So let me introduce them - Hannah who is 11. She's our rainbow baby (not so much anymore I suppose). She took a while to come into our lives and after miscarriages she decided she wanted to be the sticky one and bless us with her presence back in 2008. Mackenzie who was a little surprise, we weren't actively trying but not actively stopping. She was born in 2009, so there is only 17 months between her and Hannah. She is a ball of fire when she wants to be! She's confidence in her skin and who she is but has a lot of emotional regulation issues going on. She has high functioning autism and her emotional side has always been our biggest challenge with her.
Then there is Jacob, our little Whoops! But he is by far the best whoops we could ever imagine. He came 3 years earlier than planned haha! Wouldn't change it for the world and to be honest I don't think I could see myself with a 3 year old right now in my life!
And this post is about him - just him. I want people to understand how challenging and rewarding having a second child on the spectrum can be. How long it came to get that diagnosis and why I push for parents to never doubt their intuition about their child - no matter how many people say otherwise.
Jacob was born 4 days over his due date - a lovely 4kg of pure happiness and joy. He was a gorgeous happy little boy. He loved to dance (shuffle) to music, play with his toys without the constant need for someone in the room and was always that little baby who would chat the ear of a stranger! He slept like a log and was the one that just slipped into his own routine. He was always such a little babbler and had a very good vocab for his age. But at 20 months he still wasn't walking...
They don't really worry too much if they're not walking unassisted before 2 years of age. But he was getting close. We put it down to him just being stubborn! And he was a stubborn toddler - but before we were placed on a waiting list to talk to a professional at 21/22 months of age he decided to just get up and walk. And because he was such a late walker - he hardly fell over. So I just pushed those intuitive thoughts aside, just a bit.
But then things slowly started to change in the way he developed. He was still a happy little boy, but his vocab took a backseat while his body worked hard on catching up on gross motor skills. He became more clingy and sooky but being nearly 2 we just put it down to toddler stage. Mackenzie at this stage had just received her official diagnosis of ASD, but never thought to look more closely at Jacob's behaviours mainly due to his age.
Toilet training was a nightmare! By 3 he still wasn't trained and because of council regulations enrolling him into 3 year old kinder wasn't going to happen because they like them to be trained. Otherwise it would mean trips to kinder for nappy changes. He was suffering horrible separation anxiety and it was more obvious that it was more than just normal anxiety. He hated change to his routine and if something was out of place he would have a tantrum. I was watching him closely and at around 3.5 I was very concerned with his gross motor development and anxiety.
- He still hated play equipment, so we avoided parks
- He wouldn't attempt to ride a tricycle
- Hated painting or getting his hands dirty
- Separation Anxiety was getting worse
- He would avoid using stairs because of his gross motor issues
She red-flagged it as a meltdown... Now bear in mind you would think I would know what a meltdown was because of Mackenzie. But their meltdowns are very different in the way they react. I had no idea. And the more and more I thought back to his past tantrums I realised they were characteristically more meltdowns.
I started the ball rolling of getting him diagnosed privately and using a govt. funded program to help with his Gross Motor set up through the council. I wish I had pushed harder at this stage.
His OT through the agency was to say the least, useless. I voiced my concerns and she stated and I quote "he does not have Autism. He has separation anxiety with gross motor delay of about 2 years. He is not having meltdowns because I have not seen him have one and he will talk to me about his animals quite happily. You need to adjust how you parent him and use visuals to guide him." After nearly 6 months of using her and appointments for an hour of her sitting at my dining table but never interacting with him, I had enough and ceased the visits. I was also seeing the same psych who diagnosed Mackenzie... after doing the questionnaire I was informed that she could not official diagnose him because he and I quote again, "gave eye contact and was happy enough to discuss his animals with me".
I left both those professionals feeling deflated. He hadn't improved, his gross motor was getting worse and his meltdowns were increasing. He was now also becoming fixated (I wonder if you know) with Animals. And considering two professionals noted his keen interest and almost obsession with animals - they didn't see it as a red flag.
