3 years on the spectrum!

December marks our three-year anniversary with a diagnosis of Autism.

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Is this a celebration?

Well, I can’t say in good faith that I’m 100% thrilled with it, No. I can look back to 3 years ago and say that we have come a long way as a family, as parents of a child with special needs and that our son has really blossomed and embraced his ASD and made the most out of it.

3 years ago… I remember very vividly entering the Psychologists office with my husband and my enormous 9 month pregnant belly and sliding into the uncomfortable armchair full of trepidation as I waited to hear the words I most certainly knew were coming but that I prayed with all my being that would be something other than what they were. I remember the awful look in the very kind and sensitive Dr’s eyes as she began to speak. I could see that she didn’t want to be telling us what she had to say and deep down what we hoped to avoid.

There were so many times before this moment that I asked “does he have autism?” to myself.

I researched. I reviewed. I quizzed myself with on-line self-help sites and I never thought for certain that my son qualified. I found a million ‘maybe’ diagnosis until the lines blurred and I was just too tired to ask anymore questions and I was just too exhausted to try to find a better outcome in the diagnosis.

With 2 months until Lincolns 5th birthday we waked out into the darkness of a winter’s night to face a future that was now so very different from we dreamed of, full of unknown and uncertainty and fear.

Running my hands over my unborn child I thought of the 3 other little ones I had at home and wondered if I could do it. If I could be the parent I needed to be, if we could as a family rise above this set back and still persevere. While I boasted to my husband that we could do it, it would be ok and all the other things people murmur in the darkness to each other because that is what needs to be done to at least make yourself believe you might be able to, my mind raced and my heart broke, over and over, with each block we passed as we travelled home.

I remember how tightly I hugged my son when we arrived back home. It was as though I had lost him and only just found him after a long and difficult search. And I suppose I had.

This was Lincoln just after I had him. He stole my heart that quickly.

This was Lincoln just after I had him. He stole my heart that quickly.

Now, 3 years later, I know that all the panic and doubt was just a reaction and the lies we tell ourselves to push ourselves forward in action were really unrealized truths.

I will not say that those three years were without pain or cost. That would be untrue and it would make our gains less valuable.

I have paid the price emotionally to gain the security of my son being happy and healthy and striving and excelling. It cost me a lot of things I never imagined I may have to sacrifice and I’m pretty sure if I was told how very much it would take from me I might have wanted to say no (if a person really had the choice)

Any parents who are in the early days of diagnosis, I implore you, give yourself time.

Don’t make an hasty decisions. Do not give up on yourself, your friends and family, your partner and spouse. Ugly things happen when progress is being made. People morph into things they really are not. It takes struggle and determination to rise above it all and find success. It is easy to let your emotions guide you to places you do not wish to go. Give yourself time to grieve and time to heal, time to learn, to cope and THEN to soar above it and learn to live your life as it is. You will. And you will be richer for it.

I often write about how far LIncoln has come and how great he is doing in school. How he is learning to find his way so I don’t need to show you with time and love can come results.

I will share with you on the anniversary of our diagnosis how today went.

Today, my son went to a birthday party of a girl in his grade 2 class.

I attended, as one of us normally do as we cannot leave our son alone in these social settings yet where his behavior is still unpredictable and it is unfair to expect other parents to be able to handle his differences.

It was a princess themed party at a really fun play place with climbing walls, Nerf ball guns, tunnels and slides and lots of classmates.

Lincoln ran off to play with the kids and I found a bench off to the side to sit and watch to make sure he behaved as expected and didn’t do anything inappropriate. Sometimes in new situations anxiety takes over and his behaviors reflect it.

after 1/2 hr I was pretty sure that everything was going to be fine and I started to zone out a little. Then, I heard Lincoln’s name being shouted and I froze.

I looked over to where the cutest girl of the bunch was giggling past me chasing my beautiful son along the path, up the stairs and out of eye sight.

For the next 20 minutes I watched as the girl followed him as a puppy, often stopping to get his attention and bringing him with her from activity to activity. At dinner time the two sat side by side and from across the room I watched as Lincoln turned to face her, making very good eye contact as the chatted back and forth. A CONVERSATION!

