but they are just that – battles we must face. Some of us wear our battles on the outside for the world to see. Some of us, like Jacob, have battles that are harder to see or understand.

For those of you who are unfamiliar with autism it is a developmental disorder that impairs the senses and cognitive abilities of the brain. When you live with someone with autism, you quickly come to learn that it is not nearly as horrifying or scary or terrible as the media would have you to believe. It has boiled down to living with a child who is wired like a Mac in a world full of Windows machines. Sometimes, things translate effortlessly and other times they simply do not translate at all.

Four short years of life have been filled with tremendous strides for Jacob. Every mile his buddy Ximena runs for him he works hard to match finding ways to translate the way he operates into the world around him. We have been buddies with Ximena for six months and just to give a glimpse into the strides Jacob has taken, he has gone from being heavily reliant on sign and picture communication to being able to follow simple verbal instructions and explanations as well as to respond in kind. He speaks now, enough to have simple conversations with the people he is closest to, and he is slowly finding more and more pragmatic speech.

This is the battle he wakes up to every day and I have only rarely been blessed to meet someone who faces their world each day with a smile quite like his.

It is hard, as a mother, to watch your child struggle. It is even harder to live in fear for their safety and for their well-being. Autism leaves Jacob more susceptible to injury both by his inability to recognize dangerous situations and by his blindly trusting nature. His reactions when overstimulated also lead him into trouble, which is why last year we turned to 4 Paws for Ability to help us get him a service dog.

This October, Jacob’s short life will change again. He not only will have his running buddy but he will have his fur-ever buddy there to help support him on his journey. His dog will be trained in behavior disruption, tethering while under adult control and tracking should Jacob ever turn up missing. The gift 4 Paws offers families like ours is beyond what words can say. Many organizations would be at best reluctant to help children so young as he yet 4 Paws sees these children as very much in need and very able to be helped. They take pride in making the impossible, as they say, “paws-able” and give families like ours a sense of security and hope.

I am, as ever, overly wordy!

Thank you, for running today in support of I Run 4 and all its amazing runners and families and also for 4 Paws for Ability. Inspiration is sometimes all that can get us through the battles we each face, be it to tie on our shoes and get out there to run or to face a day in a world that is hard for us to always understand. Sometimes, we all just need to know that we’re in this together, and that our actions mean something to someone. Thank you for running and thank you for being there.

 

Echoes

J’s earliest steps towards spoken word were echoes of things he heard around him, specifically that which he heard on cartoons. It was barely even recognizable until you paid attention and realized it was not the literal syllables he was mimicking but the cadence and expression lent to those syllables. He could capture the mood and melody of speech but not the precise verbal components.

This was the base we had to work with, and it was a good one. It proved he heard all around him and how very involved he was. He was showing us that he was, indeed, always listening and always taking things in. The cartoons he mimicked scenes from gave him comfort. They were predictable, easy to understand. It makes sense when you view the world through a different lens.

Now, it is a year post Early Intervention almost and his way of speaking and interacting has changed and grown dramatically. This is most evident in his scripts. Scripts now have words and are clearly echoes of parts of his day. I hear things about school in his scripts, from how the teachers gently ask another child not to touch something to how another staff member is very sharp in demanding quiet from the children. There are still lines from cartoons and now even songs, filled with words and sounds rather than just sounds. It’s remarkable to behold.

Last week, he surprised me. He took his echolalia and turned it into pragmatic speech. He was chilling out as we were driving to his therapy session and whenever we go out, I begin our trip with explaining “okay, first we go (place #1) and then we go (place #2)!” in a cheerful manner. Sometimes this is with visuals but of late it has been without as he’s been doing fine without that extra support. Well, good sir J misses nothing. I had told him where we were going and when I said no to a request for ice cream, he perfectly parroted my manner of speaking when he chimed back with “First ice cream, then home!”

You clever little monkey.

I was laughing so hard, and so very proud. No, we did not get ice cream then go home. We went to therapy, THEN got ice cream and went home.

