Walking between the raindrops
Riding the aftershock beside you
Off into the sunset
Living like there's nothing left to lose
Have you ever looked at your child and wondered what the hell you were doing wrong?
Get away from me, you're standing too close!
Turn the radio off, it's too loud!
My shoes aren't tight enough! My shoes are too loose!
My underwear doesn't line up with my shorts!
My socks are all bumpy!
But, I like eating mac 'n cheese with my hands!!!
I don't like brushing my teeth!
I used to think that either I had lost the plot as a parent, or I was raising Cain!
source
And then, for good measure, I would run through my sanity checklist:
You know your parenting skills are good, heck you had to volunteer at a school, babysit your mate's kids, attend parenting classes, and go through 2 grueling and heartbreaking roller coaster years of raised hopes, and disappointments, to be blessed with your two beautiful children. The life of an adoptive mom, of a child with special needs, did not come easy.
Then I would gather my thoughts, scold myself for entertaining the rising dread and glide in with a cheerful breezy hello. He would run to meet me, give me the biggest hug and we'd walk out to the car, my body seduced into a false sense of calm. Once inside and the doors were shut, all hell would break loose. He would just crumble...and when I say crumble I mean explode! It was as though he had been holding every little hurt and frustration in for the whole day, and when he saw me, that was it! I was going to bear the fury of hell. At first, I was really upset and struggled to cope emotionally with the constant onslaught of emotional breakdown from my son. The preschool had assured me he was progressing fine, no reason for concern, just a late bloomer, but they were not seeing the devastation that I saw every single day. Some days I honestly couldn't cope and I behaved rather obtusely, to my shame and regret, but I was a mom falling apart too. I would turn the radio on to drown out his screaming for just a minute before the short journey to my eldest's school. On those days I was already beaten, trying to juggle the demands of the day job in the office and constant calls from the school to fetch him early due to meltdowns, not to mention the late nights spent trying to get him to sleep because he was sleeping at all hours during the day. It was either block it out or feel compelled to leave the car screaming myself. He would compete with a set of vocal cords from hell ...and win the argument, the radio would go off, as I'd be left wagering the bargaining chips. Then we'd both sit in silence for the 5-minute drive to my eldest's school; both defeated in our own way. In those 5 minutes, he would exhaust himself emotionally and fall asleep almost every single day.
But once his emotional energy was balanced and we had enjoyed our cuddles, he gave the appearance of a 'mainstream' child (for want of better words). Fortunately, I learned quickly, and knowing that there was something more to uncover, found ways to distract and console my wounded child.
When his last term at preschool started, separation anxiety at the school drop-off became the norm, as did struggles with transition and social interaction with all but a couple of his peers. The teachers could not pinpoint his triggers to meltdown. One day I was met in the reception area at pick-up and was asked to wait in the parent room for him. I walked in and there were toys and books everywhere, upturned chairs and tables, papers strewn in all directions. I remarked casually
oops somebody had a bad day...what happened here?
The reply
...Your son!
Things went from bad to worse in Junior Primary (age 4). His separation anxiety was such that he would go kicking and screaming into class each day, sobbing his heart out. He had frequent meltdowns, was exhausted by lunchtime, and would run away and hide up trees and under chairs; wherever he could find a safe haven. He never initiated aggression to others though. He was always the wounded animal, fearful and defensive when overwhelmed and challenged. And when this happened the storms would rage, cloakrooms would be turned upside down, and shelves would be emptied of their contents in one foul sweep of the hands. The teachers even took to restraining him by force. He once told me that the reason he runs sometimes is that he can feel 'the bad' in his tummy growing and he just wants to escape from it, and so he runs! He hated being restrained and would fight back as he said restraint hurt his body. He asked if they could just leave him be when he was feeling like that and he promised he would go away quietly, dry his own tears and come back when he was ready. His suffering broke my heart over and over again.
He was forever bouncing everywhere (and still does!). His concentration was lacking and he preferred to stand on the periphery of group activity rather than join in. Any excessive demands would be met with a complete shutdown and so reading, writing and arithmetic all fell by the wayside and severely suffered. He was even subjected to a few school exclusions. He used to say things like
I'll never be able to do anything. I'm rubbish. I'm the worst in the class at everything!
