learning to navigate the world, j-bear style

Month: August 2013 (Page 3 of 3)

A Follow-Up and Miscellany

I poked a bees nest I think!

My last post talking to supporters of caretakers… The response surprised me. (Mary, I owe you a note!)

I’m okay. I promise, I am okay. Things aren’t perfect but they are okay. I’m plugging along, frustrated with my body and my surgery but otherwise okay. This is a life I am used to. It really is. What drove me to write was knowing that others are not. They aren’t getting the support they need and I know that sometimes people don’t know how to handle that.

All around, it’s a tough situation but it’s not one we can’t get through together.

There’s a Thirty-One party going on on my Thirty-One site taking advantage of the end of the summer catalog and some fun August specials. 20% of sales goes to Team Jacobly and we’ve raised $68 so far.

There’ll be more fundraising updates soon I hope. I am waiting on talking to a few great people about some ideas and will post developments as they occur. Would it be out of line to plaster J’s cast with sponsorships for the next few weeks?

Okay we’re not that desperate…

… or ARE WE?!

Stay tuned.

Supporters of Caretakers, Lend Me Thine Ear

So, when you’re in a situation where there is a special needs child or adult, there’s always the primary caretaker or caretakers. There’s that one or maybe two go-to people who coordinate all of the various care this person needs: the doctors, the therapists, the care plans, the IEPs/IFSPs, the schedules, the special diets, so on and so forth. They are the guardian of the calendar and the people possessed with the subject matter expertise required to give their precious person an amazing quality of life.

Then there’s the people who support both the primary caretaker(s) and the person being cared for. They’re the partner parent, the significant other, the friends, the relatives, the loved ones, the siblings… The family members, by blood or choice, who are there to step in whenever needed. It’s you who I write this to.

There is a unique level of stress that lays on the shoulders of the primary caregiver. The problem with expressing that is that it is our job as that primary caregiver to make it look easy. Frequently, we look like we have everything totally in control. We make a difficult situation look commonplace and simple when it is anything but. We become masters of juggling while balancing plates on sticks.

Sometimes, those plates come crashing down.

This is when we need support.

I know, I know, it’s hard for outsiders to see when those plates are about to fall. I am forever guilty of this. I am terrible at asking for help to begin with so I rarely show signs of crisis until the plates have all fallen and shattered. I know I am not alone in being that way. We all do it for different reasons I am sure but, such as it is, we need help to step in before the proverbial dung hits the proverbial fan.

What can you do? Listen. Please listen. Please respect the stress that comes with being “on” 24/7. It may not seem like we are, but when you have a loved one who wanders, or is medically complicated, or whose care requires repeated night wakings, or any combination of any of this you rarely to never get to truly have a break from it. You, as a human being yourself, begin to lose your identity amid giving the level of care to the person who needs and deserves it. You begin to forget who you are, what it is to relax… You begin to suffer from within, usually not noticing the suffering until it has gone so far that the pain is hard to heal. This is when resentment, depression, anger, sorrow… This is when the darkness eclipses the light and a healthy situation becomes toxic.

Family, friends, loved ones… When we ask for a break, please, respect that if we’re asking it is because we’re truly in need. This break doesn’t have to be huge. It can be as small as half an hour by ourselves to do something as simple as enjoy a leisurely shower or a couple of hours where all we need to worry about is reading a book or sitting staring blankly at the wall. When we call you crying because we think we are failing or are at the end of what we have to offer, hold us up. Encourage us. Remind us that we have got this and that you’ll see us through. Let us lean on you when we’re weak so we can rest enough to be strong again.

We, the primary caregivers, run on a crisis high most of our days. It is when life is calm that we need your support most. The hormones the body releases to run on crisis can and do cease once in a while and that is when we crash. We stand the risk of falling apart because the reality of what we’ve been going through kicks in. It’s then we actually face our panic and anxiety. Support us. Be there for us. Listen, love and care.

A lot of us, myself included, do not bring in paychecks. We do not contribute to the household in a way that is materially tangible. It is hard to quantify what it is we do for a living when, in fact, we do a lot. Respect that we are not sitting around the house all day, especially when you come in and find the house a mess and nothing appearing to have been done. I will tell you first hand that days like that it’s either because the day focused on other care or, if it’s been in the past 8 weeks, it’s because I’m sick too. We prioritize differently than you might expect to make what is best for our loved ones happen and it is damaging to have that insulted or diminished.

