Life’s rich pageant.

Please excuse my absence here, but as you will see, we have been going through a rather stressful time of late.

You may recall that one of my earlier posts was how we came to discover that Boy-Boy has a significant hearing loss. This has, as you may imagine, posed some difficulties to us as a family. These are however, challenges which I believe Team Fun has embraced and, I can honestly say that  have0 added an extra richness to our lives. It seems though that we are to have even greater wealth added to our day-to-day existence.

About five months ago, Boy-Boy’s speech language therapist (SLT), noticed that the way he is learning to communicate is markedly different from his hearing impaired peers. Quite how it is different I am not certain, but what I can tell you is that he has learnt whole sentences, even copying the intonation as he has heard it. I didn’t think that this would necessarily be a bad thing, but the difficulty is, that he is only able to give prescribed responses to particular questions. An example which springs to mind is that when say to him “How are you?”, he will reply “ Yes, I’m fine.” However if you were to say “How are you feeling?” he wouldn’t know how to respond, and would most likely repeat your question back to you.

“Oh well,” I thought,” there are worse things in the world”, but this was just the tip of the iceberg. He is very obsessive particularly about letters, colours and shapes, and has on more than one occasion told me that I am not drawing a diamond, but a rhombus. I may have mentioned that he has quietly taught himself to read. He doesn’t seem to have a great deal of comprehension about what he has read though, in fact he takes a similar attitude to reading, as I do to eating; books are meant to be devoured not really enjoyed.

Having listened to the SLT, Mrs L. and I arrived at our own conclusions and started doing some research on Asperger’s syndrome, and more Autism.

It immediately became apparent, that here in New Zealand, at least, there is no distinction between Asperger’s and Autism, but they are now both covered under the broader term Autistic Spectrum Disorder (ASD).

We were referred to see a paediatrician who after initially seeing us, recommended that we see him again in three months. He said, that often a diagnosis is sort of made by committee and so he wanted to gather as much information as possible. That second appointment was last Friday, and he told us that Boy-Boy does feature on the Autistic Spectrum.

Although I had assumed as much, this news still came as a tremendous blow to me. I had desperately been hoping that I had been given two and two, and somehow reached five. Immediately after the appointment, we went to the golden arches for a debrief, and I just wanted to cry. I was so upset that I didn’t enjoy my lime milkshake anywhere near as much as usual. I didn’t even notice that it was actually a hot chocolate!

When I actually thought about it though, I realised that my tears were selfish. Although I was upset for Boy-Boy, I was more upset for me.

He is a very, very bright boy. I don’t know of any other three year olds who have taught themselves to read, or rudimentary maths, or the difference between a nonagon and a decagon (he does), and it is with this in mind that Mrs L. and I sought the advice of medical professionals. I sincerely believe that he is a very special boy, and that given the right tools, he has the ability to achieve something truly spectacular. But we have to know what those tools are, and where to access them. Now that journey has begun we can help him to realise his potential.

I must make it clear, that this doesn’t affect how I feel about my son.  I certainly don’t love him any less. Or perhaps it does, I may love him even more fiercely, as I know that his life maybe more difficult than would otherwise be the case.

Before causing outrage amongst other parents of children with ASD. I must make two things clear.

First, Boy-Boy is very definitely at the high functioning end of the spectrum, and is not as profoundly affected as some other autistic children (or adults).

Secondly, if I do or have put my foot in my mouth, I apologise. This is very new for us and we are still trying to work out what is what.

I feel immensely privileged to have him in my life, but the weight of responsibility is heavy on my shoulders. Usually I am a “glass half full” kind of a guy, and after some consideration, have decided that I will continue to be. How could I not be when I could be the father of the next Isaac Newton!

19 thoughts on “Life’s rich pageant.

  1. Ross you are an amazing father and both you and Mrs L are doing a wonderful job. If you can get your hands on this DVD it’s amazing and you will have inspiration pouring through your veins. I’m begging you to watch the movie Temple Grandin. An autistic women growing up and the achievements she has made. Also she has a book called the Austic brain. Think you can get it from amazon. I’m at a workshop at the royal deaf institute today to expand knowledge on integrating with our little guys. It’s run by a SLT and OT. Have loads of knowledge to share. Will send you and mrs L some notes if your keen. Just let me know. Thinking of you. Cheers rach

    • Hi Rach,
      Thanks so much for taking the time to read. You and Mr W. really are such a tremendous inspiration. We will definitely track that movie down (Mrs L. wanted to watch it tonight), and the book too, and any further tips (and notes) you can send our way will be very gratefully received. I hope that the conference is really helpful and can offer you even more insight than you already have!
      I hope that your wee girl is doing well, it was such a pleasure to meet her when you were last here.
      Take care

  2. I don’t think you have anything to apologise for. You sound like you are taking this life altering news really well. I wish I had something profound to say but all I can do is wish you luck for the future. I think your little boy has great parents.

  3. What a lucky boy to have such a loving, supportive Daddy (and Mummy). A new interest for the family. I wonder where this will take you all. New discoveries await. Sent with love.

  4. Thanks for sharing your perspective. I worked as a special needs teacher aide for 20 years. Some of the students I worked with were profoundly affected by a variety of conditions and disorders. Some had multiple issues but all had supportive, determined parents like yourself.
    My concerns at the time were about how these students would cope as they grew up. I am happy to say that I have attended 21st and 30th birthdays and the majority of these students managed fine- yes, support, funding, are essential but mostly understanding is the key. Best wishes for you all on this journey. And watch Temple she gives an interesting slant on Aspergers.

