I could tell from the Health Visitor’s face. We were at home and she was listening earnestly to me express all of my concerns and ask her a million questions. She was guarded with her replies. I knew all the answers anyway, i’d spent hours upon hours trawling through Google, but I didn’t tell her that. I was hoping she’d tell me something different; i was just being dramatic, just being a paranoid mum! She didn’t though. She made notes, didn’t say much, but she looked… concerned. It was there in her eyes. She said she would arrange for us to see the Paediatrician as soon as possible. That i should try not to worry just yet. Ha good one!
We decided then to get a private assessment with an autism specialist. I couldn’t bear waiting around – if this is what we suspected, i needed to know. The sleepless nights, the anxiety, the fear – what’s the point hanging around and working myself into a complete state. We found a specialist in Manchester and made the appointment for her to come to our house. She was excellent. She was unable to ‘officially’ diagnose anything but she carried out a thorough assessment, the conclusion being that Franklin was presenting significant difficulties across the 3 central symptoms of ASD (the triad of impairments). His strong tendency towards repetitive behaviour and his sensory sensitivity were also significant. CRACK!!! my heart broke.
I didn’t, couldn’t, talk about it with anyone other than my husband at this time. I knew if i tried to i’d cry. I wasn’t ready. I was petrified and ridiculously emotional with it.
The Paediatrician appointment came shortly after. We took Franklin in to meet the doctor which was a challenge in itself. Franklin screamed for the first half an hour of the appointment. Luckily my husband was with me to help placate/restrain Franklin while i spoke to the Paediatrician. Once he calmed down she was able to do her thing. It was a very thorough assessment and we had to answer numerous questions. We asked her to be open with us, begged her to. She confirmed that he was evidencing a significant amount of the symptoms all pointing towards Autism. There it was again… the A word.
She would refer Franklin straightaway for Portage home visiting service, 1 to 1 support in Nursery by the Early Years Support Team and Speech & Language therapy. She would see us again in a few weeks. I was glad they were getting on with it, or was this a double edged sword? I started fretting that they think he’s severe.
The Paediatrician explained Autism isn’t something she would usually highlight at a first appointment, but she felt it was necessary on this occasion to state ‘suspected Autism Spectrum Disorder’ in her report of today, to make the other professionals who are and will be involved going forward with Franklin aware.
I was beyond horrified when the letter arrived, seeing it in writing was another level.
After further visits and assessments with the Paediatrician, as well as numerous sessions with Portage, Speech and Language etc, the Paediatrician confirmed now was an appropriate time for Franklin to be referred to a Panel for an official diagnosis. This would require all the professionals involved with Franklin (herself as his Paediatrician, Speech & Language, Portage, Early Years Advisory team, nursery etc) submitting reports outlining their investigations, observations and analysis, and the Panel would make a final decision.
We received Franklin’s official diagnosis on 15th March 2017, the week before his 3rd birthday. I was sent an appointment with the Paediatrician, but this time they didn’t need to see Franklin. I braced myself.
I didn’t sob in her office, I held it together, just about, until i got to the car and rang my hubby. Then the floodgates opened.
It took me a couple of weeks to close them, the enormity of it completely overwhelmed me. Scared the crap out of me to be honest. A landslide of tears, trepidation and several bottles of wine later, i knew i had to (wo)man up. This isn’t going to disappear, ever, so i need to throw myself into it. The real hard work starts here. I vowed to work my backside off to give Franklin every chance of being the best Franklin he can possibly be. Autism is a part of him, a part of all of us now, but it doesn’t have to define him.
It’s not the end of the world, just the beginning of a new one.
Well said Jo. Both you and Steve have handled Franklin’s diagnosis with amazing courage and conviction. You have fought to get him the best in support and despite your own personal doubts..you are both fantastic and could not do anymore. Both Franklin and Tabitha are very lucky to have you as parents and we are very proud of you both and will always be here if you need us xx
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You are an amazing mum and absolutely incredible for both your children in here to support you and your family.
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No one could and does give this wonderful boy any more than you do. He’s so blessed to be part of your amazing family and we’re all blessed to love him so much. I hope this (wonderfully written) blog reaches out and helps many other families. Love to you all xx
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So proud of you Jo, Franklin is so lucky to have you and Steve as his parents. I hope your journey, hard work and experience helps others in the same position. ❤️💙
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I love the fact that you have accepted Franklin as he is and aren’t trying but to fit him into a box that isn’t him. For Franklin, having such accepting parents will help him achieve everything he wants to. He is very lucky to have you as parents.
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Jo you are an amazing mum and Franklin and Tabitha are so lucky to have you and Steve for their parents , I’m sure your experiences and knowledge that you write about in this blog will help many other parents in the same situation. I’m so glad our paths crossed 💙xx
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Both of our sons are autistic and I’ve been through the’why them/us’ questions endlessly over the years but at the ages of 26 and 23 now I couldn’t be more proud of the men they have become, they are caring, compassionate, wonderful and loving and a joy to us. They are probably always going to be with us at home and sometimes I feel like they are missing out on the experience of life that I’ve had but they are happy, safe and know that they are loved so I hope that their lives are as rich as they want them to be. They are amazing and I love them so much ♥️
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I’m so proud of you. All you have gone through, emotionally,and all your hard work. Your experience will help others who read this. Franklin has changed our lives for the better. Franklin & Tabitha are lucky to have parents like you & Steve xx❤
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You write with incredible openness Jo. Sounds like you and Steve give endlessly to both your kids. Tabitha is bubbling with energy and enthusiasm. She must get it from you! I look forward to our new friendship and don’t forget some ‘you time’. Xx
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Thanks for sharing this Jo. You and Steve are such great parents.
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I have read this blog so many times with such admiration for you both as parents. I think this is brilliant awareness, insight and education for us who know so little. My son Herbie is in yr 6 at Franklin’s school and talks about Franklin with his friends when they talk about their buddies. The best thing about it all is that they just chat about Franklin in the same way as they chat about every other little boy and girl. They are just the kids in reception…no discrimination, no pre-conceived ideas or judgements. Long may this last – it can only help in educating everyone x
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Hi, Jo.
I read your blog with great interest and sincere empathy. I, myself, went through most of the emotions you describe and like you, I vowed never to give up. My son, Sam, did not speak until he was 6/7, he just watched Thomas the Tank videos and bit people. He is now a Teaching Assistant level 3, working at the Special School that he attended. He played badminton for Lancashire when he was 16. My message to you is “Never give up and fill his life with fun”. I found that Sam reacted extremely positively to “gooning and stupid antics” I wish you all the luck, I know you will succeed as you are determined. Never give up. If you need any advice, drop me an email. …… Dave
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