A couple of years went past, he did kinder and whilst they never saw issues (I think this helped due to a very small group and great teachers) he was still struggling. I was at breaking point because it felt like no one was listening at all! Except for one mum, who said to me. You know him, get a second opinion. ASD is NOT the same in every child. She suggested a paediatrician so I went home and placed him on the waiting list. I stated back with a private OT who was beyond awesome and a different psych who worked closely with him and understood him. Because of past dealings I still thought he just had anxiety, gross motor delay and now added SPD.
Primary School starts - and the first day is a wipe out. The joy as a mum watching your child go to school and especially your last was gone. He had made himself sick through the night worried about school. I was beyond being able to keep myself together and we broke down together. It was hard. I had failed him as a mum - I should of pushed harder and harder one those first two "professionals" who would always shut me down. His teacher and school were amazing and I do not regret for one minute moving the girls at this stage. We worked closely together and he finally started going. We did a couple of half days and slowly he got into a sync... we had moments where he was anxious but we helped him along....
Finally in April (approx) of 2018 we saw the new paed. I walk in and instantly feel at ease he has this sense of calmness about him. He takes one look at me and Jacob and asks how long? And I tell him everything. By the end of it I am exhausted because I have told the story so many times... and he says he believes me and that it's time to get the help we need. He pushed quickly because a diagnosis before 6 would mean getting funding. I cried then and there and he just patted my hand and said it will work out...
His psych who knew my background and Jacob's started the assessment within a week we had a diagnosis... hearing that report still makes me tear up. The way they diagnose ASD had changed since his first attempt - and maybe that's why it was never picked up. Officially in his report was a lack of eye contact (ironically) and the inability to maintain a back/forward conversation. And also the inability to start one and play in a group setting (of taking turns). The behaviours he had shown during the few months we had been seeing her were also reported and it felt like everything had finally be lifted. I wasn't failing him as a mum - I was advocating for him. He was officially diagnosed with High Functioning Autism with SPD and Gross Motor Delay two weeks before his 6th birthday!
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Nearly a year on and the reason I went through all that I want to write how my heart swelled today leaving him at school. We were so worried about the transition back to school would be, especially after 6 weeks off. He was nervous the first day, but after picking him up he sounded already like a different little boy.
The school introduced composites for 1/2 this year and I walked in with an open mind and knew that logistically they had no other choice. I knew a few were unsure and this is another reason why I wanted to write this out. Trust that your school and your teachers know what they're doing when you may think otherwise... Jacob has flourished in the past 6 weeks and I put it down to the fact he is in a grade with boys a year older. He has friends (not saying he didn't before LOL), but friends he WANTS to outside and play with, friends where he wants Mummy to quickly drop him off so he can play outside quickly in the morning, friends that make him talk too much that he needs to move seats (LOL, this one made my heart warm because while it may make some groan, it was a moment that made me realise he's going to be just fine)... he has friends that come up so quickly to him and he wants to engage in their interests, play in dirt, run around, play ball and be a little boy.
It is all I ever wanted for Jacob - to have that connection with people. Being able to discuss their interests without changing to his or feeling the need to walk away.
We still have our moments but the moments are getting less frequent and he wants to go to school and not miss out on seeing his friends. His interests have changed to Basketball but now I just say that Mummy has heard enough please just let me have a break for a bit. And he understands... But the husband does encourage the obsession LOL but they have something together so I can't be that mad about it all.
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The other day another boy called Jacob fat - and no I didn't go all mummy bear on the school LOL. I know his teacher and it was dealt with swiftly, but for a few days you could see that little anxious clock ticking - he said he wanted to work out more because he was fat.
And this is where this current blog ties in with all my other ones. Body acceptance needs to be taught at a young age. Jacob has struggled with his gross motor for so long that he hated physical activity. He is changing now as the anxiety isn't as strong. But he is always going to be that more slightly behind. His size doesn't determine who he is as a person or who he will be when he is older.
But for now this Mumma Bear is proud of her little guy for pushing those boundaries and never giving up.
And a note for other Mum's questioning whether to push for that second opinion... do it. Don't question yourself over your intuition as their mum. You're their voice and advocate when they can't do it for themselves.
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