The Start of the Long Road to Acceptance

Today, I watched my four year old Florence at one of her school performances. As I stood watching her dance and sing – coyly beaming at me every now and then – I felt that old familiar feeling rise. It’s bittersweet. See as I watch my girl perform I cannot help think of my son.

Connor is three. He was diagnosed just before his third birthday with ASC. Connor has the type of autism that you cannot miss. You know the loud, in your face and challenging type. Introverted he ain’t!

He’s a beautiful boy – gregarious and hilarious in equal measure…and he has the most loving nature. He also has autism – and his autism impacts him. A lot.

So, when I watch my girl sing and dance with her friends, I can’t help but try and imagine Connor doing the same. And try as I might, I know he cannot. Maybe one day, but not right now. No way. That hurts.

It hurts despite a lot of things. It hurts despite the fact I have my daughter Florence, who is able to do all the normal things us neurotypical bunch do. She will likely follow the usual trajectory of life- school, secondary school and then job or studies. Maybe marriage, maybe a baby? I can experience all of this with her. But does that take the sting away from not having this with my son? No, it absolutely does not.

It also hurts despite the fact I have had many moments like this already. Many “aha” moments, where I come to realise just how much my son’s autism affects him – and us. I have had several moments like this.

My one defining moment of coming to see my son really had autism (like reaaaaally) was back when he was just around 22 months old. It had been brought to my attention by family that my son may be progressing differently, and deep down I had suspected so. My husband and I had even mentioned Autism to one another when Connor was just a year old. We quickly brushed it off. Denial is real.

I look back now and I see how impacted my son was at this tender age. How could we not know? Despite getting a diagnosis so early, and all sort of therapies and help in place – I’ll always wonder could have done something sooner.

So, the defining day for us was a visit to Special Needs playgroup. I wanted to go and get some support with my son’s self-injurious behaviours. He was biting his arm a lot and having severe meltdowns. My mother-in-law and I went along to the group with Connor, with a mix of trepidition and hope for something or someone to help us. It was such a dark and scary time for all of us.

When I went into the small room, full of fun toys and sensory activities, I felt oddly sick. We didn’t belong here. I felt silly bringing my boy. This was all a huge overreaction. I distinctly recall feeling embarrassed! Like everyone would be looking at us and laughing at how over- the-top we were for bringing Con along. He obviously didn’t need to be here, did he?

I remember telling the group coordinator how silly I felt. How he can actually be more challenging than he appears and how I was maybe overreacting? Was I? This was 5 minutes into the group.

By 15 minutes we were already in panic mode with Con having full blown meltdowns, bellowing, biting and throwing. By half an hour I was in the bathroom sobbing that my little boy had been unable to cope…once again. He was suffering and had even upsets others too due to his throwing.

Even at a Special Needs groups, he couldn’t cope. I was in shock.

By the end of the group I remember realising that my son really did have autism. Connor did belong at that group. Connor had actually stood out amongst his peers at that special needs group, as his behaviours were so challenging and his stimming was so loud.

I can laugh now. Even in an additional needs group, my son stood out the most due to his Autism.

Something changed in me that day, for the better. I saw reality and I saw my boy in all his glory. It was the start of the long road to acceptance… one I am still on now. I’ll never have such a moment like that again. It was real and powerful.

I’m grateful now as it gave us the courage we needed to get my son the help he needed. Because of this he has come on so very much, he is doing well and I truly couldn’t be prouder of him and the little human he is.

Written by, Mandi Coup-Gibbons

Bio: My name is Mandi Coup-Gibbons and I am 30. I live with my husband and our two kids, Florence(4) and Connor(3)

I currently work with adults with learning disabilities and challenging behaviour. We live by the sea in the UK, which we love. I admire Kate and her honesty. I’m privileged to share this on her amazing and inspiring blog. Thank you Kate for all you do.

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Finding Cooper’s Voice is a safe, humorous, caring and honest place where you can celebrate the unique challenges of parenting a special needs child. Because you’re never alone in the struggles you face. And once you find your people, your allies, your village….all the challenges and struggles will seem just a little bit easier. Welcome to our journey. You can also follow us on Facebook and subscribe to our newsletter.