We even had a period a couple of years ago when he would self-harm; scratching, biting, punching himself in the face, and threatening to run into the road and kill himself because he felt so worthless, because life was just too hard. It was heartbreaking.
In conjunction with his school, a number of strategies were attempted including providing a safe space for him to turn to when he felt like he wasn't coping, providing some 1-2-1 teaching assistance, wearing ear defenders, special pencil grips, working in shorter bursts of time, and providing transition periods between activities. For a long time, we just removed all demands at home and this meant no homework too. This made for a happier home life all around.
We went down the long and winding referral route to get him seen by a multitude of therapists from various medical fields over the course of approximately 3 years.
He is now in year 4 in senior primary school and we experienced two incredible moments in the latter part of 2021 that ended our year on a high and have set the tone for our kids' future.
- Going Gluten-Free. One day in discord I had a long discussion with a friend that I met here on Hive (I leave her to identify herself if she wants to), who told me about the benefits that her family had experienced in going gluten-free. I told her about my eldest son's constant migraines which had started when he was around 7 years old and still persisted at the age of 10. I spoke about my youngest's struggles with focus, attention, reading, writing, and being able to access the learning curriculum and take part in peer discussions. About our belief that he was on the autism spectrum and struggling with a number of traits. From her experience, she thought we had a shot at gaining some inroads into managing some of these issues better if we eradicated gluten from our diet. Now, this was not a medical opinion! It was simply one mom sharing knowledge and experience with another mom... so please guys, DO YOUR OWN RESEARCH and make sure what you are doing is right for your family. I did! I read /watched the information that was shared and decided we had nothing to lose! So we commenced a 4-month gluten-free trial in an effort to quell the migraines in O and see if we could find any improvement for J.
Within a week O's migraines had subsided completely. He went from 3-4 migraines a week (whilst on meds!) down to around 1 a month. He is now no longer on meds and only suffers the odd small headache maybe once a week and a migraine maybe once a month. This was such a huge win for us as a family as he was spending hours 'man-down' in his bedroom 3-4 times a week prior to this, curled up in a ball in a darkened room, in utter pain, sobbing his eyes out. He had been on meds for about 9 months. The first medication X made him put on weight, become physically clumsy, and develop awful moods, but it stemmed the migraines to a large extent. When we switched to medication Y the side effects disappeared but the migraines returned. The doctor's solution was to double the dose of the meds. I am filled with gratitude that I met this friend and that we had faith and tried a different path first instead. My eldest son has his life back now and all because we eliminated Gluten from his diet.
And my youngest? Within 2 weeks, I was called aside after school by J's teacher. She wanted to tell me that she had no idea what had changed but that J was amazing her. He was putting his hand up in class, answering Maths questions correctly, completing English comprehensions (all 10 questions), reading voluntarily. He had become enthusiastic about going to school which he never was prior to this. When I asked J if he could tell me why he was suddenly able to contribute in class, he described it like so:
Mommy, it's like, you know if your ears have wax in them and they feel full and you can't hear properly? Well, that's how my head used to feel... too full, jam-packed and I couldn't work out what to do with everything...now it feels ...empty... but in a good way.
I couldn't stop smiling that day and I still can't!
- Receiving CAMHS diagnosis: We received J's official diagnosis from CAMHS: Austism Spectrum Disorder with Attention Deficit Hyperactivity Disorder, Demand Avoidance, and Sensory Processing Difficulties. The day I opened that big brown envelope from CAMHS and read the opening lines of the report, I cried and cried. But they were the biggest fattest happiest tears of my life. I felt vindicated for him, and for us. He wasn't a naughty, manipulative, obstreperous assh&le of a kid as some teachers would have had us believe. He was a child with struggles beyond the capability of his years to manage.
This official diagnosis has come just in time for his annual Education Health Care Plan review with the school and Local Authority and will provide great substance and backing to his needs going forward. It may even open the door to a specialised autism unit attached to the High School that O will be attending next school year.
It has been an exhausting and tumultuous ride so far and we have taken the not so scenic route through educational psychologists, play therapists, opticians, audiologists, GPs, occupational therapists, and mental health care practitioners to get to where we are now.
Today we have so much love and understanding between us that we have built on over the years as we slowly un-picked all the little pieces that make up our beautiful child. He is truly a child of the spectrum, painting our world with every colour imaginable under the sun.
