Tom’s World: One Mother’s Story Of Having A Son With Aspergers

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One night, when putting Tom to bed, I told him that he was the best boy in the world and if I could have picked any baby from all the millions and billions in the world, I’d definitely have picked him. He replied to say, ‘But Mommy! It doesn’t work like that! The babies choose the family! When I was in the other world, I had goggles on and I looked down at all the families and I looked at their names and surnames. When I saw you, my goggles froze. In the other world there is a portal shop and I went in to the shop and saw a red, blue and yellow portal with your name on it. I wanted it but another baby had it and tried it but it didn’t work (we had a miscarriage before Tom) so that baby went to a different family and I got the portal. The only thing I wasn’t too keen on was the noise that the portal made on the way to the tummy. It made a ‘whooshing’ sound but it was sort of fun because it was like being on a slide. And then I was in the tummy.’ My husband and I could not get over this. What IF he’d actually remembered life before birth? It was a lovely thought, mainly because it sounded like such a happy place.

Tom was just three when he was diagnosed with a high-functioning Autistic Spectrum Disorder, also known as ‘Asperger Syndrome’. Aspergers is characterized by difficulties in social interaction and nonverbal communication, alongside restricted and repetitive patterns of behavior and interests. This is Tom to a tee. He is now seven and struggles every day with huge anxieties around ‘new’ people (people Tom has either never met before or people that he has met but make him feel anxious) and any changes to his routine.

I was relieved when we got our diagnosis. I’d spent three years feeling like something wasn’t quite right with Tom but nobody else seemed to see it. Well-meaning friends and relatives reassured me that Tom would catch-up with his peers or that he was just ‘going through a stage’. My mom, however, told me to trust my instincts and to go back to the doctor until I felt I had some answers.

Tom was a late smiler, and all of his developmental stages were delayed too. He never seemed happy and every day was a battle for him. I tried not to compare Tom to other children but it was hard when, at play groups, the children were laughing and playing and yet my child was crying, distressed and constantly unsettled. From the moment he woke up until the time he closed his eyes at the end of the day, Tom was always pretending to be something or someone else. He was never TOM. One day he’d be a puppy all day and the next he’d be a fireman. He seemed to get some confidence from hiding behind these personas, as if he didn’t trust or believe in his own.

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The diagnosis opened doors for us in terms of getting help for Tom and the right kind of support, and he has absolutely blossomed since then. Progress has been slow and difficult at times but Tom has just turned seven, and we now have a happy, confident, sensitive little boy with a wicked sense of humor and an unquenchable thirst for facts.

Tom is very self-aware. I told him about his ASD when we were in the car, alone, one day. The time seemed right. I felt that knowing and understanding would help Tom, and it really has. He frequently surprises us with his understanding of himself and the world around him. He always makes us laugh with his quirky observations. I try to record the things he says because I think they’re clever or funny or just worth remembering. Here are some of my favorites:

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One day Tom said ‘When I close my eyes, I see loads of different colors. It’s like a toolbox for my creativity’. I adored this because it’s so true but whoever stops to think that?!

When Tom was just four, we were driving down our road and passed a little girl who looked like our neighbor. When Tom realized it wasn’t our neighbor, he got upset. When I asked him why he was upset, he said, ‘When I see a new person, I get really stressed. If the person says ‘hello’ to me, the brain is so worried that it doesn’t send the message to the body to say ‘hello’ back. I loved this. It perfectly demonstrated why Tom feels he can’t speak when someone he doesn’t know speaks to him. It showed such an insight and understanding of his own condition and limitations.

At bedtime one night, I told Tom to close his eyes and imagine he was on a beach with Mommy, Daddy, and our dog, Pippin. I told him to imagine the sand was white and the sea was blue. The sun was shining on his skin. We were lying in a hammock. Tom said, ‘Wait! What material is the hammock made from? Is it leopard skin? If it’s leopard skin I’m not getting in to it. I do NOT lie in hammocks made from endangered animals.’ This is so Tom. He loves animals and is obsessed with global warming and the safety of our planet. Even when imagining a far away land, he still manages to worry and be very clear on his ethics.

