We are riding in the car. Maybe it’s the confines of having to sit buckled in and still that leads to these car ride conversations. We have had a lot of these car ride conversations lately. He asks “Does having autism make things hard for Elliott Mom?”…..breathe….deep breath….. “it does make things harder for him sometimes buddy…” - deliberate pause to try and brace my heart for the next question – Each query is like a pin prick and my heart is the pin cushion. ”Do I have autism Mom?”. I feel the guilt and shame tugging at me for wanting to shout “NO! You are PERFECT!” instead I say “you do have a little bit of autism buddy but it doesn’t make you any less perfect than you already are. It’s just part of you – just like it’s part of your brother.” I brace for another pin prick and try to remember to breath. ”Wow so me and my brother have a lot in common.” ”yup you sure do buddy – it’s great to have a brother like yours to grow up with.”….. My youngest child has just taken his first step onto the road of self advocacy. There is so much to teach him and so much to learn.
I have not been writing about autism or even posting on this blog lately. I’ve just been living this life and working hard to parent these kids – trying to make changes to make life better – not necessarily easier – just better. I’m also trying to focus on the happy moments and taking notice of progress. To spend too much time thinking about how hard it is sometimes just seems to make it harder. So I’m trying to stay focused on finding the joy which is a delightful balm to my pin cushion of a heart.
Like when the little guy tries to tell me how boys are better than girls….to which I reply “girls can do anything boys can do!”. And without even a moments hesitation he tells me “well I know something girls CAN’T do – they can’t pee standing up like me cuz I have a penis! What’s that thing you have?…a bahgina?…. ya I feel bad for you Mom. Too bad you don’t have a penis.” Yes these are the moments that pull the laughter from deep down and keep me smiling on the inside when days get tough.
Never an early riser in her younger years she wondered about all the mornings she slept through. Were they as calm and peaceful as this? Taking her morning coffee out to the back deck she enjoyed the symphony of the birds. The deck overlooks a deep forest allowing nature a perfect stage for daily performances. The flower boxes and hanging pots sometimes entice nature’s performers out of the forest and up onto the deck. Large bumble bees are buzzing from one flower to the next. Humming birds zoom and flit between the blooms as well. The rattle of the heat bugs provides the percussion for the show. Each bird has a call or song giving a sweet melody. The birds provide a visual delight to the performance as well.
The noisy jays are tempered by their deep blue feathers. The red headed wood pecker pounds a beat while the sun glistens against his vivid hood of feathers. The sound of a cessna droning by interrupts natures show for a few moments. As an oriole swiftly swoops by showing off his incredible orange and black pulmage, she wonders what the day will bring. As the cool morning breeze gently blows the hair from her eyes she sips the last taste from her coffee. She takes a deep breath and knows that whatever stress the day brings she will venture back to this moment in her mind. She will remind herself of this daily performance and know that she will be able to take a front row seat the very next day and for now that will be enough.
To describe childbirth is so difficult. Not the actual physical part of childbirth but the way giving birth changes the innermost part of you. No one had ever explained that to me before. Maybe I just wasn’t asking the right questions…. I thought about the sleepless nights, the diapers, the cribs and car seats…all the mechanics of it…..potty training and play dates. I knew I could do all that and I was ready. Knowing at times it would be really hard but that I would be able to handle it. I was so foolishly naive thinking that it would be easy to be a parent – I was never so wrong about anything in my entire life.
For me it feels as though my heart transformed from a strong beating muscle into a delicate piece of glass. So fragile that it can shatter so easily. Every triumph you witness for your child shines through it like sparkling crystal – so beautiful. Every heartbreak or setback witnessed leaves you carefully picking up the shattered pieces – your fingers bloodied at trying to retrieve all the shards.
Nothing restores my soul more fully than to watch my precious one as he sleeps. His long thick lashes gently resting upon his face as he exhales the breath of deep sleep. His cheeks still have the full roundness left over from his chubby babiness. I long to nestle my own cheek there. His fingers and wrists still have the pudginess of young childhood about them. I know that when I look at his school photo next year these childhood features will have left him – pushing him up the growth chart into boyhood. He reminds me daily just how big he is growing. I sneak into his bedroom every night to catch as many glimpses of the remnants of his little boy features as I can. I gently smooth his too long hair away from his eyes. I slide my fingertips around his round cheek and down to his shoulder. I spread my hand on his back and notice that it fits perfectly in the center as I lightly rub trying not to disturb but hoping to hang on to this feeling another day. I sit quietly and pray to God asking him to watch over this boy whom I love with all my being and I give thanks – thanks for the blessing of being a mother.
