Savouring

As I limp through the end of this literary May, finding myself here on the 31st, I pause to think back on the month and how it went…

Honestly, it seems like the blink of an eye. Mothering small children is a wonderful thing but the way the time passes sort of reminds me of when one eats a terrific meal: it is enjoyed thoroughly, maybe even slowly, it’s satisfying and filling, but really it’s done before you know it, and the details are forgotten shortly after, other than recalling it was really good and life is richer for having had it.

Knowing this about now, the speed, vividness, intensity… forces me to pay attention to the details, but with an airy presence of one who knows it is all so fleeting. Savour, settle, keep it together but don’t tie into knots. Don’t hurry something that is already travelling at light speed.

My children are growing quickly.

In Scotland there’s a saying (and they say the same in other places) that if one doesn’t like the weather, then just wait 5 minutes. In Buddhism, they say life is change. We are surrounded by temporary-ness. There is the now but nothing is quite like it, or ever will be. Take it in, then let it go. I try not to get too bent outta shape about any of it… if it’s a tough time, I know this too shall pass. If it’s great, I appreciate the progress. Overall, I enjoy the trip.

Who knows what next month will bring, or next. Who knows what the years will do. There are few constants but love and I sure love being mama to A & E. I love my life… and I hope to keep writing about it.

A in the gazebo

Compare and contrast

The compare game is tough. I thought I was done playing many months ago, but it creeps back in unexpectedly, and now I wonder if it’s even possible to stop. This morning, while in a perfectly good mood, I drove past an elementary school and saw a group of little boys kicking a ball around. I nearly burst into sudden tears! I’m generally pretty good at insulating myself from the thoughts that follow: will A ever run, be motivated to kick a ball, have friendly peers, have this kind of fun, be a little boy at play? I let myself consider he might be the lonely kid in the corner, kicking at dirt, muttering to himself, being made fun of… no. It’s too heart-breaking. It’s also too far into the future. A bridge we’ll cross in time… or will we?

I know E will to some extent be A’s guardian at school. The thought makes me want to have tens more children, build an army behind him, to wrestle to the ground anything that threatens the well-being of their beautiful brother. How silly and primal that sounds, but how footed in the real world. I can fool myself into thinking kids are growing to be more accepting, with each generation of growing acceptance, but really kids are kids and differences are targets and man, A will be different… or will he be?

I can try to piece together a future, but not really. I don’t know what will be, or even close. That’s part of the difficulty in being A’s mom. And it’s part of the wonder and greatness. A could become an athlete, maybe even the cool jock at school. Or he might be the strange kid in the library. Or not. Or everything.

The tears didn’t come because I know I don’t know, and I won’t know until it happens. And that might be later than typical, but I can stave off sadness for as long as it takes, and likely in that time these thoughts will have dissolved anyway, into the nothingness that comparison gives you.

 

Mama needed

Day in the sun and grass, garden, baby not wanting to sleep, A squealing happily, also not sleeping, no writing time tonight, babiessssss todddddlersssss. Clutching my chamomile, I bid ya’ll “till next time”.

Intelligence & intellectual disability

I think a lot about the definition of intelligence. It is such a fuzzy word. Everyone (as in, everyone) has something about them that is… clever, deep, profound. If you have a brain, you’re already complex and interesting. That’s just the way it is, it’s a given.

When I was a camp counsellor for Easter Seals, many years ago, there was a boy in my cabin who was… not of his body. He didn’t move or speak, he was blind, he needed help with everything. At this time I had a lot of compassion but not much practice in presuming competence, so I remember mostly talking over him, to other people. One day at the beach stuck with me tho – we were lying down on a blanket in the grass and I sang to him… and he sang back. It was a high-pitched sort of humming sound, but there was no mistaking it was him, making music. I think in this moment, among many moments at this amazing place, I learned to appreciate that people are never as they might seem. We are all thinking creatures.

All this to say that lately, on forums, other blogs, facebook groups and what not, I run across so many parents who have resigned themselves into thinking their child is intellectually disabled and is therefore limited in terms of things she/he might accomplish. Now, intellectual disability is a real thing – it is a relative term that means in relation to others, so and so learns more slowly. It is mostly correlated to one’s IQ score, but not definitively. They also calculate in things like how one adapts to his/her environment, self-care, communication, social skills, etc.

Acknowledging an intellectual disability in someone may be helpful when it comes to accommodating a certain situation or academic lesson, but it does not mean intelligence is mutually exclusive. And by intelligence I mean clever, profound, imaginative, incredible, inspiring, original thoughts. Thoughts that reflect an understanding in something particular, not necessarily popular or common place, but specific to one’s experience, interests, and ideas.

I want to say to these distraught parents… this only means you’ve been given a gift. It is a gift, a purpose, a reason to go over and above what you know now. Shatter what you think you understand about what makes someone intelligent, look beyond what you see in front of you and imagine the vast depths of possibility residing in your child’s mind. It is there. It is. Presume competence, not by assuming aptness in a specific skill, but by believing in the power of the brain to learn, adapt, rewire, and transcend any limitation you’re tempted to project on to it. In fact, make it immensely easier for yourself and your child by projecting nothing, limiting nothing, and celebrating all that will be.