He still struggles, he bounces off the walls in joy, and somedays in frustration, he gets bored easily and struggles to self-entertain, has endless clothing issues, and finds reading a challenge. And we still have meltdowns but he is learning to recover from them quicker. But he now loves going into school, he has friends that he plays with at breaktimes, he engages with his teachers, and has an immense amount of personal insight for his age.
He loves to write, just like his mommy, and he is blossoming into a little artist, with his own personally designed and handcrafted portfolio, and a chef, and I couldn't be prouder of him. As his life journey continues in the world, I wish for him, only love.
Perhaps love is like a resting place, a shelter from the storm.
It exists to give you comfort, it is there to keep you warm.
And in those times of trouble when you are most alone,
the memory of love will bring you home.
Perhaps love is like a window, perhaps an open door.
It invites you to come closer, it wants to show you more.
And even if you lose yourself and don’t know what to do,
the memory of love will see you through.
Oh, love to some is like a cloud, to some as strong as steel.
For some a way of living, for some a way to feel.
And some say love is holding on and some say letting go.
And some say love is everything and some say they don’t know.
Perhaps love is like the ocean, full of conflict, full of change.
Like a fire when it’s cold outside or thunder when it rains.
If I should live forever and all my dreams come true, my memories of love will be of you.
John Denver - Perhaps Love
References:
Can I vote 1000%? Why don't they allow this on Hive. hahahahahaha
I feel like I'm taking the journey all over again with you and even going back into our own world of 21 years. hehehe I'm so thrilled for all that has blossomed here for O and J. It's funny how both of their issues resonated with me and my family - O with the migraines (and I had the same frequency as he did, and now it's at the same as his without gluten! and of course my boy and J's similarities)
You know, I really can't wait for you to meet my boy :) heheheh I would love for you to just sit down and talk with him - and KNOW that our journey began like yours and J. Not every detail - but many similarities. Where J would blow up - mine would retreat into a secret world where he was untouchable.
What a beautiful life it has been to gain entrance into his world, watch him learn to trust me, take my hand, and lead him safely into this world. And now? hehehe he doesn't need my hand anymore (though he often still grabs it out of affection) LOL
I have more to share with you, but in time. hehehe and soon. Maybe March. ❤️ Maybe a few more tools for your toolbelt. I love you Sam, and I'm so happy that it's a new era for your family. I know the relief and joy and peace that comes with all of that! and the hope! Oh my gosh, the hope!!!
So happy for our souls meeting... hehehe
Aaah there she is 💖
This 👆 is where it is at❣️. This is the most important thing in my view... I said something similar to @mineopoly the other day (but you have put it beautifully) that it is about providing (him)
and the trust that flows and the love that flows from there is just beautiful. I am so happy for you that you have the amazing relationship that you do with your son and that he is finding his own way in life. You're a really good mom, Leah. And I am looking forward to meeting him too...
I'll tell you something, I have so much gratitude right now. I feel a peace within that I haven't had in a long time and I have a renewed sense of faith that I think I lost somewhere along the way in life. But you know this past year... I feel the pieces of my own life coming full circle. I am in such a good place. Joyful, hopeful, happy, inspired - feeling truly blessed 💞
Thank you for just being you...love you too 💗
!PIZZA !ALIVE !LUV !LOLZ
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He needs me to get him out of jail.
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@dreemsteem, I sent you an $LOLZ on behalf of @samsmith1971
Use the !LOL or !LOLZ command to share a joke and an $LOLZ. (2/2)
My joke suggestion! Haha
!LOLZ yep ... thanks for the contribution. It is one of my favorites.
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@vaipraonde, I sent you an $LOLZ on behalf of @lolztoken
Use the !LOL or !LOLZ command to share a joke and an $LOLZ. (1/10)
@dreemsteem! You Are Alive so I just staked 0.1 $ALIVE to your account on behalf of @samsmith1971. (3/10)
The tip has been paid for by the We Are Alive Tribe through the earnings on @alive.chat, feel free to swing by our daily chat any time you want.
@samsmith1971 you are brave! I nearly broke into tears reading the journey of you and your Son. I perfectly understand how uneasy it has been with you guys managing the migraine, but the good thing is that you were privileged enough to meet a friend here that suggested the gluten free diet and it's working like a magic for J boy.