Last night as I laid down with him to help him go to sleep he was whispering something I could barely hear. I scooted closer and pretended to be asleep as I hugged him and he kept speaking quietly as he settled in to finally go to sleep himself. He was repeating all I usually say to him throughout the day. All the years of narrating our lives was condensed down into a few short minutes of perfect mimicry. It was all I could do not to cry. It was the biggest return on an investment I have ever had.

He’s always listened. I knew that. I never knew how much he retained, for children are children and mom’s voice can go in one ear and out the other at times. This wasn’t the case with J though. My words are there, right in his heart, he just needed time to find a way to show me that.

Without Words

J had a good but bad doctor appointment this morning.

We’ve returned to the GI clinic that saw him as a baby for help with his eating. He’s not gaining weight (again) and it’s just a struggle. His new GI doctor is fantastic. He has a cheerful disposition, is educated and understanding about autism and managed the to make a visit that was very frustrating to J as gentle as possible.

I could have talked to this doctor all day. It’s rare I meet a doctor like that!

Now, the doctor was fabulous but the clinic… not so much. The staff apart from the young lady who checked us in seemed like everything was overburdening, the nurses and assistants had no clue how to work with a kid dealing with sensory overload as J was and the building was HOT. Devil’s armpit hot.

Have I ever mentioned that J overheats easy? And doesn’t know what to do with it besides melt down?

Now pile that onto the fact we had to go for blood work and you realize we were destined to fail.

Picture if you will a closet in your home. Add to it some cabinetry and a table. Now stuff 4 adults and one screaming flailing child who doesn’t understand what’s happening into that closet. Turn the heat up to 90.

Then ask one of those adults, who has had some training, to get blood from the child.

This was what happened to us. It was HELL. The first phlebotomist was a damned nightmare. She DUG IN HIS ARM. Repeatedly. He was howling in sheer panic and I could not blame him. Then she complained she couldn’t get much and marched out. Thank God for the tech she brought back with her… That woman could get blood from a stone. She had him finished in no time. I wish she’d been the first to see him!

So after everyone involved lost 15 pounds of water weight we were done.

We went to Build a Bear, visited a play area, got donuts and came home. I am toast.

——————-

The title of this post refers to something that happened in the waiting room.

J does not sit still in waiting rooms. He moves around, stims, searches, explores. It is just how he operates to settle himself in an environment of uncertainty. My job is to make sure no one else gets bumped about. Today, he noticed a little girl who may have been close in age to him. She was in a stroller style wheelchair and smiled every time he looked her way.

He smiled back when  he caught her look and went over to sit beside her. Neither said anything. Neither needed to. They made a connection without words and merely enjoyed the presence of one another.

People spend a lot of time stressing “making” these kids talk in a conventional manner. I feel sad for them. They must not see how much they communicate without needing a single spoken word.

The Ups then Downs

Or downs then ups as today went.

There are some days you’re the dog and some days that you’re the hydrant and today, I was the hydrant. Thankfully just in a figurative sense, so I need to be thankful for little things.

We needed to do laundry. We needed to do laundry bad. You see, we rely on laundromat. We have for years. It’s an imperfect way of life but it is what it is and we make do. Today, the situation was getting pretty desperate and the way the past two weeks have gone it’s just been impossible to easily go. Today, I figured I’d pick J up from school then head to the laundromat. We’d talk it up, we’d take advantage of the fact that Dunkin’ Donuts (SERIOUSLY Dunks, let me be a spokesdonut for you!) because donuts cure-all and life would be good.

Yeah. Little did I know….

The environment of a laundromat is what it is. Flourescent lights, a constant low din, sometimes a lot of random people… It was going to be a challenge at the bare minimum. We arrived at a quiet time, so we were lucky on that count. We got in, got our quarters and started loading a washer.

He was doing great. He counted the fans (5! 5 ceiling fans!) and enjoyed looking around at various things. He watched me put in soap and quarters and turn the machine on.

That’s when the world ended. The poor kid…

It was hard to explain to him that the clothes were okay! The machine was just getting them clean and they’d be alright! I rocked him, cuddling him on my lap while he tugged at my hair to keep me close and he was inconsolable for a while. There was nothing about this environment he felt safe about while the clothes were washing and then I redid the trauma by starting the dryer. It was a mess.

