Kelly’s Autism Story
If you are reading this I am so thankful that you decided to read ‘Kelly’s Autism Story‘, and wanted you to maybe have a look at a little part of our world and the joys of raising a child with non-verbal autism.
I was asked to write a little piece on the reality of raising a child with autism, who is non-verbal and has learning challenges and struggles to communicate. 101 things went through my mind I am quite a private person and shy. I live quite an isolated life so I have been hesitant but I thought maybe to share a little bit of our journey might just enlighten and lift those parents who are only starting out on this path.
From the point of diagnosis prior we had so many issues when my son was born, he never slept, he was sick always and couldn’t keep any food down. He used to rock his little cradle so hard legs up and down from 2 weeks old I could see he was in pain. Yet no doctor or health visitor could help, it was just put down to his milk doesn’t agree with him or he was a colic baby or possibly silent reflux. I used to think this doesn’t feel like motherhood, the joys of watching other mum’s as months went by attempting to go to baby groups or toddler groups and feeling so very alone.
When he was sick or hysterical I could feel myself slowly wanting to be invisible as I thought others were judging my skills as a parent but had hoped this is normal it will get better.
Kick in sleep deprivation, oh boy. This was the worst. Struggling so much and nothing is improving…but then I see him smile and giggle and such sparkle from his beautiful big eyes I know he’s happy but still he has stomach pain, he won’t crawl, he won’t sit up he is now nearly 1, I hear his first word mama, dada, this becomes frequent and he takes his first steps after his 1st birthday and starts looking when we call his name all in a space of a week. I am amazed and so delighted I think my beautiful boy is getting better and I have so much hope I think the sleep will improve, he won’t be sick every time he will eat proper foods soon. Slowly I feel my bond grow with my child I feel so proud and feel such a good mummy I’m trying so hard, so off we go to our first health visitor appointment at 15 months he proudly walks in very unbalanced but I think, hey he’ll get there.
I will never forget this day or this appointment I grabbed my perfect little bundle and sobbed in the car I got home only to be rang by the GP who was worried about my son and his progression. The health visitor wrote such a detailed report and contacted her straight away of her concerns it just floored me – he was perfect to me, perfect. My heart broke that day for him but I still didn’t believe them. The overwhelming fear set in every letter through the door now for all these new referrals and appointments for the weeks ahead I was so petrified of what lay ahead and no one to guide or advise us or tell us all will be okay.
A few weeks went by, and I noticed no more mama no more dada, his balance became worse he fell so easily, he stopped looking at books and stopped responding to his name, it was like my little boy was disappearing before my very eyes into a world I knew nothing about. He eventually stopped eating any blended foods and just wanted milk. For nights and months I googled looking for what is going on, he started to get his hearing tested, nope his hearing is fine, then he went for physio, speech and occupational health all raising their concerns he now was traumatised every appointment we would take him to he squealed, he vomited, he was 18 months and he had anxiety how can my baby have anxiety he is far too young? Slowly time set in the tiring routine hospital appointments, block therapies they start to mention global developmental delay ? Then sensory processing disorder, or autism. I didn’t know a lot about autism so started to research for months, and finally regressive autism started to click with me all I read seemed very familiar to my boy he was regressing immensely. We persevered, both in full-time work, no sleep for 3 years we were just in auto pilot. Then the day of being diagnosed came. He was 3. I thought at least if we get the diagnosis it will get better he will get help he’ll be fine. The diagnosis came, I got two letters from two autism charities and that was it.
This is Kelly’s Autism Story. We all have a story to share, let’s hear it!
