Parenting

We’re off to Holland, again……our Autism journey.

Welcome to my first blog post!!  I must admit, I have thought about writing a blog for a while, but have been procrastinating! But today, I’m just going to do it.  Getting my thoughts onto a page can only help this journey that I’m on – and if I connect with a few people out there who are going through the Autism rollercoaster, then its been a success!!

Our parenting journey has been a bit of a wild ride for us (I’m sure for many others too!). I have two bouncy boys, Monty who is 6 and Theo who is 2.5.  6 years ago, when I was pregnant, I was one of these smug women who bloomed in pregnancy! The ones, that I envied when carrying Theo………I didn’t bloom with him, I was so ill and looked like I’d been dug up!

His birth was difficult, but he arrived safe and sound.  He was a tiny, delicious, blue eyed, blonde haired bundle of delight.  Indeed, as many of us do, I was catapulted into Motherhood without a clue what I was doing for a good while, I felt like I was wading through treacle in a haze of baby vom and strong coffee. A bout of Post Natal depression (that’s a whole different post!!) didn’t help, but after about a year, I thought……finally….” I got this….”

Monty’s Development

However, I had a nagging feeling about Monty’s development that wouldn’t shift.  I’d take him to playgroups and began seeing difference between him and other children of the same, or even younger age. I’d see other toddlers babbling, pointing or engaging with their carers, communicating with eye contact or sharing toys with them. Monty didn’t really play with anything, he often looked vacant or just sat and grizzled.

Pandemonium ensued if there were any loud noises – he’d cover his ears and have a meltdown which was far beyond the ‘normal’ realms of a toddler tantrum.

 

Monty was diagnosed with Autism just before his 3rd birthday

Communication Difficulties and Autism

This went on for a few months and as he got older he was making no attempt to walk – when he ‘furniture surfed’, he did so on his tip toes and he never would never put his foot flat on the floor.  He’d sit outside and throw stones at the fence for long periods of time, trying to transition him onto another activity would be met with fierce resistance. He would fixate on anything with lights or music (my sanity was questionable by this point……Baby Einstein has a lot to answer for) and constantly turned switches on and off. Then there was the walking. By 18 months there was no attempt to stand unaided, or put one foot in front of the other.

He had no words.  Of course, this is not unusual for toddler, and many are late to talk. But speech and communication are different things. He wouldn’t actually communicate non verbally either– by that I mean there was no pointing to draw my attention to objects. He had limited eye contact and found engaging with others difficult. He began using my hand to drag me to what he wanted rather than pointing. He couldn’t understand any instructions, even ‘no’ when he embarked on something dangerous. Many toddlers may be late to talk, but the difference with Monty was, there was no attempt at communication or any understanding of the spoken word.

Seeking Help

I knew nothing about Autism, but something prompted me to take him to the doctors.  In the back of my mind I knew.  I did a bit of research and things seemed to ‘fit’, but I was hoping the doctor would dismiss my concerns and send me on my merry way.  After all, he was only 18 months and still developing. But she didn’t and we were referred to a Paediatrician

A year of assessments and appointments ensued.  After the first Paediatrician appointment Global Developmental Delay was mentioned, but so was a possible ‘Social Communication Disorder’ for which further assessments were needed. I don’t remember much about that year, it’s a blur of confusion, anxiety, frustration and isolation.  No-one else I knew was going through this, nor did I know anyone who’s been through it. Whilst everyone told me, ‘he’ll be fine’ and the dreaded words ‘all children develop at their own pace’…………I knew. Peoples words of reassurance felt trite and meaningless despite them being well meant. What we were going through felt devalued. I was his Mother, and I knew he had Autism.

Early Intervention For Autism

In January 2013, my gorgeous boy was diagnosed with Autism ( Autistic Spectrum Disorder) Although I knew it was coming I was heartbroken. This wasn’t how motherhood was supposed to be.  This wasn’t the future I wanted for my darling boy. I was so angry and hurt, but I didn’t know why at the time. But with that was a felt a sense of relief that he would get some help. So I pulled my big girl pants up and got on with it, silently dying a little more inside when his nursery peers began chatting away or they played with their toys appropriately or pointed things out to their parents – I wanted to experience that part of parenthood. At this point, I didn’t know what Monty’s future would hold and tried to hold it together for the sake of my boy.

People said to me that his Autism diagnosis was for too early. He was 2 months off his 3rd birthday. But he had early intervention, speech therapy, group therapy and as parents we were sent on courses to try and help our son, and us, manage his day to day life. Monty is now 6 and despite areas in which he clearly struggles, he is at mainstream school, he is verbal and is beginning to make a few friends. He is also very clever. He loves football. I am beyond proud of him. If I hadn’t have got him diagnosed so early, his journey maybe completely different.