I am happy your son is doing well now and I wish him a total recovery.
You are doing a great job ma'am, weldon 💪.
Thank you for your kind words @nkemakonam89. Yes, O had the migraines and they are pretty much gone (he is averaging about 1 a month now so his experience has been exactly the same as Dreems) J is autistic but he is really coming out of himself now, engaging more, excited about learning. I swear by being gluten-free. I have gone gluten-free alongside my boys too and it has not been a difficult adjustment.
People think Autism is Rainman. Autism breaks families, relationships and sometimes even life. The minute you share that a child is totally impossible to handle, you look incompetent and cruel. It drains the spirit and numbs the mind - almost impossible to get through the day. Without experience of the chaos inherent in this situation, empathy fails - this is the crux, it often feels like you’re living in a ball of cotton wool, muffled by trauma, punch drunk 😵 from ordinary daily routine, unable to communicate your own needs, which usually revolve around attempts to assist and understand; and you’re ALONE. Wow, it’s hard! But, if you have discovered something that helps, that’s a miracle. Thanks for the tip
PS: sorry Sam
Wow... that can only be the voice of experience speaking there 🤗 You get it and you described it so perfectly. Life is still not easy by any means but it has got a damn sight better this past year, and I have real hope for my boy 💞 Going gluten-free seems to have given him a sense of clarity that he was lacking before and this is enabling him to navigate his day to day much easier and he can now see and understand better what is being asked of him at school. Hit me up in DM if you ever want to chat more on this ...do you not ever sleep either? 😉!ALIVE !PIZZA!
No, I don’t sleep. Much love, much ❤️❤️💕
hehe much love to you 💗🤗
@itsostylish! You Are Alive so I just staked 0.1 $ALIVE to your account on behalf of @samsmith1971. (2/10)
The tip has been paid for by the We Are Alive Tribe through the earnings on @alive.chat, feel free to swing by our daily chat any time you want.
oh my gosh!!! i have said this so many times in my life!!!
"people think autism is rainman"
YES.
yes.
THEY HAVE NO OTHER UNDERSTANDING OF IT OUTSIDE OF THAT MOVIE.
and I don't mind the movie - because that was a representation of someone ON the spectrum! Just like the movie about Temple Grandin! Amazing people and that was THEIR story. But people just tried to lump it all together and label them with one broad stroke, and THAT is a huge disservice to the rest of the people on the spectrum!
There are many many different shades of it - and each presents so differently - especially across the gender divide. So many nuances - there is a REASON its called a spectrum disorder! LOLOL
Your comment is beautiful.
Sending a massive hug to you
❤️
It feels exactly like this, doesn't it? 😥 And none of us sleep...we try desperately to cling to what time is available in the still and quiet hours of the night to call our own; to have something left for ourselves. Big loves, and I hope Leah's tip helps 💗
I had goosebumps at some points reading this. It's a story of struggle. The struggle that both the child and the mom has to go through. The irritating attitude of a normal child exhausts us, while you have been living and tackling with a child with special needs and attentions. These kids are soooo blessed. They are creative and imaginative yet too sensitive. They need more than 100% of their parents especially mother.
A hats off to you @samsmith1971 for everything you do for your family. You are an inspiration and motivation for many moms. I am sure God will make your life's journey more blissful
Yeah, what complex story. You deserved so well that i was having lot of feelings here. Diet is so important. Processed food, gluten, sugar. Congratulations to manage all that. Tks for sharing
Thank you Amber, it is definitely the life of a mom. I feel so blessed to have my children and we are coming out the other end of this with so much more laughter and giggles and joy and understanding...and he gives just the best hugs in the world 💗
I can assume the warmth of those hugs, the sincerest ones.
!PIZZA !ALIVE
@amberkashif! You Are Alive so I just staked 0.1 $ALIVE to your account on behalf of @samsmith1971. (5/10)
The tip has been paid for by the We Are Alive Tribe through the earnings on @alive.chat, feel free to swing by our daily chat any time you want.
@wil.metcalfe I see you doing your thang there in the comments 😉💗 Thank you for visiting my post❣️
You bet I am! I'm all over it like Comet Cakes!!! 😍 Also just wanted you to know... I'm in the comments and #ISeeU. ❤️
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