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  • Sheila

    February 27, 2018 at 11:16 pm
    Reply

    Thank you for making your blog. I have two girls, 8 and 4. My 8 year old has severe autism and is nonverbal. I relate […] Read MoreThank you for making your blog. I have two girls, 8 and 4. My 8 year old has severe autism and is nonverbal. I relate to a lot of your writing. I also get sad when I see pictures of my daughter as a toddler, even now. I made huge baby books for her as she's my oldest and I've even thought about burning it, although I won't in the hopes that she might appreciate them someday. Read Less

  • Hope

    February 27, 2018 at 11:44 pm
    Reply

    I listen to your story you shared and want you to never think you are doing anything wrong in raising your handsome son. Each of […] Read MoreI listen to your story you shared and want you to never think you are doing anything wrong in raising your handsome son. Each of our experiences in raising our children are different and we do our best. I think you are a remarkable parent. Just by recording your message it has helped to educate so many parents about autism. Exposure is what is needed so people see and learn to appreciate and show respect for our children, teen agers and adults who hold a valuable place in the world. I will continue to pray for your son and for your family as well. I will thank God everyday that He will bring you through another challenge and through them you will grow and strengthen yourself for another day. I ask God now to perform a miracle in your son so that he will be able to lead a normal life. Continual prays and love. Amen Read Less

  • Amy Smythe

    February 28, 2018 at 1:11 am
    Reply

    I read your story on facebook and had to read more and see more.of Cooper. I teach K-1 special education after 4 years of […] Read MoreI read your story on facebook and had to read more and see more.of Cooper. I teach K-1 special education after 4 years of kinder. I have to tell.you that I had the blessing of having a beautiful young lady in my class my last year in Kinder that was on the spectrum and only spoke a few words. She capture my heart and taught me so much about autism, but more importantly about life. She taught me how what is normal to one is not to another, how simple things should not be taken for granted, how one person can make such a difference in a life, and best of all - how to love. I never put so much thought into individuality and striving to meet the needs of every child and every say til I met her. She captivated my soul pretty much and made.me change to pursue my licensure in special education because I wanted to work with her and children with such qualtities and inspiration. Cooper is one of those children that I see in your pictures with that captivating smile and the purity in his eyes. He belongs in this world and has plenty to offer even if we don't know what that will be yet. When I saw the video and tears in your eyes I badly wanted to tell you to remember the new TV series with the doctor. I don't.know but can imagine how tires you get, your worries and.pain, but hearing you and seeing you with your emotions shows you are the best mommy for Cooper. The happiness you and Cooper glow with in your pics is breath taking. Never give up and use supports when you need to. For those that don't understand or whisper, well shame on them for not recognizing.his individuality and needs nor understanding becauase they should be offering support or a smile and not a stare. You and Cooper and your family touched my heart and will be on my mind and in my heart for days to come. I look forward to seeing more great days and accomplishments for you guys. ❤ Read Less

  • Michelle

    February 28, 2018 at 10:21 am
    Reply

    Thank you for your truth and pure emotional, raw honesty.my daughter has cerebral palsey, , seizures, non verbal, mental retardation..she is in diapers and can […] Read MoreThank you for your truth and pure emotional, raw honesty.my daughter has cerebral palsey, , seizures, non verbal, mental retardation..she is in diapers and can not feed herself. A few years back the doctors said she also has tendencies of autism on the low end of the spectrum. The road we are all on is difficult yet breathtaking.. rough but groundbreaking.. most people I meet either give me the pity look, or the ignoring look..I'm not sure what is worst. So to have someone else to KNOW... Well, it makes me feel o.k. makes me realize that I'm not a bad mom. That actually..I'm pretty darn good at it. Even though I'm afraid often... I do it. I keep moving forward...hoping I'm not gonna take that step off the cliff. So yes.. maybe we don't get to leap and bound..but you know.. I'm o.k. With the nice, enjoyable walk in the park anyway! Read Less

  • Sharon

    February 28, 2018 at 12:15 pm
    Reply

    Thank you for your honesty. Parenting a special needs child is more difficult than anyone knows, unless you have been there, Our daughter […] Read MoreThank you for your honesty. Parenting a special needs child is more difficult than anyone knows, unless you have been there, Our daughter is 38 years old, severe and profoundiy mentally handicapped with cerebral palsy and seizures, We love her and enjoy her more than we can explain; however, our lives are severely restricted by Jamie’s schedule. I’m not complaining; I’m simply stating fact. We are now retired; we take care of Jamie. There are no quick weekend trips or vacations, There is very little spontaneity in doing things. This is our life. I’m usually good with all of it; but, occasionally, I look to the rest of our retiree friends and their ability to do whatever whenever and I could feel deprived. I am grateful for Jamie and her impact on our lives. I feel truly blessed. It is important for me to keep my eyes on the gratitude and the blessings and not get sidetracked by the what-ifs. I have always said the with a child with a disability you have to take it one day at a time and not be consumed by what I do not know about the future. Some way, some time what is happening to me today may allow me to help someone in the future. Read Less

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Finding Cooper's Voice is a safe, humorous, caring and honest place where you can celebrate the unique challenges of parenting a special needs child. Because you're never alone in the struggles you face. And once you find your people, your allies, your village....all the challenges and struggles will seem just a little bit easier. Welcome to my page!

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When my son was first diagnosed with autism no one was talking about it. Autism was hidden. I vow to change that.
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