As promised, I’m going to tell you about my son’s autism and how it make me feel. Also how it has changed my world.
Before I start can I tell you his story?
If you have read his story already, which I know many of you have, your welcome to skip and read what comes after (after the picture). His story from birth is a long and emotional one, makes me cry thinking about all he’s been through in such a short time really but here we go.
My son has autism.
I call him Panda, the reason for this is his cousin couldn’t pronounce Alexander and called him Alexpanda, so Panda stuck for me, for years it stuck with everyone but now it’s just me.
He was found to have stopped growing at 25 weeks into the pregnancy, found at the 28 week scan.
They wanted to get him out there and then, but there was no NICU cots available (What Is the NICU? When babies are born early or have health problems or a difficult birth they go to the hospital’s NICU. NICU stands for “Neonatal Intensive Care Unit.” There, babies get around-the-clock care from a team of experts. Most of these babies go to the NICU pronounced “NIK-yoo” within 24 hours of birth.) He was rushed straight in after birth.
His mother was kept in hospital throughout all of this, waiting for a cot to become available, it felt like forever.
At 33 weeks a cot became available at Glasgow hospital, so the next day they were getting her prepared to be transported by ambulance there.
As they were preparing her and taking her to the ambulance there was a phone call come through to DR Davis (no relation to me) her amazing doctor, our hero.
MY HERO WHO SAVED MY SONS LIFE.
The phone call was to tell him a NICU cot had become available at Worcester hospital.
We had an angel looking down on us that day, so she got transferred to Worcester straight away with the cot reserved, thanks to a massive persuasive DR Davis (who saved my sons life if I didn’t mention it)
The Drs and nurses at worcester were amazing, like you would never believe.
He was then taken out the sun roof, weighing a tiny 3lb 3oz.
He was then taken to the NICU unit. The nurses there were the best ever, they saved my sons life too. They saved my life in many many ways by saving my son.
He then lost weight (as all babies do after birth) he went down to a tinier 3lb. He was jaundice too (Jaundice is a common and usually harmless condition in newborn babies that causes yellowing of the skin and the whites of the eyes).
So he had to go under a blue light, a special light called phototherapy.
Phototherapy is treatment with a special type of light (not sunlight but similar live UV). It’s sometimes used to treat newborn jaundice by lowering the bilirubin levels in your baby’s blood through a process called photo-oxidation. Photo-oxidation adds oxygen to the bilirubin so it dissolves easily in water. This makes it easier for your baby’s liver to break down and remove the bilirubin from their blood.
In NICU there were other premature babies, it was scary, some were on the edge, some being kept alive by machine. Such a scary place to be, but the most amazing place I’ve ever been, because the things these nurse do 24/7 none stop to keep these babies alive is unexplainable. They are the angels of the world.
A couple weeks went by and a cot became available at Walsall hospital, my home town. So Panda was transported back home. Then a week later he was released from hospital.
It was a tough time, a very expensive time too as I was having to travel to Worcester every day, and getting food there too, his mother stayed at the hospital, thanks to the nurses arranging that at the time, because it was an hour drive there and an hour back.
I was still working at the time and had my payernity leave when he was home.
Anyway let me now tell you about how he was diagnosed with autism.
You see my son has autism, along with that comes anxiety and SPD (Sensory Processing Disorder) at 3 years old, that means his senses are very much difficult to control and very over sensitive with many things. Bright lights, especially the sunshine, hurt his eyes. Little things like a hair on his arm can cause him pain. Too much of a crowd can be over whelming, he can breakdown in a crowded shop and freak out. Loud noises hurt his ears, like music too loud can over come him, too much noise in a shop can make him have an episode of lashing out.
If you see a child, or even adult anywhere freaking out or “being naughty”, they are not necessarily playing up or being naughty, they may have autism (never judge).
Let me also say something, having a child with autism is very very tough, it is not easy at all, the slightest thing can cause a meltdown.
People with autism are very obsessive over things, like my son is obsessed with signs and logos, shops (because of their signs and logos), and most of all buildings, especially weird/awesome shaped buildings.
Which then brings me onto saying, they are very very clever, my son wants to be an architect and builder. He remembers things from years ago like 2 or 3 ect, with strict clarity. He can remember a shopping list for days, if I forget anything on a shopping list he will tell me, and if I don’t get it or explain to him that item has been removed from the list before hand he will freak out.
He was then diagnosed with Autism at 6 years old, 5 is the standard age for testing. At a very early age we was told he may be diagnosed with autism as he grows up, but will not get officially diagnosed until 5.
At the age of 5 he was diagnosed with hyperlexia unknown type 2 or 3 (that is triats of autism) he was kept on by the panel which is rare to observe. Hyperlexia is the abilty to read far beyond their expected age. So at 3 years old he had the reading age of 6. Now at 7 years old, with the odd pronunciation mistakes he can read almost everything.
As I said at the age of 5 he was diagnosed with the hyperlexia with traits of autism, which is rare and he would grow out of by the time he reaches his 20s, but he would need to be tested 12 months later to see any change. At 6 years old there was no change, that told them he had autism, thus then diagnosed with autism, SPD, ADHD, hyperlexia and development delays with speech and a language disorder called echolilia ( he repeats everything a few or loads of times, for example, “can I have some sweets” for like 10 times even after you have said yes right up until he get his sweets) and speech delay (speech was delayed from “normal” average speaking age) and he also developed a stammer same as me for a while (he still stammers now but rarely)
He had to have blood tests from birth and on a regular basis because he was struggling to put on weight, and they had to test him, at one point it was weekly.