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My husband brought Tom a present home from the office one night which Tom described as, ‘The BEST present EVER’, having ‘the most interesting parts in the Universe’, and ‘absolutely FULL of tech’. It was a lever arch file. It showed so beautifully how he finds beauty and interest in the most simple of things.

My friend asked me once what I’d do if they discovered a cure for autism. I’d cure it for Tom because there’s no doubt it would make life easier and less stressful for him, but for us he is just perfect the way he is. We love his quirks, his innocence and his unquenchable fascination for facts. He makes us laugh every day, and little things are huge achievements for us; Tom has only just learnt to jump, and sing. We never take anything for granted.

 

 

20 Comments on Tom’s World: One Mother’s Story Of Having A Son With Aspergers

  1. kirsty d
    February 11, 2014 at 6:41 pm (4 years ago)

    what wonderful wonderful little boy (who sounds like he has a pretty awesome mom too) i really enjoyed reading this thanks for sharing – x

    Reply
  2. Yonda
    February 12, 2014 at 11:02 am (4 years ago)

    Love this

    Reply
  3. hannah
    February 12, 2014 at 1:56 pm (4 years ago)

    what a fascinating insight into the mind of someone with this condition. the line about the hammock made me chuckle. i can’t imagine it was easy coping with the diagnoses in the early days. we all have an image of having this perfect child. but then its a rather wonderful thing when you realize that the imperfections are what make them God’s unique creatures.

    Reply
  4. Zoe
    February 12, 2014 at 2:20 pm (4 years ago)

    I have had the pleasure of watching Tom grow and develop through his lovely mummy’s updates on Facebook. He really is the most beautiful, clever and totally hilarious little boy. A credit to his wonderful parents. Adore little Pea I do xx

    Reply
  5. Jennifer
    February 12, 2014 at 2:35 pm (4 years ago)

    Beautifully written blog which really catches the essence of your son. He sounds amazing and how wonderful to hear a parent of an autistic spectrum child talk so positively about how he enhances your life. Also slightly freaked out (in a good way) about his description of the other world before life! Awesome :) xx

    Reply
  6. Sarah Sundberg
    February 12, 2014 at 2:41 pm (4 years ago)

    Tom is such a gorgeous little boy. I love his wit and takes on the world.

    You’ve both done a fab job and that is so evident in that lovely little guy. I look forward to reading more!

    S x

    Reply
  7. Sue
    February 12, 2014 at 3:06 pm (4 years ago)

    Lucy, Tom is a really special boy … It’s been lovely seeing him grow and develop x

    Reply
  8. Jenny
    February 12, 2014 at 3:14 pm (4 years ago)

    Beautifully written Lucy – thanks for sharing. I loved hearing his appreciation of a lever arch file – a boy after my own heart!!!

    Reply
  9. Tas
    February 12, 2014 at 3:55 pm (4 years ago)

    Wow.
    x

    Reply
  10. Stephanie
    February 12, 2014 at 4:55 pm (4 years ago)

    Such a moving, funny, loving article. He sounds amazing Lucy & a credit to you all. X

    Reply
  11. Calum
    February 12, 2014 at 4:55 pm (4 years ago)

    Hi Calamarimac asked if I had seen your IG post, which I hadn’t. I had only just that moment logged in to check IG. I then found the link & read. Wow! You know I love your IG & twitter posts esp the shots of Tom (& esp so shots of Tom & Dad). L went to Camphill school & from that I learned a bit about anthroposophy. Anthroposophy says the spirit germ (our human essence distinguishing us from other living things) is reincarnated & chooses the parents for the child the spirit germ will be born in to. Tom’s choosing you memory sounds very like that to me. Now, I am not an anthroposophist but… Also, anthroposophy describes human development in 7-year phases. Steiner (anthroposophical) schools don’t take kids until they are 7 years old, cos their view is children are not developmentally ready for formal schooling until they are that age. L is my adopted daughter, but this explanation gives me a story to explain to me how she was born to her natural parents so they could give her up for adoption & I could become her Dad. You may recall L has ASD as well as Down syndrome. Love to you all Calum

