This blog has been specifically written for the charity ‘Family Fund’
First off, chill out! I know that’s easier said then done and your mind is most probably on over load – ‘It’s my fault’, ‘I need to get help’, ‘why’s this happened to my child’, ‘God’s punishing me’, it’s because of…
NONE of this is your fault or your childs!
I’m going to speak to you from the heart about how I felt when myself and my daughter (aged 1 at the time) received a diagnosis of ASD (Autistic Spectrum Disorder) for my son (aged 2 at the time) in 2015. I’m in no way a professional and everything I write are my own thoughts.
I used to take Riley and Summer to a Thursday afternoon stay & play group at a local church when Riley was just around 15 months. Riley used to walk around the room touching the walls with his fingers and pacing up and down the corridor. Riley used to put everything in his mouth, meaning his bib/ top was constantly wet. I distinctly remember one day a lady I’d never met before asked me, ‘when did you find out your son was Autistic?’ In which I replied ‘he’s not Autisitc’ It was in that very moment she’d planted a seed.
I remeber speaking to friends and asking them for their opinions and they would say to me ‘boys are a little lazy and tend not to hit milestones as quickly as girls’ or they’d try and reassure me by saying ‘don’t worry Riley will get there when he’s ready’
Whether this lady triggered my inner mother senses or they’d have come to me naturally. I started to notice changes in Riley. He wouldn’t socialise, avoided eye contact, started lining up his toys and began to flap his arms (like a bird)
Like a lot of people I’d heard the word ‘Autism’ but lacked any kind of knowlegde about this. I hugely regret not looking into Autism the moment the lady mentioned this about Riley, perhaps I could have gotten him help sooner. I think I was in the denial stage and genuinely thought Riley was just a lazy boy.
As time ticked by it felt like we spent every other day at the doctors. I’m sure they were sick of my voice. I knew something wasn’t quite right and I would make constant appointments asking to be referred to see a professional to get a second opinion. The doctor would constantly say to me ‘we have to wait until Riley is 2, we need to give him time to develop’ It frustrated me as I felt time was being wasted and no one wanted to help.
3 months after Riley’s 2nd birthday and I had his diagnosis in writing in my hand! I felt relieved more than anything. I knew I wasn’t going crazy and finally I could get my son the support he needed. Deep down I think I knew Riley was Autistic before I received his diagnosis but I didn’t want to believe it. I’m not going to say I didn’t have a breakdown, because I totally did! Which finally drove me to anti depressants (which is another story – let me know if you want to hear about that?!)
As Riley’s parent, the hardest part for myself was the initial paediatrician appointment. There was a room of about 3-4 professionals including the Paedatrician, speech and language therapist among others watching Riley’s every movement.
I felt they were judging my parenting (what with being a single mum) I felt like I’d let Riley down, asthough I’d caused this for him. I had to describe Riley’s every move, what he could do and what he couldn’t etc. It made me realise that actually all the stress, worrying, tears, hard work and tiredness wasn’t what it was like having a ‘normal’ 2 year old child. It hit my hard that I do a lot more than what I would if Riley didn’t have Autism and that’s why I would get so frustrated and tired out. I remember trying to monitor both children in the over crowded what felt like boiling hot room. My face felt as red as a tomato, I was very flustered and stuttered my words. It’s one of my worst memories thinking back.
Receiving Riley’s diagnosis was the open door to support the he needed. My only advice to you if you’re a parent like me is to never let go of the reigns of your child. At one point I passed the reigns over to our ‘Keyworker’ who’s job role is to support us with any appointments, chasing results, getting ready for school, regular meetings etc. Never again!
It goes without saying that no-one will care for your child as much as you do. Nor does anyone wish to go above and beyond their job in this current society.
My son is now 4 and heading to school in September. Which has been 100% my doing. Everything from fighting for my sons EHC (Educational Health Care Plan) to gettin him a space in our special needs school. I wish I could winde back the last 2 years and do it all again knowing what I do now. Make sure to be on top of appointments and follow ups, if you don’t hear back on meetings or results don’t wait or chase the middle man (key worker) do it yourself. You’re your child’s advocate.
Best of luck if you have just received your child’s diagnosis. You’re not alone, there are so many of us ‘Autism/ special needs’ parents. Let’s all unite, get in touch! You can connect with me via Instagram, Facebook & Twitter – @CLARELEEBLOGS
Drop me a personal message for something a little more private if you’d prefer.