Baby #2

It took me 4 years to decide to try for another baby. Quite frankly I was blooming knackered, scared of the birth, scared of getting PND and above all scared I would have to go through this journey again.  But Theo came along in April 2015.  He is the prettiest little boy, with ringlets, and big beaming smile and eyelashes about a metre long. Imagine the relief when at his one-year check, all was fine, and he was developing just fine. He babbled away like there was no tomorrow and was an incredibly social baby!

The months went on and by the time he was 16 months old, those old feelings and thoughts returned. Perhaps I pushed them aside, denied them, but knew what I had to do. In February this year, I took him to the drop in Health Visitor clinic and said, ‘I think Theo has Autism……” …………. the floodgates opened, and I sobbed like a baby in front of these poor Health Visitors.

Theo. He is going through the Autism diagnosis process

So here we are, going through the process again. But this time, I don’t feel relief at the moment that he is getting help early and being assessed for Autism. I feel grief and pain. I feel so bloody angry at times, I can feel the pain in the pit of my stomach. I feel envious of those parents who will never have to go through this once, let alone twice.  It seems so unjust. I feel grief that I will never get to experience what it is like to have a toddler who laughs and points whilst babbling “Mummy look…. car!”

When Monty was diagnosed with Autism, someone gave me this short story to read. At the time, I didn’t fully grasp its true meaning, but 4 years later, it encompasses much of how  I feel………

Welcome to Holland

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this…

When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum, the Michelangelo David, the gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

“Holland?!” you say. “What do you mean, Holland?” I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to some horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

So, you must go out and buy a new guidebook. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It’s slower paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around, and you begin to notice that Holland has windmills, Holland has tulips, Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy, and they’re all bragging about what a wonderful time they had there. And for the rest of your life you will say, “Yes, that’s where I was supposed to go. That’s what I had planned.”

The pain of that will never, ever, go away, because the loss of that dream is a very significant loss.

But if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.

Written by Emily Perl Kingsley

A Different Adventure

Holland is beautiful and all, and I have had some amazing experiences, and extreme highs and lows.  But I  feel that everyone else is in Italy without me.  I feel everyone I know is together there having a wonderful time.  I just wanted a chance to be there too. This is why I started this blog, to reach out to people, to support each other – I’m sure every parent at some time or another feels someone else is doing it better than them. The truth is, we all have our low times – the main things is talking about them and listening others stories with empathy and support

I feel very lost at times, raising one child with Autism is hard, raising two seems impossible right now.  Having two children with Autism certainly is a daunting prospect. But this is our journey and our reality. Just like many other parents have their reality and their battles to fight  Yes, we are tired, yes, I feel angry at the unfairness of it all and yes sometimes I cry until I can’t breathe, but I will never stop fighting for them. I will carry on enabling them to be the best they can be. I adore my boys and Holland is such a beautiful place – and there is so much yet to discover.

Team Wilder at Whistable

 

38 Comments on “We’re off to Holland, again……our Autism journey.

      1. Hi Suzie, the best thing moms can do is to keep talking about our special needs kids. It is normal and it is everywhere. Inclusion for all moms is just as important as it is for our kids.
        I was surprised after my oldest was diagnosed with cerebral palsy following a horrific delivery that my youngest would have autism.
        I thought this can’t be right, I’ve already got a special needs kid.
        I am not sure which disability is more exhausting. But already having one special needs child did make navigating my autistic son’s rights, school supports and therapies much easier as I was already a part of that community.
        Good luck on your journey.

        1. Thank you for your comment, Lisa. Indeed, it really doesn’t seem fair does it? I am finding getting support more difficult the second time round!!!

  1. The Holland analogy got me too. I too sometimes get the ‘why us’ and the feeling it’s unfair. I struggle to see everybody with their perfect lives and want that too.

    Your first post was a brilliant one x

    1. I totally understand that – I was like that for a very long time and still am when I’ve had an absolute shocker of a day! Somethings ‘normal’ day to day things seem so out of reach! Its getting better though, slowly! If you ever want to message me for a moan or a whinge, feel free!

  2. Oh my Suzi! I love it! Haven’t got children as you know but I know from what you have told me what you have been through. I can’t wait to read the next one.

  3. Great post. Another frequenter of Holland here although I had the surreal experience of thinking I was in Italy but was just really bad at Italian for 3 years, once I got the right guidebooks things got so much easier for us. I am lucky that I have friends with kids on the spectrum too which is incredibly powerful. I often wonder about my toddler too; he is so similar to my eldest in some ways.

    1. Thank you Cara! Its so hard with my youngest – he is so very different to what Monty was at that age and probably why I didn’t have ‘that feeling’ about him for quite a while. He had the classic ‘regression’ thing where he just stopped doing certain things and saying words. I was hoping that it was learnt behaviour but they are so different it couldn’t be!

  4. What a beautifully well written analogy of what your life is like. I have many friends with children on the spectrum, and while I don’t pretend to know what it’s like, I can empathise.

