Our world is different from yours. We walk among you and try to participate, but it takes so much more on our part. Our struggles are daily. Our grief is cyclical and sometimes feels never-ending. Our pain runs deep, and we are forced to face a future of uncertainty and worry. The stress can be overwhelming at times. But just when it seems like you can’t go on, a moment of joy happens, and you find some peace.

I have always said I will do as much as I can for as long as I can because the day I stop, so does the protection for my son. I don’t get days off. I don’t get to put my son’s disabilities on the back burner and put my needs first because there are too many battles to fight, too many lessons to learn, and too much advocating to do. I have found my tribes and my allies. I have reinvented myself countless times along this journey. Sometimes I wonder how many times I’ll have to start over, how long I’ll have to keep making sacrifices, and when I’ll get my life back. I know, deep down, the answer is never. Things will never go back to the way they were, and I will never be the person that I used to be. Life has changed me, but for the better. My son has made me more tolerant, more forgiving, and more confident.

Over the years, I have learned how to cope with my situation and use it to my advantage. I have made a career out of taking care of him, getting the support and assistance he needs, and advocating for changes where they need to be made. I am very good at what I do. I was recently told that if I don’t do this, who will? Sometimes I feel like I’m the only one who speaks up, who advocates for change, who cares, but I know there are others in the same situation who feel the same way. I am proud to be a voice for them and for everyone who struggles to find their voice. I have found mine and am not afraid to use it.

When you look back on your life, you wonder why things happened the way they did. My experience on the debate team in junior high is really paying off. Writing for the school newspaper in high school and working on the yearbook staff have been put to good use. I have contributed to several newsletters, publications, blogs, annual reports, and even a few yearbooks. However, I still have not found a good use for Algebra. Working for several very demanding bosses in a corporate environment who expected perfection consistently has taught me to read every line, check every document, and be extremely organized. Participating in leadership programs in high school and earning my Girl Scout Silver Award in leadership has laid the foundation for me to be the community leader I am today. I strive to learn from others, be part of my community, give back, and make the world a better place in some small way. I hope that my advocating and helping others has made this bumpy road a little smoother for someone else.

Having a child with disabilities is not a blessing, but it has its silver linings. I do what I do because I must. I do what I do because it is right and just. My son deserves a good quality of life. This unexpected path has forced me to make choices and do things that no parent should ever have to do for their child. It has strengthened my marriage because we either do this together or apart. Apart is not an option.

Like any good parent, I’m doing my best to set my son up for a successful future. He has an outstanding educational team at the Texas School for the Blind and Visually Impaired (TSBVI). They have not only improved my son’s life and outcome, but have also helped me to grow as a leader, provided me with advocacy opportunities, and taught me how to work with my son at his level. For me, his graduation next year will be bittersweet. We will be losing this support and much-needed respite. After graduation, my son won’t go off to college, get married, move out, or become independent. He will return to me, and I will go back to work full time. I’m never able to fully switch off when he’s home. I remain in a constant state of alertness. Always waiting for the other shoe to drop, always preparing for the next battle, and always ready to come to his aid. I will return to the car rider lane. Dropping him off daily at a day program so he can have a meaningful and purposeful life.

While I have his immediate future mapped out, the remainder of his life is extremely difficult. Finding a place for him, a community free of abuse and neglect. Free for him to live a safe, joyous life. The cost is astronomical. The stress is overwhelming. Due to the immediate loss of my career at the time of his birth, my once prosperous income was gone. Never to be reclaimed. I must rely on a waitlist 15-20 years long for services that may or may not be funded when they become available to me. It is hard to plan for his future with so much uncertainty. Yet I go on. Trying to remain positive that it will all work out. I am a person who makes things happen. Always making a square peg fit into a round hole, but his future planning is so complicated with so many moving pieces and so few options to choose from.

So, this is where I am—looking back at my life, learning from my mistakes, continuing to overcome a deck stacked against me. Moving forward by swimming upstream. As my son transitions at each stage of his life, so do I. Meeting new allies, building new communities, creating new experiences, gaining more knowledge, and finding new family. It truly takes a village, one that gives you what you need when you need it most. One that understands you and one that you create by sheer willpower. I know I will find his place, his family, his future home. Still, in the meantime, we will continue down this path, learning, growing, and adapting to this ever-changing world, hoping that the uncertainties will lessen and the future will become clearer.

Barbara Knighton, 4bknighton@gmail.com

It’s that time of year: Elective selection for next year. He says he wants Band, Theater and AFJrROTC. It won’t all fit. Not in regard to time of day nor in regard to modifications/accommodations. The military doesn’t modify, ever. He has been talking about ROTC for a long time. He has friends there, the uniforms look wonderful, and he can feel the camaraderie.

You may remember that if your grades suffer, so will your extracurricular activities, and quickly: Within the first 5 weeks of the school year. So if you get in academic trouble early, it’s quite hard to dig your way out fast.

He really should pick something besides AFJrROTC, for many reasons. Maybe the computer scheduling will make that forced decision for him. It just can’t be Mom telling him to give up on a dream and be practical. The school and I all know it’s all a long-shot for John, a stretch of his academic challenges, executive function and self-regulation. 

Our high school been excellent at giving John enough rope to earn it (or not).  He had been showing some behaviors that I interpreted as self-sabotaging in band this semester. I figured it was a coded message of frustration, as his skills (and his sentences) are behind his peers. Dyscalculia (affecting sequence, timing, patterns, counting, etc.) and other learning inefficiencies are alive and well at our house. There hasn’t been the expressive sentence of “Mom, I’m frustrated and I may want to give up next year”.