The point of my disorganized thinking is that caregivers need care too. Please don’t lose sight of the strain of our role as you wish us not to lose sight of the strains in your life. Make the support you offer true, loving and unconditional. That gift alone is priceless and makes the quality of life of the person we both love that much better. In the long run, it will reduce strain on all sides and thus make us all happier.

I feel that to be a great return on the emotional and time investment, don’t you?

Communication and Speech

I write off and on about J-bear’s communication. I have written about how he is non-verbal but not quiet on several occasions. It’s a major portion of life with him, recognizing this fact, so I suspect that if I sat down and really looked through all my babbling I’d find a lot more about this subject than I think right now.

Wandering the internet there were several discussions in several separate locations about communication. It focused on how speech driven a lot of the therapy given to children on the spectrum is rather it being communication driven. The conversations were interesting and most of all, they were true. Spoken word is the common manner with which we communicate but it is not the only way we communicate nor is it the only way we can effectively communicate. It is common thus it becomes the enforced norm as it is easiest on all else involved.

Except when it isn’t.

What I read was from family members of people on the spectrum and people who are themselves on the spectrum. Their points were valid and brought up my own feelings on the subject: Speech is not the end all be all.

Now, I want my son’s life to have as much ease as possible. I want people to enjoy the same understanding of him as I do but that is not realistic. I am with him the bulk of his days. I have spoken J-bear since the first moments of his life. I have the benefits and blessings of knowing how to read every bit of communication he has with almost complete fluency. This spoils me to a point, I suppose. I am open to accepting that truth. I am also open to the fact that speech might never be his main method of communication.

That’s okay.

My son was born with a manner of being that makes what is easy for most not easy for him. If using a communication device, using picture communication systems, using sign language, using spoken words, using gestures, using smoke signals, using Morse Code, using whatever works allows him to get what’s going on with him across then so be it. It will not be easy for others but that’s not what this is about. It’s his life, not mine or any others. If it works for him it is then my job to help work on being there to support his needs and support making what works for him effective to the world around him.

It’s not perfect. I envision a lot of uphill battles and frustrating events in my future. This is what was given to me the day I was given my son to love. There’s no nobility in it for it is what you do for your child, no more and no less. My child just happens to have different needs and it is my job, as his mother, to adapt and give him every tool and advantage I can manage to see him flourish.

He will flourish. I know deep down that one day he’ll tell me some amazing stories. The way he already laughs, smiles and engages without many words shows me that without a doubt. His mind is so beautiful; so clever and quick that once he cracks the code on how to share it with us all I bet we’ll all be highly amused and maybe even a little humbled. I can’t wait.

The Stages of Coping with Casts by J-bear

This is how this week has gone with J in terms of him getting used to having his (pretty purple) cast on his arm. Thoughts transcribed/guessed at by me obviously:

Stage 1: Anger

“This man is putting a thing on my arm. My arm hurts. HE IS PUTTING STUFF ON MY ARM. THE WORLD SHALL KNOW MY WRATH!”

Stage 2: Denial/Ignoring

The arm hangs limp and heavy at his side. “If I do not move it, this abhorrent thing is not really there.”

Stage 3: Frustration

“I WILL SWING THIS WILDLY TIL I AM COMFORTABLE”. Beware of accompanying flailing, especially while he is trying to sleep.

Stage 4: Indignant Acceptance

“If I chew on it mom will drop whatever she’s doing and come help me, so I will take advantage of this stupid thing.”

And there you have it. My week in a nutshell with a J in cast. He’s actually using the arm now these past two days, which is better than the “hanging there like it’s dead” stage he was in. He will move it to keep himself comfortable instead of leaving himself in awkward angles that caused nothing but pain. He even will attempt a high-five, which is funny because his elbow is cast with a slight bend.

Thank you to all I hold holy for the invention of “active casts”. I cannot wait to put this stinkbutt boy into the bathtub tonight and let him get his crazy out on a little water. He truly could use a dip in the ocean or a wave pool but we’ll take what we can get.

This is my life right now. We’re making the best of it and I’m still trying to get a good picture of him awake and in his cast to share with the world. The purple cast has to be remembered forever and always, after all.


Mama’s health is just not coming back as fast as hoped. I’ll get there, it’s just slow going. While me and J-bear both work on our respective recoveries, here’s a picture of my favorite little batboy:

just playing at my ballpark

just playing at my ballpark

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