E vs. potatoes

Trusting time

As much as I enact the “let him be” method of parenting A, there is a parallel anxiety running under the surface that is sometimes hard to ignore. “Do something!” it calls out. Do more than nothing, in this moment and all of the other moments, just do more. It is also a symptom of my mishmash approach to therapies. Typical in my life, I can do a lot of things well but nothing that amazingly, and sometimes I worry that the sheer quantity of stuff in my head regarding helping A just… stalls me. It can feel like piling a mountain of rocks in front of us or oiling the road, depending on the day.

And then there’s yet another thread woven through this fabric, alongside passivity and anxiety, a calming presence that soothes: “Don’t worry, in time.” Ah, time.

Time is what keeps everything from happening at once.

On my spacier days, I believe that the future has already happened and that there are glimpses of it from here (Déjà vus? Naw. But, feelings and serendipities.). To me this doesn’t change anything or direct me in any way, but it does calm me profoundly. I always feel like everything will be okay, even when it’s not, it still is. Things keep happening, always. There is always forward which is eventually better. Time is progress, in this case. Time actually is progress. The brain learns, neurons connect, and wonders occur.

(As an aside, did you know some researchers think déjà vu is a neurological abnormality? And that they’re investigating particular genes associated with it? I’m jealous of the future people of the world just for the inevitable, fascinating breadth of knowledge in neurology that will be available. We know nothing now, but we will! Genes are totally figure-out-able, if you’ve got hundreds of years to spare.)

I truly feel that A will be a-ok, that his fate is amazing, somehow, and that his destiny is shiny and bright. It is a very familiar, comfortable knowing, as if it’s already been confirmed by time.

So in the moments where I feel like I need to do more, whether or not it moves me to action or inaction, I console myself gently with the fact that time will take him places either way. Time will be by his side, leading him along the good path of life, guided by our voices (our cheers!) or whatever he chooses to listen to, and there he’ll go, onward always.

Pharmafail

Seizure medications are, as one would suspect, very strong and powerful drugs. Last night hubs and I were watching videos of one year old A – babbling, interactive, bright-eyed, and happy. Still very delayed, but clear, animated.

Since his epilepsy began almost a year ago, in the summer of 2013, A has been existing on an emotional plateau of seeming indifference, boredom, malaise. His eyes are rarely wide and interested, he is very tired most of the time, he will reach out to things around him but with muted curiosity. He has the occasional short burst of energy, and I try to leverage these moments with learning and play, but often he needs to lie down, relax, enjoy his surroundings, but without much participation. He is well, in a general sense, but he is not himself.

I think to myself, all of the time, “there HAS to be another way!” but really, it’s hard because I don’t know anything about neurobiology, anticonvulsants, metabolic chemistry, etc. and the research I find is often so over my head, let alone transferable to my primitive understanding of A’s particular neurology, biology, genetics.

I wish we could try medical marijuana. Would love if that was the answer – a safe, natural alternative that sounds like it can help those where traditional meds do not. Canada currently restricts importing the particular strain needed, and forbids marijuana being sold in oil form.

Writing about this bums me out. Time to go weed the garden.

Relevant News article: Medical marijuana: Could pot stop this baby’s seizures?
Sign the Petition: Allow the use of cannabis oil for children who need it (CBD, THC-A, THC etc)

A in the cuddle swing

Therapies in tandem

Parenting during the internet age is a WONDERFUL thing, especially with a unique kiddo that requires and inspires a lot of research. There is SO MUCH information available about everything and anything and nothing seems exhaustive, particularly in the realm of therapies for special needs kids.

Therapies, programs, protocols, diets, equipment, tips, bla bla bla bla bla. It is an endless, swirling vat of other people’s experiences, popular-at-the-moment trends, latest research, misconceptions, youtube home movies, banal blogs, wonderful academics, and so on. This onslaught of mishmash has had the transferable effect of influencing my take on therapies: nobody knows anything, really, so try lots of different things.

Thus, A gets a lot of stuff. Some of it clicks, some of it doesn’t, some of it seems good in theory but silly in practice, some of it makes total sense, some of it’s totally ridiculous, etc. All of it… interesting.

PECS, gluten-free, kidwalk, PT, OT, SLP, egg-free, therapeutic horseback riding, ABM, AAC, massage, cranial sacral, omega 3, seizure meds, cuddle swing, RPM, bla bla bla bla bla.

Not to mention stuff like painting his pointer finger nail red as a visual cue for pointing (my own genius idea), or rubbing the base of his head with frankincense salve to awaken the brain (essential oil therapy), or listening to sounds at a particular frequency to give new auditory input (music therapy). Gotta suggestion? We might try it. I have a backlog of stuff still to try, seek out, read more on.