No intervention, actually from the point of diagnosis the only real support was his school and that was limited. So the neverending journey begins of his education statement, IEP’s, more medical appointments, more referrals yet very limited therapy and help. Slowly I wrote to so many people MLA’s, Councillors, Doctors, Therapists asking for follow up therapies this system was failing him before I seen how autism would impact him. It took his first words, it took his name, it took my son to a world I couldn’t reach yet longed for. My heart broke, tired and drained emotionally and mentally, our whole family were. The perfect little boy and no one knew how to help him. To feel helpless is the worst feeling ever. We were told he wouldn’t progress much and he had severe learning difficulties on top of his autism he had gut health issues and restrictive eating. All these areas no one tells you about your forced to figure all out yourself. My husband took unwell, I remember I had no one that could help look after my son as I only understood his ways. It was the hardest point at this stage. I isolated myself I had no choice, work was my outlet and that was it all the things I enjoyed going out with friends, us going for meals as a family never has happened, holidays we have never been on one, very little visitors visit us a they feel it might annoy my son as he would have meltdowns, another part of the joyous part of autism. I disliked autism, I disliked the way it made my child suffer.
He’s now coming 5 nothing much has changed, his health deteriorates as he eats very little. It takes two people to visit a GP with him it’s so hard he is traumatised every time we leave, they can’t look down his throat as he won’t open his mouth, tonsillitis they assume every time until he became so ill we ended up in A&E multiple times. He’s away from his world and doesn’t understand why so many are observing him.
His school couldn’t keep him as he was constantly being sick and his little face couldn’t tell me why.
This was a turning point for me I realised I was on my own I had to fight this system or not, I literally would do anything for my son, my family, but I realised I had to stop thinking negative even on the horrendous long sleep deprivation days and turn my strength to hope, faith and optimism.
No ones knows the future, if anything this year has taught us that, but many parents with children with additional and complex needs already lead such an isolated life long before this year changed everyones reality. He is now 6, we decide to move him to a special school he starts to become happier, he starts to eat different foods, I slowly see the sparkle in his eyes return, his sleep improves. What’s changed? What is it?
To be honest the one thing that changed was I opened up to others with children similar to my son, I began to heal from traumatic years we had went through in his life and I just adored my child for who he was, I felt lighter, I felt like if I can help others learn from my experiences I am also helping my son and his future. He is now 7 and we are living through a pandemic I feared he was making progress and now no school, the change in routine it will be so very hard.
To be honest he loves home he has no friends, but we are his friends, he can’t communicate no speech therapist can figure him out, but he communicates in his own way, he has empathy, he has so much fun in his own way, he has very few meltdowns, he loves to see people, he shows you the biggest smile daily with his struggles everyday he is smiling pain or no pain, he tries different foods now as we work with him, he hugs me everyday and gives us kisses a million a day if he could, he shows me love, yes he’s stubborn but he can now try to brush his teeth, he shows me how I can help others, he shows me how to heal, he shows me to connect and make friendships from people I have never met, he has taught me not to be judgemental of others, and to be kinder and to have extreme patience. You see his milestones may not be educational ones but life building ones from clothing to feeding himself to communicating when he is older, my hope is that he has a happy life. The pandemic has been a struggle for so many carers, myself included, lack of support from services, respite, I could go on and the reality is it’s so not easy but I wanted to maybe just share some tiny positives through a very tough year.
So my realisation while raising my son is have HOPE, have FAITH, have JOY, have LOVE and always believe your child can achieve so much – because Non-Verbal Austism gave me the best teacher in the world something.
I would never have learnt from any school and he is only 7, he taught me to advocate, he taught me my voice is a true gift from above, he taught me to be so strong and to never never give up! my promise to him is I won’t ever give up on him and neither will you for your loved one. I have to mention my amazing parents who have done so much for us as a family, I could not have coped without these two people who my son adores. They have enabled me to work, they have given my husband and myself many breaks, so we could gather ourselves together. Every day I thank God I have the most amazing parents. I know not all of you will have this support, so I do realise how fortunate I am.
Our journeys are all different, all unique but oh so special as much as they face so many challenges they are so inspirational and brave…I’m blessed to have him.
Much love to you and thank you for reading this little part of our lives.
Thank you to Meta, a beautiful person who gave me the opportunity to share a little bit of what I know about autism and what it teaches me everyday.
Written by Kelly
Reposted with permission from Meta Auden of Spectra Sensory now owned by Helen Clawson.