    I have a friend with two grown up boys on the spectrum. Sadly it was too late to get the first one diagnosed, when they realised. She says it’s really hard. Saying that her eldest has a wonderful girlfriend who fully understands his behaviour and they have been together for a long time. He works too in a full time job.

    Keep on with the blog. Looking forward to reading more insight into your world xx

    1. Thats so good to here Naina! I do often worry about their future but its good to know that others on the spectrum are doing well!

  5. Suzie, this is an amazing heartfelt blog, you have an amazing little family who are truly blessed to have you , I have a friend who has a son with Autism, been through this with her, all the highs & lows, and reading your blog reminded me of that time with her, all the worries, & heartache. Would love to put you in contact with her as her little boy is now 10 and a wonderful, funny , cheeky little lad. I know we don’t see much of each other but always here , family stick together, look forward to your future blogs!! Xxxxxx

    1. Ah thank you lovely! It was quite hard to put it all out there but glad I did! That would be fab, happy to be in contact with anyone going through the same thing! Appreciate your support and hope all is ok with you xxx

  6. A lovely heartfelt blog beautifully written 💖
    You have certainly touched on the feelings I myself feel .
    I as a parent of a daughter with ASD & with going through the same process with my other Daughter too when the professionals make you feel like you are disbelived 😣
    I never in my life thought I would be a parent to two beautiful girls who have ASD that was never my dream but I as their Mummy will fight for them always they our my life 💖

    So thank you for sharing your heartfelt blog 💖xx

    1. What a fab Mummy you are, sometimes I don’t feel like I have the energy to do it all over again but there is no choice is there?! Its so very hard, but we will get there!!

      1. Bless ya thank you 💖
        I know that feeling very well unfortunately 😣
        Yes we don’t have a choice to go through the process again ….But it would help if professionals would make you feel that you know your child more than anyone & not made to feel disbelived like they have made me feel right know cause my daughter Autism is slightly different to my other daughters 😣😢
        But I know not every child on the spectrum is the same so nor should they think cause my daughter’s Autistic Traits are different that she has not got it😣😢
        I know she has it …I live with Autism 24/7 , monthly & yearly so I know my daughter both of them🤗
        So I will fight as they need me to fight for them💖
        It should not be that way🙈😣
        So the fight continues 👊
        Yes very hard at times but there we will get there 😍

        1. Boths my children are very very different! People keep saying that Theo’s traits are learnt behavior from my oldest. Which isnt true as they are so so so different!

        2. Yes the same for both of mine 😣
          That’s what I hear from the professionals that Emily-Rose is copying Lillie but it’s untrue also as both r very very different. 💖Also get Emily-Rose completely different at Nursery also 😣
          So professionals need to listen to us as parents as we live with Autism on a daily basis they don’t & we know the traits very well👊

  7. Haven’t seen you for ages Suzie but this blog was beautifully written and so heart felt. Well done , it must have been a daunting and emotional task. There needs to be a new emoji invented which means laugh/cry/sad/smiling all at the same time. Perhaps it can be named the ‘Holland’ emoji. Bless you

  8. Thank you for this Suzie. You will have no clue who i am but I lived in halls with Isaac. My son has a diagnosis of developmental coordination disorder, various delays and we are now finally getting assessed for ASD after years of trying. Thank you for this blog. It helps to be reminded im not alone over here in Holland.x

  9. Hi Suzie, I remember reading the Holland story about 27 yrs ago! This month we will celebrate Nick’s 30th Birthday…. The journey in Holland has had its ups and downs but we are still hanging in there, all the best to you and your family… The Larose’s

  10. Well done for writing such a fab first blog. I’m sure it will gain a huge following and bring you and other parents residing in Holland the support and understanding you need. Huge respect and admiration x

  11. I love your blog. Your words seem to be taken from my mouth. Thank you for sharing your journey, for being honest and just so informative.

    My son will be two soon and although I have enquired about the possibility we will be going to Holland so far the professionals have said “no”, but I know we will go there one day soon.

  12. Hi Susie
    I have a 22 year old son who has Aspergers. Your first blog was so well written, I could not have done it as well as you. I am a single parent trying so desperately to manage my son. Growing up was more than difficult, some days were like years. I was waiting for the day to end. Life then was very different to now. Nobody spoke or mentioned Autism. Now it is out in the open, TV programs, the A Word……… it has moved on lots but not enough, lots of work & understanding is needed. I did fi d professionals rather text book like rather than talking to me as a parent. Life does get easier as they get older. My son has a job full time snd is doing very well. I wish you only strength to cope and manage your children🌻

    1. Hi Mel – what a lovely comment, thank you! I’m so glad your son is doing well, you must be so proud. It’s a testament to you too that you have supported him so well that he can go out into the world and be independent. xxx

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