“Amzah presents with delayed receptive and expressive language skills” ADOS assessment.
This road hasn’t been easy it’s been full of ups and downs, good days and bad days. If you’ve read my post regarding our bibic experience then this blog post is a follow up regarding the progress of my son and will make will much more sense.
He’s finally been diagnosed! Back in December Amzah was diagnosed with Speech and Language delay. It was an emotional time, so emotional I actually couldn’t bring myself to write about it. Not because I was disappointed but because I didn’t understand the report! Like what does “Receptive and Expressive language” even mean for my son and how did it correspond to his understanding and Behaviour. Despite my healthcare background this was about my son and this medical Jargon meant nothing to me!
It took me almost a month to actually understand what this meant, I mean how does any parent swallow that their child’s speech, language and understanding is that of an 18 month old and he’s 3?! HOW!?
How does any parent swallow that their son may need to go to a school with a specialist speech and language department and that he needs to be in a smaller setting!? What does this mean for him?!
I cried, I was angry! Every parent wants the best for their child. Amzah is not non-verbal he knows many words and can form 2-3 word sentences but people really struggle to understand him. He can also express himself but it can be very limited based on his environment. He has a very short attention span and struggles with adult led tasks.
At the time my youngest mini muffin was 18 months and what broke my heart was when they said “Treat him like you treat the baby….”
I was devastated it made no sense and I started blaming myself. “Did I not talk to him enough? Where did I go wrong? Was it because i went back to work too soon? Didn’t i play and read with him enough?”
All of a sudden it just felt like it was me “Lioness protecting her cubs” and nothing and no one was going to make this better but me!
So as i said i was uneducated and angry, this pediatrician tells me his findings and offers me nothing more but a statement. ” You should be pleased to know he has scored unlikely to be Autistic and he has a developmental delay in speech and language” Again I’m confused so i ask: “So what about his behaviour, the fact he struggles soo much, all these sensory needs, the poo smearing, the attacking me and others?!, Your basically telling me he behaves like this because he can’t string a decent sentence together?! Are you having a laugh?” That’s when he gave me the ultimate DR EGO comment. “Well, in regards to his behaviour there is this really good parental book on Amazon and a range of parental classes that could benefit you……”(tumbleweed)
The amount of rage that ran through me was unimaginable because in a sense my son is now a naughty child and I’m a parent who needs parental classes and a bloody book from Amazon to control him. I also felt very embarrassed for even being there in the first place. In a sense it was more difficult to leave with that diagnosis, because when soo many professional prepare you for the possibility of Autism you research it, you learn all you can about it. Speech and Language delay i knew nothing about, Amzah was in Speech and Language Therapy for 2 months prior to this assessment and it did nothing for his development. NOTHING!!! Even the thought that he may need to go to a school with a specialist SALT unit made it all even harder to understand because surely if he’s verbal it can’t be that bad right? He will catch up and be age appropriate right? Mini Muffin won’t pass him developmentally right? WRONG!
Mini Muffin who just turned 2 has caught up and is developmentally maybe a couple of months behind Amzah, he forms more sentences and copies everything that is spoken to him. Mini Muffin is very self-aware and capable of expressing his needs he’s so capable he will express Amzahs needs if he knows whats going on. To be honest having the two boys is like having twins. Amzah is almost 4 and behaves like his brother, still wakes at night every night. Runs away in public, needs to be monitored when he goes to the toilet, Has tantrums, still needs to be dressed if you want him to be ready in this lifetime. Talks Jargon when he wants something then throws a fit if i don’t understand.
He’s not long just finished he’s first block of sessions from Occupational Therapy and he’s back in Speech and Language Therapy weekly (with a new therapist). OT was very helpful for giving very practical methods to target his sensory needs like using a trampoline, weighted blanket and a vibrating snake (which i feel had the biggest effect)
For once it finally feels that after 2 years I’m finally getting the right support for him to reach his full potential
There is still much work to be done, He’s Speech and Language Therapist also whats him to join 2 group sessions a week to help with attention and concentration and the other to help with forming sentences, this is in conjunction to our weekly sessions with her! Im yet to work out if this is possible based on the fact I’m working too but something has to give as i have a year before he starts school and i want him to have the smoothest transition possible. At the moment it is seeming very unlikely that Amzah will be able to cope in a large class setting as he is easily stimulated and distracted and 30 kids, plus talking, colourful walls and a busy class room currently would be torture for him, but we have a year….A lot can change in a YEAR! RIGHT?
I will keep you all posted,
Feel free to ask me any questions you may have about my experiences x