I told him he wasn’t a prisoner of band, and could pick something different next year but he would lose band and not get it back. There must have been some truth in all that, as he’s doing much better now in his choices and wants to stay in.

So, we filled out next year’s elective forms and will see where the schedule allows John.  There’s a lot I don’t know, but I do know that these last two years will important opportunities for John to earn experiences.  The LEA knows we work hard on interventions in our non-school hours.

At home and with his private team, if he fails academically, we won’t grieve but instead we will be glad that he had an honest try at the best life of inclusion he can earn each year.  
Our LEA team has been stellar, the law is here and we appreciate the quandaries they face.
He must treat each teacher and class with high respect and his best decisions.  
We train for natural consequences.

Speaking of all that, his most recent essay is “How to Earn a Girlfriend”. We have lots of puberty natural consequences to work through, as well as all social ones.

It won’t be John’s GPA that makes his life. 
It will be all the social EQ, executive function, auditory processing, best choices, and friendships he can create and keep.

Part 2: As it turns out, he has recently been self-advocating, verbally, boldly, that he wants one of the entrepreneurial electives in Specialized Instruction. {It can also be described as Coffee Cart in Special Education.}

The rejected elective option is Art, which has never been anything he valued. Arts and crafts to him have always been a bridge too far, something to get through as hastily as possible. Creating art continues to be a fine motor challenge.

We have just had a life-planning transition meeting, and it turns out he’s delighted with Coffee Cart Entrepreneurship. Not what Mom would choose, but, hey, it isn’t my life.

This will be his way for his natural strengths to start to blossom … but it doesn’t seal his fate. He’s quite happy for the opportunity, the training and the friends.

Mom is listening better because he is advocating better. I don’t always have to read his mind through his behavior. (Do you have that at your home?)

We still are working on that girlfriend thing. I am telling him, “in college”, and that he can practice now by using good manners, personal space, kindness and sentences. I will keep you posted.

With respect and gratitude,
Gayle

Here’s something to try with our young digital addicts. It really works at this house.

John has a daily list of stuff to do before he gets to goof off (electronically, most likely). Some of these daily tasks have minutes, so the phone timer is our daily companion for self-regulation.

I wish he was as good at analog time-telling as he is at digital time. We really struggle with the long hand and the short hand, sadly. He is also using the phone calendar function to keep himself on track, but I digress.

So, for example, reading is 15 minutes. He sets his own timer, to learn to be ever-more independent, his own executive function.

We spend a lot of time together in the car, doing his list. He will interrupt himself reading (aloud or silently) to lay a big sales pitch or renegotiation on Mom.

I have learned to use a variety of facial micro-expressions, all a part of his social-emotional learning (SEL). I have also learned to use the fewest number of words, because ….. well ….. words beget more words. Since I want him to refocus on his reading (in this example), I will ask “pause?” He doesn’t want pause because he has learned that stops the clock.

When this works the best, he will immediately say “resume”, and get back to his task. You see, I didn’t say “quit talking and get to work” (or anything similar). I used one word to ask him a time question.

He really wants that list done.

We take a lot of old-fashioned learning in the car when we drive. We have hardcopy of his band percussion assignments, drumsticks, some dog-eared Harry Potter paperbacks (pages dropping out by the day), and the device he uses for IXL, our on-going academic supplement. (Check it out, it might work for you. You choose the grade, the subject to study, you get analytics to share back to the school district, and it costs about $10/month.)

So, tools are ever at hand. Mom just asks “Pause?”, he says “Resume!”, and starts himself back on task.

I will admit this does loop a lot.

He may want “to talk”, and that is his choice, resulting in a Pause we can both live with. With the phone timer the bad guy, I try to make all this not my job. If he “wants to waste your evening, that’s OK with me”.

I do have to be mindful to disconnect my list from his list. If I fail in this, I get frustrated.

We work on time awareness constantly. We know early intervention is hugely important.

And yet, each day ticks by, toward adult “independence”, whatever that will look like.

That keeps us worried.

Peace be with us,

Gayle

And everything he did blew right through my expectations.

Silly mom me, I had hoped for a rosy-glow sort of last Spirit Day launch.

Ha!

You know how that goes, don’t you?

In every direction, he didn’t do as I would hope.

I could give you a list, but my blood pressure will go back up.

Last night, at a band booster parent initiation, I learned a neurotypical young man, several years older than John, does some of the things that John does.

When I hear such great news, it is a gift to my peace-of-mind.

Dorky, cave-boy teenager things. Could this be normal? Typical?

Our therapy and interventions world has a forward-push, compliance mindset. Right?

Pretty rigid.

This morning, John was way past zoo animal. I have seen better behavior out of chimpanzees.

Such boy-stupid stuff could be happening in other, neurotypical homes?

No words for this sense of relief.

So, as he went running for the bus looking exactly like a motor-planning Mr. Bean movie before my eyes,

it was a wonder he had everything.

Yes, of course, all in the wrong place according to “the plan”, whatever that is.

Still, all in his arms, and he was laughing.

In 30 seconds, we met in the middle for the forgotten mask hand-off.

I then told him to go faster.

Forgot to say I love him forever. That is my shame.

Not that the morning wasn’t to my “expectation”, but that I forgot the most important words of the day.

I sure hope he comes home today as usual. I have some mending to do to my spirit.

He probably didn’t notice? Or did he?

Peace to us all,

Gayle