He is now afraid of needles, as you can imagine, and petrified of doctors and nurses, hospitals and doctor surgeries too, and any room that looks or feels like a hospital or doctors room.
So yeah sorry telling this story has been deep for me, brought up so many memories, and I’m emotional as hell. So please forgive any spelling or grammar mistakes.
Some info above was used from the NHS website,for clarity and explination purposes, not all info was used as it goes into deep depth.
So thats his story so far.
Now let me tell you it from my point of view as a father with a child with autism.
It was hard to understand at 1st. I wasn’t really aware of autism fully, I knew it existed, I just didn’t understand it. I didn’t know what it was like to have autism, or know anyone with autism.
At 1st it just felt like he was being naughty and doing anything for attention. Before I knew he had autism, I knew there was something there. Something we didn’t know. Just something that needed attention.
For the life of me I couldn’t figure it out. Obviously I couldn’t I wasn’t a doctor or professional someone that knew about this kind of thing.
Something wasn’t right, not in a way of saying he was wrong, oh god no definitely not he was perfect always has been and always will be.
With him being kept an eye on by all these professionals, seeing him not putting weight on as babies should, but everything was normal because he was premature.
It broke my heart every single time they took blood from him, that cry broke my heart. I wanted to punh the doctor or nurse for hurting my son. Hurt them like they hurt my pride and joy, but obviously I knew they were just doing their job. So with massive reluctancy I let them do what needed to be done. It hurt me to see him get hurt like that, it bought tears to my eyes every time.
It was tough.
I was working nights, at the start, and day time was my sleep time. As he was a baby I would be awake with him when he murmured, as he was premature he slept a lot. He slept day and night for just over 12 months, only waking up for feeds.
After the 1st 12 months, he started to be awake more often. He started weaning off milk a lot later than others, he started talking a hell of a lot later, but his 1st words were daddy (yeah proud till this day).
Then came the speech problems, then the stammering. More hospotal appointments, more professionals, more appointments to keep up with.
So this went on for years.
As he started growing up, he became stronger obviously. Blood tests became a fight, more than a few times it would take 3 of us or more to pin him down to get blood. Literally trying to get blood from a stone, only this stone fought back.
Then came the “naughty behaviour”, the obsessions.
With me working nights, he wanted daddy all the time, very often I’d have to come out of work to settle him down, luckily I lived 2 minutes away from work at the time, I would make up the time obviously and tell my superiors and they were totally understanding.
It was tiring, and stressful.
I’ll admit before I understood what was happening and why he was the way he is, I would get cranky, I would shout at him to behave. I’d punish him with time out or the good old fashioned naughty step, take toys off him to punish his “bad behaviour”. Deny him sweets because he would show me up in the shops, leave my shopping behind and take him out the shops because I was embarrassed. Pretty much like any other parent would with any other child.
So much shame dawned uponed me when I learned he had autism. The feeling of betrayal to my own son, my own flesh and blood. So many times I’ve cried for punishing my son for something that isn’t his fault, for something he can’t help or stop. So many times I’ve layed here thinking, I should have known, I should have been different in the way I handled things.
Don’t get me wrong I’ve never hurt him physically, never ever would I do that.
But the emotion hurt he must have felt, the thoughts he must have thought, like it’s not my fault I’m bad daddy.
In reality, he was never bad, he was never naughty. When he now says he’s been naughty I tell him he’s not naughty.
He just saw, heard and felt the the world differently than anyone else.
He couldn’t and can’t handle things the way you and I do.
Everything is different for a child with autism.
I felt like a bad dad, like a horrible dad. I should have known.
In real life, you will mever know. Not until they are diagnosed, you may have hints and traits, but they cover a wide spectrum of things.
Noone understands until that day you get told your child has been diagnosed with autism.
Once you know, everything clicks into place. All the pieces start to connect.
You understand all them time’s you didn’t before. You see the world differently.
Every day I look at him and think, damn he will never lead a normal life. He may never get his dream job, he may struggle to make friends in future, any friends he does make he may not keep. I feel this because not many people will understand him and the way he is.
He is already socially awkward, he doesn’t see the world like we do, most days hes off in his own world, often an imaginary world.
I think most days, will he make friends? Will he keep friends? Will he find a girlfriend? Will he have kids of his own and be able to help them grow? Will he be able to keep a job? Will he have to rely on me and his mother forever? What will happen when we are gone? Will he lead a normal life?
It breaks my heart to see him this way sometimes, it kills me inside to know he won’t live a normal life.
Then all of a sudden he looks at me, deep into my eyes and smiles, we connect on a level I didn’t think 2 people could possibly connect.
All that wander and imagination I see every time I look into his eyes, they go deeper than anyone I’ve ever seen, something special resides in this little boy. I know he will be ok, he will be better than ok. He will be something AMAZING.
Them times when I have to leave him when I drop him back to his mothers, I find myself sitting in the car looking at him, staring at him and he’s staring back. We’re looking deep into each others soul and we both know we love each other more than anything in the world. He knows no matter what I’m there for him, if he needs me all he has to do is pick up the phone, and he does and he knows I’ll a swer every time, I’ll drop everything and talk to him. If I miss a call I’ll call him back asap and he understands I’m sometimes busy.
I know if I’m feeling down and upset he will come to me and hug me and hold me, at 7 years old he is my rock and he knows it.
What gets me every day is the fact my son will be different to everyone else, my son will be amazing.
My son has autism, and that is perfectly fine.
AUTISM ISN’T A DISABILITY, IT’S A DIFFERENT ABILITY.
Never a truer word said than that. My son has autism and he is perfect.
My son, my rock, my world, forever and ever.
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