Ok, for those parents out there with neurotypical children that are thinking “SO?” let me fill you in on an Autism fact.

Kids with ASD have a really, really difficult time making eye contact at all AND many of those kids do not carry on conversations. Talking for a lot of ASD kids is one of three things: 1) being unable to talk at all. 2) talking but in small, simple sentences without a ‘back and forth’ exchange or 3) being told all about something that interests your child (the professor or encyclopedia) without a desire for your input OR only wanting your input where information is wanted. Basically, being used as a source of knowledge like a computer or book. Now, I’m not saying that conversations don’t happen with kids with autism but they are different, and you feel it, trust me. Socializing is very hard for autistic kids.

I admit it, I welled up.

Seeing this young girl look at my son with ga ga eyes (ok, the innocent ones before girls actually know they are fond of boys) made me feel a million feet tall. My son was just having an experience like a typical kid and he was a cute boy a little girl wanted to play with. That was it. kiss

The rest of the party went off without an issue and when the establishment ‘supervisor’ had to go get the birthday girls parents because of someones behavior I was relieved to see my son was still in the play structure loading nerf balls into the gun and giggling with his buddies.

3 years seems a life time ago but it went by in a blink of an eye.

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I wish you all the successes we have had in just a short time and I hope to continue down this path as a family strong and determined to embrace diagnosis and not let it prevent a life full of happiness, achievement and contentment.

My motto for 2013 will be “THREE YEARS STRONG”

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7 thoughts on “3 years on the spectrum!

  1. You just broke my heart and have me enormous hope. We are just entering testing. Our son has already been diagnosed with Sensory Integration Disorder, and his pediatrician told us last week that she would not bet against him bring in the spectrum. I already struggle with the looks and whispers and sometimes it hurts my heart and scares me to death. My husband loses patience so easily and I know it breaks our little one’s heart. Thank you for giving me hope.

    • Danielle, it gets easier, I swear it does.
      It takes getting use to what you are dealing with, learning what triggers panic, fear and upset and then how to make things better. Be kind to each other because it will be so easy to be angry and resentful but it won’t be atr each other, it is at the situation and once you learn to work with it all will work itself out 🙂
      Take the time to allow yourself the grieving for the typical child you thought you’d have and then enjoy your unique son for the extra wonderfulness he will give you…because however unlikely that sounds it is really true.

      Remember there are LOTS of parents just like you out there and you always have a friend 🙂

  2. My son’s first appointment with the pediatrician is not until late February but I already know deep down in my heart what the outcome will be. Up until he started to talk we all thought he was absolutely fine. A wonderful, extremely energetic ,loving ball of fun. It was only after a visit to the speech therapist that the ASD question reared its ugly head and all his little quirks began to mean something else. Love is blind I suppose.

  3. Sorry I clicked before I’d finished !

    I have been torturing myself with looking up anything and everything to do with autism since early November, it’s driving my husband nuts! and I came across your blog and for the first time I’ve felt some comfort in what I’ve read so thank you. This particular post has had me in tears because all I would like us for my son to have little conversations with little people and be accepted for who he is and this has given me hope.

    My little one is 3 in April so I’m hoping that early intervention will help him lots. I’m now pregnant again (gulp) and terrified of what the future holds but what can I do except accept and move on and become the best mum I can.possibly be for my little angel.

    Thanks again
    M

    • He will get there, give him time. You will be amazed at all the changes from 3-7 and you will be so proud to see the progress. At 4 I was so concerned with how my son would make it…now, I know he’ll be just fine.
      Other children ofte nhelp, I had 3 after Lincoln and I swear it helped him learn to communicate.
      Good luck and blessings to you all.

      Love and patience really do perserve. I’m always here if you have questions or just want to vent. Parents need to be gentle on themselves too.

      Good luck with your pregnancy!

      A

  4. Wonderful to read. Thank you. We have 4 boys, our second son, now 5 is on the spectrum. He is making great strides and we hold out much hope for him in the future. I do worry about my other two younger boys, 2 and 10 months, the possibility that they may also be on the spectrum scares me. My heart overflows with love for all my boys but it also breaks for the challenges my son faces. Reading your story continues to give hope for a bright future for him.

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