Just some random, irrelevant, humorous, and hopefully inspiring musings on life, love, faith, widowhood, remarriage, adoption, blended families, caring for a handicapped child, mothering seven children, chickens, cooking, grief, over-coming grief, and everything else in between. Just Keep Livin!!
What’s politically correct you might wonder?
As do I and –
What is normal anyway?
Honestly, I’m not sure because I’m tired.
And I don’t spend my free time on political jargon
And I definitely don’t sleep well
And most of my waking hours I’m caring for someone else
Or finding resources that will hopefully make our life a little bit easier someday.
Someday – a day that feels more and more like a unicorn lately.
You see, I’m a special needs mama to a 15 year old son.
And no, it’s not politically correct to call myself that
Because I am more than just special needs
Or so they say
But am I?
Because a pretty high percentage of my life revolves around my child and what we can or can’t do because of his limitations.
I often see you and your beautiful typical functioning children out and about in the world, and I’m envious.
Yes, I said that out loud.
And I’m not supposed to say those words because I have my miracle baby.
The child the experts said would never live
So there’s always guilt attached
To my envy. Continue reading “See Me Too – A Caregiver’s Plea”
The past couple of months there has been a lack of peace in my home, and I often thought, this mothering gig really isn’t my thing anymore. 4 teenagers, one with profound special needs, a pre teen, a 10 year old, a 9 year old, and a four year old who has no lack of confidence. It was a lot. Between health and job and hormonal issues which led to emotional issues and arguing and backtalk and snarkiness and bad attitudes and the older kids teaching the younger kids things they had no business knowing; the whole thing was a big honkin cup that overfloweth… or perhaps, it was more like a kitchen sink or the bathtub spilling over & it was causing significant damage. And we – the parents – should have immediately steered the ship back on course, but instead we bickered & bitched & complained as we held on for dear life to the raft boat the kids threw us when they made us walk the plank.
This sudden change in the family dynamic was attributed to a few circumstances: one, everyone was getting older and hormonal and becoming more opinionated & two, our move to an urban community where the kids had opportunities for activities, sleepovers, and jobs and the focus slowly shifted from the family unit – a strong unit we had in rural America where we relied heavily on each other because it was all we had – to individualized focus “You take care of you, and I’ll take care of me” & as long as the older crew took ownership of themselves: jobs, food, school, homework, play – we didn’t question much. We reasoned it was simply a stressful time in our life and “this too shall pass” and then…
Then, a few weeks ago, I said to my husband “I really miss family dinners.” You see, with the introduction of jobs and late nights and neighborhood kids to play with and everyone fending for themselves, and in turn each individual grabbing a bite to eat here and there, dinner time as a family had become almost obsolete – the rare exception in our family since our conception in 2011. For 8 years, we have religiously sat down at the dinner table and enjoyed a meal together – religiously until the move this past December. When Ryan and I married, we knew this tradition would provide a foundation to our success as a blended family – the art of gathering around a table for a home cooked meal and offering a blessing for not only the food we were about to eat but also for his faithfulness through our lives. We knew that the table would provide the foundation for community and connectedness in our newly blended home and the absence of the table would only leave a void and disconnect.
We recently reincorporated family dinner night. It looks a little different than it did in rural America, and we eat later – around 6 now because of play time with the neighborhood kids. We’ve made it a requirement for any child who is home that evening, and my oh my, what a difference we’ve seen already. Attitudes have changed and lightened as we laugh around the table partaking in fresh pasta and warm bread. I like my kids again & I think they might like me too as the focus has shifted, and we get to know each other on a heart level – on a real level- rather than just co-existing.
There is so much chatter in the world today about how lonely we all are, how depressed and isolated and longing for community, and this is not only true for ourselves as adults, but it’s desperately true for our kids. Our homes need to be safe places of respect & connections and what better way to foster these desperately needed essentials than around a table? What better way to encourage conversations? And what better way to show love than to invest our time, our most precious commodity, in them? Give it a try. You won’t regret it ️
I often struggle to understand or explain Luke’s thought process to others. Luke, my 15 year old primarily non-verbal son with profound special needs. Friends, bystanders or even specialists will inquire about where he is developmentally and that answer is difficult to identify. Luke’s brain doesn’t seem to process like typical brains – whatever a typical brain is – but there is a baseline that we all adhere to and he doesn’t land linearly on it – or near it at all. He tends to land here and there and everywhere. He understands more than he can comprehend & yet there is a process that is uniquely his. I believe at times it’s clear to Luke what he desires, but at other times it’s not, and so he’s not able to articulate exactly what he wants. For instance, when he says Mother Goose this does not mean he wants Mother Goose. It means I don’t like what I’m watching so please change it until I stop screaming which will then be your indication that I’ve made a decision. All he knows is that there is something in his sphere of existence that is causing frustration, and he reacts by screaming until that frustration is addressed.