    Reply
  12. Tracey Reed
    February 12, 2014 at 5:19 pm (4 years ago)

    This really sums up Tom! I had the absolute pleasure of looking after Tom at nursery. This was at the beginning of his official ASD journey and despite the difficulties he faced everyday he never ceased to bring a ray of sunshine to my day, with his wonderful way with words and lovely sense of humour he was a joy to spend time with! I miss him all the time! He really is an amazing little boy and a credit to his wonderful parents! It’s heartbreaking that such individuality has to come with such enormous challenges!

    Reply
  13. John
    February 12, 2014 at 11:24 pm (4 years ago)

    What a beautiful and vivid imagination Tom has. I love the part about how he chose his parents through the portal, a part of me hopes and believes that to be true.

    Touching story

    Reply
  14. Stan.
    February 13, 2014 at 12:40 am (4 years ago)

    I have a grandson who is in his ways exactly like Tom, My grandson’s is 12yrs old now he’s 6 foot one. He Does not like a noisy area, He’s comfortable with people he knows but does not like meeting strangers. He’s not Into sport, I think it’s a coordination problem with him. His computer teacher says he knows more about computers than he does. He still has days when he loses the plot,lucky that his school understands his problem.He once to his Dad,you don’t know that it’s like in my world,Dad.I think he’s right,we don’t know.All we can do is give them love,and be very patient and try to understand their world that they have to live in.Tracey you are so right they brighten up your day the remarks he makes just leave me in wonder at times, there’s so much logic in what he says at times.

    Reply
  15. Katy Tozer
    February 13, 2014 at 3:12 am (4 years ago)

    Wow! Personally knowing and loving Lucy (Toms wonderful Mom) Im very proud to read her great article about the amazing Tom and his quirks, fact sponge of a brain and her daily life and love filled home. Well done Wargey Damp eyes here. So proud of you and Tom. Your writing is spectacular please write more.

    Reply
  16. Debbie Parsons
    February 13, 2014 at 6:28 am (4 years ago)

    I want to climb into the laptop and give you both MASSIVE hugs! You know that your updates on Tom’s genius have been warming my cockles for years – I have never met him… yet I could not live without him! You area STARS x

    Reply
  17. josie
    February 20, 2014 at 8:59 am (4 years ago)

    simply beautiful x

    Reply
  18. Peta
    February 25, 2014 at 7:29 pm (4 years ago)

    this gave me goose bumps. a wonderful moving piece. peta

    Reply
  19. ria
    March 10, 2014 at 7:46 am (4 years ago)

    what a total dude. brilliant

    Reply
  20. Natalie
    March 26, 2014 at 11:40 am (4 years ago)

    Hi Lucy! When I read the first few paragraphs of your story, I almost fell out of my chair because my son, who also has high functioning Asperger’s, told me almost the same exact pre-birth story. I wonder if this is an Aspie thing? It’s just amazing!

    He’s 13 now, but when he was around 6 yrs old, he started talking one day about how he ‘chose’ me, before coming into the belly. He describes that he was in a big room, lots of white and some ‘angel’s in white where next to him, helping him. They brought him to a sort of dome or orb, in which he could see different people, almost like google earth when you zoom in. And that it zoomed in on some people and he saw me walking, in the streets of NY, he described what I was wearing and what I looked like. This was exact to a T, and he couldn’t have known what I looked like the year I got pregnant. He said that when he saw me, he knew I was the right one. So after he chose me, they explained some things to him which he can’t remember well and then after that he was ‘sent off’ to join me.

    Now, he was very young when he told me this, but when I ask him to repeat it now, he still remembers this same experience down to every last detail. Also, there was no way for him to just come up with it, or make it up, since he was so young.

    I think this is so cool that they remember and I wonder how many other Aspie kids are intuitive like our sons are, and remember their pre-birth experiences?

    Thanks again for sharing your story!

    Reply

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