Day 1 – The Journey

See those eyes?  Those are the eyes of my son.  One of the joys of my life.  A piece of my heart.  A tear on my cheek.  A pep in my step.  A deep in my breath.

Those eyes belong to a boy, becoming a man who just happens to be on the autism spectrum.  The autism journey is unique to each person-thus the spectrum and challenge.

I started writing two years ago with the goal of publishing a book.  Well, I guess that could still be the goal – but the truth is there are too many hoops.  So many hoops to jump through.  This week I had four families contact me through friends.  This person wanted advice about exercise.  Another wanted advice about transitions.  Yet another on emotional meltdowns.  The final?  Just needed to cry.  The mom needed to just cry.  To say the words that are forbade, ‘I just wish he was normal.’  Gasp, go ahead, do it.  Any parent that has a child with any special needs hates those words and yet every once in awhile they creep through our lips.

That was the moment.  The moment that I decided this writing could not wait ANY LONGER.

Our story may be completely like yours, it may be a bit like yours,or it may be nothing like yours. Regardless – I hope the stories and ideas provide help, guidance, and solace to those whose lives have been affected by autism. Yes, I mean affected – it’s not a thing that happens.  It’s a thing that transforms an entire household and community of people.

My son is not disabled. He is differently abled. By my standards, perfectly abled. These mini-stories and resources are an ode to him. I chose 366 days as a theme because of leap year.  What a strange, unexplainable occurrence just like autism itself.  Leap year isn’t wrong, we still ‘count’ it.  But it’s just different. A child with autism isn’t wrong, just different. They have a little extra something…just like an extra day in the year.

I commit right now, one story or resource every day.  No matter how busy or tired I am…because this boy that is my heart, my tear, my pep, my breath – he deserves it.

He amazes me every day. Here are 365 more stories…

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17 thoughts on “Day 1 – The Journey

  1. Hey Nicki ! This is so impressive-so heartfelt! What a great way for you to not only sort out your own thoughts and feelings, but to help other parents understand the gifts they’ve been blessed with! So awesome-so You! A year from now you are going to look at this and smile (and be teary) and be SO glad you took time out of your crazy busy wonderful life to document your thoughts and feelings! Tucker is so fortunate to have a mother like you! And on those days that you don’t feel like he realizes that- just know that deep down he truly does! What a gift you are giving him and so many others! John’s cousin has a 6 year old (I think he’s about 6) son that was diagnosed with autism. She took a leave of absence from her job a couple years ago so she could be home with him and work with him. He’s really responded well. I am going to make her aware of your blog- i know she will certainly get alot out of it. Keep up the good work! Yay for YOU! Heidi Gosse xoxo

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    • Thanks Heidi – and you were there from the VERY beginning. YOUR family has such a HUGE spot in our hearts…no matter how many miles are in-between us!

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    • I am so anxious to reply to get the feel that i belong somewhere,because then maybe i can help my grandchild better…so please forgive me for the ‘blunders’ i might most pribably make.
      In all these 4 months, and the many,many articles, pages, blogs i have read i am still confused, not that i am not thankful for this high technology i get to live to enjoy!
      I am just still confused what condition truly my grandchild has. And how best to help him.
      He has been going to an OT for social skill competence program. My concern is : is it the right theraphy?
      You see, the issues raised by his former school (yes, his mother and i decided to transfer him for the coming next school year) seems not being met because the recommendation of the dev’t- pedia is not according to what they are concerned about.
      Money is not the only thing important here, I want not to waste anymore of this child’s time…and happiness…

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      • I can understand – time and happiness is the WORST thing to waste. I think you’ll learn and develop a stronger understanding as you keep reading. If you see some of your grandson in my posts – then, hopefully, you will have more of an answer. I can tell you that in general, OT folks are GREAT people who will advocate for the child!

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  4. Thank you. My husband sent me your article about him being alone. I also, knew this day would come with our son, and it has. We were left sad and slightly angry that he is “alone” at lunchtime. These posts are helping. I will start at day one and catch up to you.