    • Hi Heather,
      Thank you for taking the time to read, and to respond. One of my major worries for our son is will he enjoy a “normal” life and it is reassuring to know that it is possible for him to thrive.
      Thanks again

  5. Hi
    What an honest lovely post. SLT’s are amazing so work hard with them
    Have you read the book the horse boy ? It’s about a dads journey with his autistic boy and horses have really connections with him and the freedom of riding.
    Also a lady called Noel Janis- norton had spoken and written a lot, her work has helped lots of parents with ASD.
    But really think about animals, esp horses as it seems to be a great link . A friend of mine is an audiologist of you have any other wuestions in that area
    Keep going the way you are it sounds great 🙂

    • Hi Jayne,
      Thank you for reading and for commenting. I hadn’t heard of that book or Noel Janis-Norton but I’ll be sure to look them up. We have fairly regular audiologists appointments but it as always good to know that there is another source of information out there.
      Thanks for the vote of confidence.

  6. Oh man – I remember that ‘day’ too! Big loves to you and your family. My little boy is now 8yo and does not present with any ASD symptoms anymore. We have done a TONNE of things to assist him and his development. Boy-Boy sounds like he has very similar skills and behaviours to my son. We tried BIG diet changes and no joke – he was talking after two weeks. Diet, supplements, ABA therapy, Chiro, Speech language therapy, play therapy, music therapy – we have done it all. I would be happy to assist you with any questions that you may have. My lil man is excelling at school, has lots of friends, is highly musical, loves soccer and swimming, but most of all – he loves life. I wish you all the best in your journey.

    • Hi Hollie,
      Wow! That is amazing about your lad, to be honest we are just processing everything at the moment, but I’m sure that in time we’ll be looking at different therapies to help him along. It is so great to hear how much of a lust for life your boy has! OPOne of the things which really worries me is how our little one will cope and enjoy life as he reaches adulthood so it is great to hear how much can change.
      Thanks for reading and getting in touch

  7. Wow! Boy-Boy is so lucky having loving dedicated parents. That alone is 80% of the battle won. One day at a time and don’t become consumed by his needs as children are so loving and adaptable. Both parents need to love each other fiercely and then all of your hard work for your son will fall into place. Just remenber to live life on this exciting but sometimes scary journey. You have written a great and honest piece and I wish your family all the best for the future.

    • Hi Marie,
      Thanks for taking the trouble to read my blog and for your encouragement. We are united as a whole family to deal with whatever challenges life sends our way, and I feel tremendously fortunate to be sharing my life with the four incredible people who make it up.
      Thanks again

  8. hi Ross. My son was formally diagnosed only about a year ago (he is now 18 and in his first year at university). But we always knew he was not the same as other kids, and I guess I didn’t want him to be diagnosed because I didn’t see how a diagnosis could help. I felt that evern if he did have ASD, we needed to treat him the same as our other kids.
    But now I think we were wrong. He needed to be treated differently, he couldn’t cope with family life, and I think we blew it. He now won’t talk to me. I love him desperately and I ache to think of the challenges he will face. But he has friends, he is at university, he has family members he can call.
    Sorry if this is gloomy. But really my point is that I think you are on the right track. You will learn what he needs, and how he needs to have things organised so he can cope. You will love him through good and bad, and with help I know you can get through and have a lovely and special young man at the other end.
    The other thing is about how to look after your other kids (if you have others!). Rules need to be fair, but they need to be different also, and my other kids struggled to understand why different kids had different rules and expectations. I don’t see any way around this.
    I hope this is some use. You are very welcome to get in touch if you want to talk more.

  9. I work with many children on the spectrum in schools and as your son progresses in life and school, there will be many challenges it’s true. But there are also many services and organisations to offer help and support. Educationally speaking Sue Larkey offers advice to parents and teachers. She has websites and resources available for later on. She is but one person that comes to mind. Autism nz has excellent resources and tips. My advice to you as an educator would be to always highlight you boy’s strengths which will be many, although maybe not always appreciated by ‘the system’. Always insist on the extra services you are entitled to – specialist teachers, resource teachers, possible funding etc. when looking at schools, consider and ask questions around how they would cater for your child’s specific needs ( they will become apparent ) Be a pushy parent! Lack of understanding and strategies in schools around ASD can be a problem so ask what they know and meet the teachers to let them know how your boy best learns. You will discover this as time goes on. There will be so much that you can do to assist your boys development. Try everything, what works for one child may be different for another. Your son sounds as though he may be gifted from the skills and thinking that he is presenting, also consider this as a factor and again find his particular strength, grow it and enable that to help his other skills. As people have already pointed out, there are many inspirational people out there on the spectrum. Find out about them and always let your son be influenced by these people when he is older. We all need role models to inspire us. I wish you and your family luck and know that this journey is going to be worthwhile.

    • Hi Linda.
      Thank you for reading and taking the time to write. We are currently trying to consider what school environment might suit him best, and it is so difficult to know. We will certainly bear your advice in mind, and is definitely good to hear an educator’s take on the situation.
      Thanks again

  10. Hey there, I knew my boy was special-in -a-good-way long before the word Asperger was even in our language. Have faith my friend, that son of mine is now a Lieutenant in our Navy, and the structure suits him perfectly.

    • Hi Audrey.
      It’s great to know that despite the challenges life throws at them, our children will find success.
      Thank you for taking the time to read, and write to me.

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