We attempt to remedy his angst by offering different music, shows, activities, or remove him from the current surrounding, and it may help or it may not. Many times we’ve gotten him ready to go “Whee!” at the park, per his request, and we arrive and can’t get him out of the car. He absolutely refuses to leave the vehicle and engage at the park. So then we bring him back home and start the process all over again. One thing that does work about 100% of the time is feeding him cookies or cake or sweets of any kind (it’s pretty effective with all of our kids), & although this satisfies him for the moment, it’s not good for him to gorge on cookies all day and that’s when our higher reasoning skills as his caregivers must step in and say no. Luke often wants a lot of things that aren’t good for him – as any child would – playing on his iPad all day, not eating fruits and veggies, trying to walk into the road and so when individuals ask What does hewant? it’s a relevant question but sometimes it’s not because Luke doesn’t necessarily know what he needs or wants or may want something that wouldn’t be good for him.
The other day around 7 p.m. Luke’s screaming was relentless. He had eaten a big dinner, taken a long soothing bath, had his juice, was jammied with his iPad in hand, and he just continued to scream. Nothing would make him happy. As you can see from the photo, he often hangs out in this sensory area we created, and his bedroom is inside the smaller door. In the background you’ll notice the safety bed which keeps him secure at night and provides a sense of calm, and you’ll also notice, his bedroom door and bed are wide open for him to access at any point.
This particular night we were finally fed up with trying to determine what was causing his frustration, and in a last ditch effort we gave him his chocolate milk with melatonin, (a ritual since 3 years old), turned on Pandora (which he falls asleep to) and put him to bed – an hour earlier than usual. He didn’t make a peep. All he wanted was to go to bed – with the ritualistic aspect involved – Dad putting him in bed, handing him his milk, turning on his fan, and tucking him in with his blankie – but he, in his limited knowledge and vocabulary, could not instigate this process for himself. He couldn’t and wouldn’t voluntarily lay in bed because that’s not how the process goes in his mind. Dad (or Mom) had to do it.
That’s Luke’s brain to the best of my limited comprehension – his wonderful, miraculous, and unique way of looking at the world. It’s joyful and frustrating and messy and damn near impossible at times, but it’s his reality and ours, and we honor it; accept it; and live with it.
A few weeks ago, on a particularly warm summer day, Ryan and I announced to our crew –
Kids! You’ve been so helpful lately and did your chores without complaining so we’re going to have a family fun day at a water park!
Kids responded with glee and excitement and Yays! all around and asked –
Who’s going to watch Luke?
We’re going to bring him, we replied.
He’ll enjoy getting out of the house.
Mom!!!!! NO!!!! bellowed the sounds of despair. We’ll have to leave early if Luke comes!
This is a constant dilemma we face.
We brought him.
He did make it very difficult and tiring.
We did have to leave early because Ryan and I were absolutely beat after a few hours of fun.
We arrived around 11:00 a.m. because this particular event had free food (major bonus with our crew!). We loaded all eight plates full of grub, and then Ryan retreated to the furthest corner of the park, in the shade, to feed Luke so that the stimulation of all of the people didn’t overwhelm either of them and so he wouldn’t try to grab the food off others plates (Luke not Ryan). I picked a table near the food because I knew my tribe was going to take full advantage of the free factor.
Mya took charge of Annabelle as she skitted about, and the rest were free to roam independently. Ryan and I took 20 minute intervals engaging with Luke. A word here – Luke is no longer content to sit. EVER. He has declared a mutiny on his stroller and wants nothing to do with it, but he needs constant supervision and assistance for his and others safety. We took turns introducing him to the parks plethora of activities – 5 slides, numerous water features, an accessible swing, acres of land to explore, lots and lots of hot dogs because he wouldn’t eat the chips or watermelon or popsicles.
About 3 hours later Ryan and I looked at each other and we knew – we were done. Physically, mentally and emotionally, and we also knew our kids wouldn’t be happy about it.
Let’s give them the 30 minute warning
My wise husband suggested.
The moans of disappointed began –
Luke always makes us leave early! Why can’t we find a babysitter for him? Why can’t you and dad drive separately? (Which maybe we should have but the park was about 45 minutes from our house)
WHY DO WE HAVE TO BRING LUKE? They wailed
And we responded, frustrated as well and exhausted, questioning the excuse we offered-
Because he’s part of our family, and we need to include him occasionally.
We currently do not have a solution for this problem.
It is what it is.
We do feel the need to include Luke – even at the expense of his siblings happiness, but we understand their frustration as well.
This post is simply to bring awareness; the little things that special needs families struggle with such as decisions that sometimes cause pain for other family members. I do believe that our children will be better human beings in the long run for having Luke in their life as they have patience, flexibility, and independence that other kids may lack. They have also learned compassion and acceptance towards those who might not be just like them – those who might cause a bit of a disruption to their happiness – those like Luke.