Usually, in situations like this, I can carefully show him how things work and let him explore things to get a better feeling for them before continuing. This wasn’t possible in a laundromat. There was no safe means of doing so. My heart broke for him because he was clearly scared and overwhelmed. It did not help that it was very hot – something the attendant fixed quickly, thankfully! – but even without the warmth I think the meltdown would have happened.

We were just about done when he finally started to feel more like himself. He helped me get everything together and helped me get everything to the car. His reward for working so hard to get through it? His own box of Munchkins (he calls those donuts for those just joining us) and a drive into Boston to see his beloved bridge.

Add to this his new trick of bolting through parking lots and into traffic areas and we’re just having a bang up time. Soon, his match forms and video will go to 4 Paws because it’s just about the 4 month pre-class cut off date.

Dog, I cannot wait for you to get here.

Trust, Fear and Forgiveness

This is entirely a Mama post here, so it’s very off topic. This blog is nearly all about J and I’s experiences but it’s also my go-to for talking things out in a way. Please bear with me. 

We’ve all done it in our lives, trusting the wrong person and realizing way too late that we’d done so. When you grow up in an abusive home, trust is something you kind of learn third hand. It’s not something that was taught as being innate. I did not grow up with a natural trust of my parents, or of situations, or of … well, much. Trust was learned as a process as though it were a foreign language. I understand it better now, but my understanding will always be imperfect so when someone comes along and commits what amounts to a vast crime against it it does feel as serious as a deep physical wound.

I have struggled with this. I still am struggling with this. This person added to their crimes against the trust given to them the use of “forgiveness” to equal “absolution”. They would constantly demand to be forgiven, believing firmly that forgiveness meant what they did was okay.

That’s not what forgiveness means. That’s never what forgiveness has meant. Forgiveness means acknowledging something happened and chosing to move on from it. It is not leave given by the person doling out the forgiveness for the person receiving it to repeat the same actions that required forgiveness in the first place.

That is abusing trust. That is abuse, to continue to make someone believe they must forgive you for your bad actions or they are a terrible person even though you just use their good nature as an excuse to keep repeating the same offenses or worse.

I let this person into my head so much that they had me believing I was a terrible person, that I was a monster, that I was abusive when I would stand my ground and demand to be treated with respect and dignity. The amount of times I was sworn at or torn into verbally over just plain sticking to my guns and not doing as I was demanded is absolutely ridiculous. It should have stopped after the first, but this is my sin. I was stupid. I wanted to trust; to believe in the goodness of someone it turns out never deserved it.

So here I am.

The ache is less, but I do not believe it will ever be completely gone. It will not hurt in the way that some other things do. My heart aches over the loss of my Nana and others, for example, in a very different manner. I am sad to know I cannot hug them again or hear their voice, yet I have the solace of knowing they’re still always there around me. This pain, from what this person did, is deeper and sadder. I cannot regain the years and energy lost to this person. I cannot go back and re-see that which I should have seen at the start and prevented so much pain with.

But I can move forward. I know the truth of who and what they are now and in knowing, I also know it is they who have to live with it. Not me, now. Not ever again me. I get the gift of continuing with my life knowing the truth and being able to heal from the wounds caused of years of hearing what a terrible person I was. I trusted this person with too much truth you see, and I am learning not to give that out again. They took me at my weakest points and sharpened them into fine blades by which to try to keep me down; to try to make me controllable.

If my own father couldn’t manage that, there was no way in hell this person was going to pull it off, especially not now with too much in the balance.

I’ve always been able to stand for others, to yell when they could not and to support them and help them through what they needed me for. I could never stand for myself, not with true strength and conviction. Then J came along.

Now I have to stand for myself and be true to what I need, what I want, and what will make our futures the best.

I think that scared this person. Independence always did.

I will never say whether I forgive this person or not. That’s a matter that belongs known to my heart and my heart alone until they might, on some unlikely day, learn what the word truly means. I will move on, as I have been, and I will love my son every day all the more for the strength that little boy has given me. I’ll close the door on this person once and for all and should they try to snake it open….

Well, opening things they weren’t welcome to didn’t work out well for Pandora, so I cannot imagine it will work out for them either.

Please forgive the lack of comment section. Not sure I am ready to open this one up for discussion. – N

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