October 14th is going to be a date that stays in our mind for our family.
It is the day that we were told that our son was on the ASD Spectrum.
Rufus is a whirlwind. He is bubbly, bright, sociable and does not stop. He hasn’t stopped since he found his legs and arms at 6 weeks old, 8 weeks old he was constantly looking round, inquisitive about everything, a nightmare to feed in public. At 10 months old he was walking and before his first birthday he was running around the park. He had started to say words “mummy” “apple” as clear as day but then you didn’t hear them again. At 18 months I tried not to compare him to his peers who were starting to say a fair amount of words and I longed to hear my little boy called me Mummy. Something in my gut told me that something wasn’t right with his expressive language so I got in touch with my Health Visitor.
Here my first battle commenced. My health visitor did a quick assessment of Rufus and went away. On our next appointment she informed me that she would not be refereeing him to Speech and Language because we were still breastfeeding. Yes, you read that right! Because we were breastfeeding, even though the WHO recommends breastfeeding until at least two and there is absolutely no evidence what so ever that breastfeeding would inhibit a child’s speech (I mean seriously its not like I was walking around with him permanently attached to my breast, anymore than any other child would not be speaking when they are drinking or eating…) but they picked the wrong person to even attempt that little battle with and after some phone calls we had our SALT referral.
Our first SALT appointment was in Feb 2015 and in Nov 2015 our SALT told us she believed there was more going on than just a language delay and she would be refereeing us to a Paediatrician. It was the first time someone had mentioned the A-Word to us.
Rufus started preschool in the February when he turned 3 and we started to look at the complexities of the situation, the support he would need, the uncertainties of what he would need moving forward. We read up on ASD. We joined support groups on Facebook. We met other parents whose children were on the ASD spectrum. But the thing is with ASD it really is a spectrum, whilst all of it relates to your child at the same time none of it does…at times it really is very overwhelming and hard to comprehend, especially when you’re sat with your sweet, somewhat crazy like little boy whom you just see as “normal”.
“Normal” really is just what you’re used to. We would have weeks where we would look at each other and “Nah, its not ASD is it” and then have absolute weeks from hell where we’d be “Yeah…yeah it definitely is isn’t it?”
We discovered Limbo Land. Where you are waiting for your appointment to come through but in the mean time you needed to get certain mechanisms for support in place and as a family we had to process that those Kodak moments we’d been dreaming of, might not be quite the same in reality (I’m not going to digress to much into that at the moment as I think that will be another blog post for another day…)
9 months after our referral we received a phone call telling us the Paediatrician had a cancellation, could we be there within the hour. So there we were in hospital room, unpicking all the things that my little boy did and didn’t do. I was so pleased that I’d taken my folder full of referrals and reports with me (I was told not to but it was really helpful). It was really difficult to gage how the appointment was going, it felt if i’m honest I was being grilled on my parenting skills by my strictest teacher at school. But our Dr concluded that Rufus presented with a number of traits that were typical of the ASD spectrum but wanted to go away and speak to everyone else who was involved with him to build up a bigger picture, then make a decision at our next meeting.
It was odd coming away from the meeting. A mixture of relief and despair. A relief that we weren’t imagining this, that I wasn’t making it up (I mean really, who would do that? I know I’m a bit neurotic sometimes but i’m not THAT neurotic). Knowing what we were looking at with more certainty gave us more of a focus as to what Rufus would need support wise and helped us look at what we do on a day to day basis (we’re still learning on this one and probably always will be).
We have had some fantastic support throughout this from family and friends (old & new). Our preschool has been fantastic and we also now have an additional provision at a preschool for children with additional needs. As the weeks went past, we started considering school provisions as we have to apply in January and just continued to process, come to terms with what we were dealing with. Life goes on, we go to work, we do things that we enjoy as a family.
Our next appointment with the paediatrician didn’t go quite how we thought it would. She had received a really positive report from SALT, that his language is improving greatly (it is, he has made massive improvements. This is down to lots of interventions from lots of people, not just SALT and he still has a long way to go). We had the sense straight away that she was not going to diagnose him, which she confirmed quite quickly. She wanted to take him to the complex case panel to get further advice, which wouldn’t be until Nov and we wouldn’t see her again until the end of the year. It was a frustrating appointment for us and we felt a lot of information wasn’t being taken into account, for example from preschool who see him the most out of any professionals. We really wanted to come away with more certainty so that we were in better positon to find the best suited school place for him but instead left feeling more uncertain than ever. We were then left in a positon questioning everything we had been doing, which is a hugely emotional rollercoaster after spending months coming to terms with the prognosis. Suddenly you’re faced with more questions than answers.
Which brings us to Oct 14th. We’d had a missed call from our Dr and were all a little baffled as to why (they don’t normally phone you…). I’d been at the additional needs preschool, talking about EHCP criteria’s and school places, we’d left to come home on the bus. Rufus was falling asleep (noooooooo), so we got off the bus early in the Town Centre under the bribery of McDonalds to keep him away (yeah, yeah I know) but he was now distracted by the Halloween shop opposite, when my phone rings. It’s my husband who has spoken to our Paediatrician. She was able to speak about him at this months Complex Case panel, the other professionals all felt he was on the ASD Spectrum so she was formally diagnosing him and would be sending us a letter. So with a tired, grumpy but slightly wired 3 year old next to me, I stood in the middle of our town centre trying to process what I was hearing. And pretty much all evening I continued to process that information, I think mostly just because we weren’t expecting it more than anything. Moving forward though, at least we know. We know that the interventions we’re putting in place should be the right ones. We can look at school provisions and be armed with the solid knowledge of this is what it is, rather than well, we think…We can make sure he has the support he needs so that he is able to access the same education and have the same choices, chances as any other child.
Rufus has so much to offer the world and now our journey begins to make sure he is able to do that.