It has taken almost 6 years for me to see the results that hold the most meaning. Oh, the “experts” have all kinds of assessments and diagnostic testing to evaluate and measure. But, today I was able to kiss the top of his head and hug without resistance. I inhaled deeply his little boy scent not sure of when I would be allowed this close again. A mother allowed to express her love – this is the progress that matters most to me. I tell him daily how much I love him – his usual response is “I know….(loud sigh) you keep telling me that.” I smile knowingly and say “it’s important to me that you don’t forget.”
Growing up for me did not include words of love or hugs and kisses. Neither of my parents were raised in that type of environment and it has taken me years to accept the sadness of that for both my parents and for me. When I think about it today I see it differently. More of a divine plan to prepare me for my own journey in parenthood.
So while my arms are empty now that he has scampered away – my heart is full. Full of the progress in the lessons of love.
I often wonder how my journey down the special needs parent road led me to where I am. I look back, I try to look ahead, and I scrutinize the here and now. I sort of break down my knowledge into grade levels. The pre-K years, elementary, middle and now high school. In those early years (pre-K through elementary) I did not even realize that I was considered a special needs parent. As my son was being educated in school I was also being educated – I just didn’t know it at the time.
Well yes, my child had an IEP and received services at school – occupational therapy, physical therapy, and speech. In the classroom he was “full inclusion” – he had his quirks and things that were especially hard for him - but so do all kids in my opinion. I still did not see him as anything but the beautiful boy that he was. I knew he needed extra support in class and that the school environment was too noisy for his sensitive ears. We struggled with that. He worked hard in school and he was meeting expectations throughout his elementary years. He was 8 years old before we actually received a diagnosis of high functioning autism or perhaps Aspergers Syndrome. The specialists that we took him to were in a conundrum about our boy – when we went in for the diagnosis they told me “we have been talking about your son all day he is just so unique”.
The nurturing and inclusive environment of elementary school did not prepare me for how incredibly difficult the transition to middle school would be. In fact, “incredibly difficult” is much too weak of an adjective to describe this transition experience for us. Crippling, excruciating and painful are more accurate. The increase in both academic and social demands was beyond my son’s ability to cope. Not to mention the lack of inclusion atmosphere and the bullying behavior adopted by his peers. It took every ounce of his being just to walk into the school building. I would have to unbuckle him and gently push him out the door of the car. He would say every day “I’m not going in there!” and I would say “You need to try”. And he did try. He tried his best every single day – but the cost of that trying was just too much. By the end of 6th grade he was in daily agony – stomach pain and vomiting every morning before school. I often cried as I drove away – unable to hold in the pain of seeing my child in such distress. I would call the school to check in and see how he was coping – knowing that if he was still upset I would get right back in the car and bring him home. The daily drop off feeling was akin to putting him in front of a firing squad. He was getting support at school but it just wasn’t working. My wake-up call came from the pediatrician who told me he would develop an ulcer if there wasn’t some sort of change. My wake-up called continued when at an IEP meeting I requested – to discuss his stress and anxiety while at school and the concerns of our pediatrician – was met with ”do you think he is playing you? – faking it at home? because he seems fine at school.”
That was the moment. I realized I have a child with special needs – and his needs are not being met. There was a lack of understanding by the staff in what he needed at school and our message was not getting through. Our boy had a level of stress and anxiety that was physically making him sick, but because he is kind, respectful and works hard all day to hold himself together they can’t see it. They didn’t have a category for him because they didn’t have any experience with a student like him and therefore they were at a loss for how to best support him. Maybe you have heard the expression – if you keep trying to pound a square peg into a round hole you end up with a broken peg….. We left that meeting and I drafted a letter informing the school that I would home school our son for his 7th grade year. Our son would have the opportunity to heal his body, rest his mind from anxiety and learn and grow in his most favorite environment – home.
A challenge to be sure for me to educate him in academics due to his learning issues entwined with his autism – not to mention his “quirky” 3 year old (and incredibly loud) brother running around our home. We worked it out though and I venture to say he grew both academically and socially. We joined a local home school group and went to book clubs, a bowling league, park days and he still participated in physical education twice a week at the middle school – his favorite class since starting school. We even volunteered at the middle school book fair. I wanted him to know that this was not a public school vs. home school issue for us. The only issue he needed to know about was that we would always do what is best for him – no matter what – and he was helping us to steer that boat.
I’ll cover the rest of middle school and our introduction to high school in a post soon.