On 13th February this year I made a phone call following some advice from a health visitor to a Speech and Language therapist asking for some help, some guidance because my two year old wasn’t talking and displaying some unusual behaviours and had been for some time.
On 1st November this year, a mere 9 months later, my son will be assessed to determine exactly where he is on the autistic spectrum.
We’ve come a long way baby.
What a nine months it’s been. Long, yet fast. Painful, yet often rewarding. Daunting, emotional, challenging. I could go on and on with the many different emotions I’ve felt over this past year or so. Because yes a year ago, whilst I was still pregnant with Holly, I already had a very strong inkling that my Josh was a bit different. That things might be a different for us.
I’ve written previously about the acceptance of what we’re going through. Someone spoke to me quite candidly recently about how once we get that detailed diagnosis in November we can begin a grieving process. I didn’t quite know what she meant at first but she explained there might be an element of sadness; of letting go of the visions and things you expected your toddler would achieve and experience and accepting that our path may be a little bit off course in comparison to everyone elses. But comparison really is the thief of joy. And I don’t think I’d say I will grieve, I just find that such a terribly sad and therefore negative word. Of course I sometimes feel sadness. I’m his Mum; of course I feel a bit jealous I can’t just take him to soft play and sit and watch like all the other Mums. I feel a bit sad knowing he’s yet to say Mummy. I feel sad that I don’t know what is going on in his head and that I don’t always know he feels terribly overwhelmed until it’s too late and he’s sobbing.
But I have to say, I also feel a great deal of strength.
Earlier in the year, particularly over summer, I could feel myself withdrawing from seeing friends and going out and about. Josh’s meltdowns had ramped up a gear and not only was he quite aggressive sometimes, towards me, but he is a big lad so trying to deal with them subtly in public without the stares and even the blatant comments (“what’s wrong with him”!) was getting harder and harder. I started staying home or just going to the two or three places that felt safe. But something clicked in me over our recent holiday to the Cotswolds. A holiday were Josh had never been; a new environment, a new house, a new big boy bed, all of which he took in his stride. If we could handle that, several changes in a short space of time, then together we were strong enough to take on some new things once we got home.
So once we were back and Josh had settled back into nursery and got used to being home again I suddenly felt brave. I’m his Mum and it’s up to me to encourage him and take him on some adventures! I took him to a toddler gym session up at the university where he spent an hour tearing around to his hearts content and loved it. On the drive up there I had been shaking with nerves at how he’d behave and I hadn’t needed to worry at all. Another day, on a whim, I text my NCT friends, who I knew were meeting up for a coffee and play at a little church group and told them I’d see them in an hour! I don’t know who was more surprised; me or them, but I did it. To me, just going was a small victory. We only lasted an hour before Josh had a meltdown (although this was only due to the fact I wouldn’t allow him to steal another child’s pom bears) but we had done it. And as soon as Josh sees the car and his seat in it, he calms. It’s a safe place for him and he can forget the upset and hopefully remember what a fun hour he’s had.
In an even more positive turn, I’ve found a group specifically for children with additional needs, that I can also take Holly to. Off we went last week, a tummy of nervous butterflies, kind of like what you have on the first day of school. But Josh loved it! Admittedly at the beginning he may have loved it too much; he was rushing from one light to another in the sensory room, exploring everything but with no acknowledgement for the ladies there with little babies who must have been slightly concerned about this child bulldozing around. I could hear myself “sorry, I’m so sorry, he gets quite excited”, repeatedly making excuses, until Josh decided he wanted to be out in the corridor exploring the sensory items decorating the walls. Part of me was relieved to be out the room as I was worried we had bothered the other Mums and kids, but I also got upset; I’d gone to the group so excited, thinking I’d finally found somewhere for Josh to just “be” but as always he wouldn’t co-operate. One of the lovely volunteers came and spoke to me and sensibly said “of course he’s not going to just sit with us and sing with everyone straight away. This is a whole new exciting environment for him”. She made me see sense and to also embrace Josh’s explorer ways and we went on to enjoy the rest of the morning.
Josh is forever creating a better mother in me. I’ve had no choice but to learn; learn to be more patient, to be more understanding and put myself in his complex shoes before instinctively telling him off when actually he’s trying desperately hard to communicate a need to me but his frustration makes the delivery seem like he’s being naughty. The acceptance of things being different is a constant reminder; with his third birthday looming we’ve been receiving many party invitations from his little NCT buddies, all born around the same time of year. Another hint of sadness echos around me as I know a party is not practical for him; in fact it’d be a nightmare for him. But rather than thinking negatively, wishing he could have what his little friends do in terms of a celebration, we just adapt it to him and what he would enjoy. Josh loves to be outside, running free. He loves the family farm and he loves cake. So his birthday will be celebrated with a walk in the woods, followed by cake and crisps (pom bears are life ok) back at his grandparents farm and we’ll just invite his friends to join us. Relaxed, lots of space, just what he will enjoy. There is no reason to be sad that he won’t have a party. As time goes on, I see this more and more. I don’t need to feel sad. I just need to feel positive and optimistic.
I don’t know what the future holds for Josh. I don’t know what the exact outcome of the assessment will tell me. I don’t know when he’ll say Mummy. I don’t know if he’ll go to mainstream school. I do know that I have to let go, and accept what may. I am not grieving the life I thought my little boy would have; I am letting go of the preconceived expectations and accepting and embracing all the surprises, challenges and joy that my beautiful little boy will bring my way.