Often sources of these helpful bits seem to think they alone are correct, and using them in tandem with another thing is thought to confuse and lessen their particular affects. For example, ABM practitioners would hope that you do nothing the kid isn’t naturally ready for and therefore assistive devices like walkers are a no no. A loves his walker and I would never take that away from him. In theory, so much good stuff. In practice, so much good stuff, but different.

Overwhelming? Not enough? Hocus pocus bibbity bop?

Fuzzy brain day, so I’ll return to this topic another time.

The question

In my head I have an answer at the ready for the question “so… what’s wrong with him?” It’s a statement that gets revised often. Some days it’s punchy and defensive. Other days it’s nonchalant, casual. Sometimes it’s direct, factual, no-nonsense. Some days it’s simply “nothing.” I used to keep this answer on the tip of my tongue, when out and about with A, thinking the question’s asking was inevitable. What I’ve found though is that it’s not so – either no one notices, no one cares, or no one needs an explanation. Either way, it’s a hat-trick of obliviousness that suits us just fine, and I have relaxed about the whole question thing.

Still, in my head, the answer is under consideration a lot of the time. Maybe it’s for myself more than anyone interested because it feels like a kind of mothering manifesto. What I’d choose to say is so loaded with A’s history, my journey as a mother, and my beliefs on inclusion, communication, understanding, and love. I want to acknowledge the struggle but convey a sense of gratitude for all of it. It’s hard, but it’s good. I want to explain his uniqueness but without too much variation. He is different but the same. I want to be real about his neurological issues but celebrate neurodiversity. He’s awesome not “despite” a disability but as a result of an extraordinary special set of abilities.

See how it can get complicated? Plus there’s the whole undiagnosed, syndrome without a name thing. By nature, there is no easy answer.

If someone asked me today I would say something like, “he has trouble controlling the movements of his body.” To me this relates several things, easily: it presumes A’s competence, it tells it like it is, and it is neutral in drama. The actions in his life require more effort than most, for both of us, yet here we are, and we’re having a pretty great time.

Explaining to children seems like a different ballgame, though. At daycare I’ve heard some kids call A “the baby” and I understand why. He arrives in a stroller, crawls, squeals, needs help with lots of things, etc. But I think the same answer works here too – and I think, as I do, that A can teach his peers a lot of interesting things, just in being his rad self and doin’ his thang.

A is a delegate for the inclusive future. Until we figure out the communication thing and he can introduce himself, I hope in all his diverse encounters with new people, the adults or friends around him present him in a respectful, positive way. I know this won’t always be the case – as I’ve said, answers are difficult – but I think if the seed is planted, starting with us, it will thrive and grow outward into his community, and become part of the local consciousness…

I just have to wait for someone to ask.

Adorable A at one year old.

Mama’s physical

I just had my yearly physical. Nothing of note really – my health is that of a basic 30-something: back pain, lack of sleep, probably low in iron, but everything is generally okay.

So easy to ignore yourself when you’ve got kids though. It’s become habit to check my teeth and hair in the visor mirror of my car before entering public, often sighing at having skipped a morning shower… again. And darn that spit-up on my shoulder. And what is that goop on my jeans? Headbands, glasses, and baggy sweaters feel like a disguise as I enter the world of kept and rested folk.

One slightly noticeable thing is that I’ve lost some weight since giving birth to A. Nothing too freaky, but the last time I weighed this little I was like 15. It’s the only real proof left of my rough first year with A, when I was riddled with so much worry and exhaustion and stress. I suppose at that time eating well seemed so… unimportant, even superfluous, when compared to everything else that was happening at the time. His health trumped my own, of course, the sacrifices of motherhood are nothing new. And also, one just forgets about things when in survival mode, when focused solely on getting a child to grow and flourish and hit milestones. It’s one thing to the next, to the next, to the next, without exception, without pause.

I feel so much better now! Emotionally gentle and sound. But it’s time to do more to improve my own health, to physically heal from that time of distraction and confusion. As we settle into a more comfortable life, where A has many supports in place, and we’ve come around to celebrating the gift that he is vs. fretting about what may come, there is room for myself again.

Still grappling with greediness vs. self-care, but there’s a happy medium I’m sure. Especially because A is now 30lb and still dependent on us carrying and lifting him – I need to be strong, a bit more substantial, and well. Frequent showers and rest… well that’s another story.

Delirious selfie – the emergence of A’s epilepsy, 6mo pregnant with E, several nights without sleep, staying a night solo at charity hotel for family across from Children’s hospital to rest while hubs takes the night shift with A.

Time out

So after yesterday’s soapbox post about inclusion, the practice of writing, the importance of showing up, etc. I’m taking a pass on tonight. A movie with hubs and earlier I was looking at google images of horses with A. He starts riding lessons on the 5th but we’re going to visit the farm on Sunday morning to meet the horses. I think this will be his first time seeing a real horse up close – should be somethin’!