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    • Sarah,
      I know – it’s hard. One day at a time…and know that you are not alone. This parenting of ASD is a perilous world – I honestly believe that the “I’m your parent not your friend” adage doesn’t work with these children. We are most likely their best friend…they need us to be. Please reach out if you have any questions or think I can help you in some way. Can you talk with the school counselor to ask another student to be his lunch buddy? WE’ve done that – and it’s worked well. Let me know if you need information on how to make that work…
      Nikki

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  5. Thank you for the nice and generous reply.
    We have a message into his teacher wanting to get her thoughts. Luckily the teachers at his school have been nothing by helpful. They all seem to care about him so much, which is a blessing. We also reached out to his previous speech therapist who already contacted us with so many helpful thoughts and ideas.
    It’s nice to read and hear from a voice that sounds like my own. You say things that are in my heart so much more eloquently than me, but closest to my own voice. I, like you, when we got the diagnosis, I think I read every online article and every book my library had, but none felt just right. So thank you for sharing your stories and experiences. I hope it reaches more moms out there. Know you have helped one already. Very much.

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    • That warms my heart – feel free to share the blog with all of the people that surround your son. His ‘community’ needs to understand him – that is paramount. Don’t give up and don’t stop talking about him…no matter how annoying you feel like you are being. Thank you for your kind words! I’ll look forward to hearing more about him 😀

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  6. Pingback: Day #234 – Springtime in Spectrumland | 366 Days of Autism

  7. Hi. May I, too call you Nicki?
    You are so right, as I continue reading better understanding is developing. Like the one with the SOCKS. And I don’t feel so alone anymore tho still anxious.
    Ian,my grandchild, is turning 9yo on may11.
    We are giving him a swimming birthday celebration on Saturday.
    Life, family occassions has been dull since his first assessment, at least for me. But when his mom said Ian wants to have a swimming party, and he went with his mom to go shopping and bought a surf like something, boy I felt so full of good tidings!! You see, he never was interested in celebrating his birthday, never want to go with his mom shopping, never really knew what he likes…but now…really calls for a celebration hah?!
    But last night, as he and I were getting ready for bed (mom has a night job), I started telling him how excited I was about Saturday and he got so mad saying he doesn’t really want it and he was just being forced into it! It got so that he raised his feet I thought he was going to kick me! I tried to pacify him, he calmed down enough to lay back down but wouldn’t let me touch him.
    I don’t know what to make of it. Or what to say to him when he wakes up.’

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    • You sure can! I am so glad the blog is helping you!!! Tucker’s birthday is May 10!!!! He will be 13…a teenager. How in the world did that happen!?!?!? I just hope mom isn’t trying to force a social life on Ian. I made the mistake of trying to do that because I thought he needed friends. It turns out, he was just fine. Me wanting him to have friends was MY issue…not his. He was perfectly happy just being himself. The great thing is that he DIDN’T kick you….he calmed himself. Let him sleep on it – nighttime is ALWAYS really hard. Think of it like this…when we wake our brains are well-rested and haven’t had to learn and/or do much of anything. Throughout the day our brain takes in more and more and by the end of the day we need to sleep to rest our body (and brain). Because it was nighttime he may just have been overwhelmed and couldn’t find the words to communicate. Morning will *hopefully* bring a fresh (and calmer) perspective.

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      • I felt like my heart stopped beating finding you have replied immediately. You see, I expect Ian will be waking up soon and that means I won’t be able to use this iPad again till tommorow morning,when I am so,so looking forward to reading from you. You made me laugh reading ” the great thing is that he didn’t kick you”.
        What a coincidence him and tucker has almost the same birthday! And oh them being teenagers!! I remember very well how lonely and painful teenage life was for me. Several times already I wonder how it would be like for them, my grandsons. And when I learned Ian has difficulties, I worried even more.
        Guess it’s time for us to really learn and master the arts of living with this condition, ha? 😉
        Time is up, the precious child is awake! ( they all are precious, Ian just need me more.)
        And yes, he’s bright and fresh!! With a gem of a kiss on my cheeck!!! Oh my I’m ready to die it’s the 1st !!! Byeee

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      • Always remember the ‘fresh brain is the best brain.’ Trying to have conversations or make progress in the evening hours is often impossible. It’s like fighting against the waves…

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