Mother's Day will probably be a bit different for me than many other Mums. Some will be looking forward to breakfast in bed, maybe some presents or being taken out for a fancy meal. Although I may not get any of these things from my oldest son, Mother's day is a time for me to celebrate everything he has done, and the new world he has created for me.
I've been blessed with two boys, Jayden aged five and Julian who is three.
When Jayden was born we didn't have any problems; he came on his due date and he
hit all his milestones until he was two and a half. At this point he shut down completely. He stopped talking, stopped responding to his name, and he stopped feeding himself. He had been potty trained but he started having more and more accidents. He stopped responding to my kisses, my hugs and I felt my own child was turning into something I didn't understand.
I became scared. I didn't know where to turn. I was worried that I was going to lose my oldest son. I could not seem to work out what I was thinking or feeling. All I wanted to do was help him but I was afraid that I didn't know how to anymore. I felt like a bad person. I had no idea what was happening to my son - and seemed to lose all communication I had once had with him.
After about three months I contacted the Children's Centre and straight away he was diagnosed with autism, developmental delay and a learning disability. I had no idea what this meant. It felt like my relationship with my son had gone back to day one and I had no idea how I could help him. I just kept thinking "Jayden is in there, he'll come out soon."
It's hard to express how difficult it can be when your child is diagnosed with something you have no knowledge of - there just simply isn't enough information out there for parents and the fear of the unknown can be overwhelming.
I kept asking myself, "God, why me?" The mixture of guilt for feeling like you were giving up on your son and constant fear as to when the demands of 24 hour care would become too much weighed heavily on me. But then every time I had a minute to myself I used to say, "I can do this. It's not about me, it's about Jayden and how we can help him."
I decided to educate myself, not about autism, but about Jayden. I needed to look beyond his autism and concentrate on Jayden as a person, not his disability. However, it was hard to find out how to do this. Local councils offer worryingly small levels of support to children with a disability. After a lot of work, we were lucky to have found an excellent Special Educational Needs Coordinator (SENCo) for Jayden who invited us to attend Mencap's Bags of Ability sessions.
Mencap's Bags of Ability have been a lifeline to our family. I knew my problem was communicating with Jayden but it taught me new techniques through the use of sensory-
story telling. For example, Katherine who worked for Mencap and ran the Bags sessions, would tell the story of the three pigs using straw and bricks. So instead of listening to the word 'straw'; the children could actually see and touch it. Children with autism struggle with the imagination to understand what straw is but now they could see it and touch it so they stayed focussed and engaged.
Of equal importance was being able to meet other parents during the sessions. I understood I was not alone. A lot of parents felt like me, and were scared of losing their child. The change and demands can be huge and there is not always enough support. The Bags sessions made me realise that I could have the same relationship with my son but just needed to learn a new way of communicating. Our relationship didn't have to change. I could still be his Mum.
After the Bags sessions I learnt a whole new way of communicating with Jayden and we've never been happier. After this I didn't want to let any Mum have to go through the fear I had initially and so I started my own support group with other mums that went along to Bags of Ability. It's so important that parents going through the diagnosis of a child with autism or a learning disability are able to meet up. It is a scary time, you worry you are losing your child, but the reality is quite the opposite.
The sessions we have are hard and sometimes end with us wiping each other's tears but that's important. We share everything, the fears we have and also the wonders of being a parent. I wouldn't share my baggage with my own mum, but I will share it with my Mums. We all know what each other is going through and we just want to be the best parents that we can be.
At the time I worried that if I lose Jayden now, when am I going to get him back? At age 20? These years are the most important time to get parenting right. They shape a child's brain and it's crucial the right support is there at the right time so children with a disability can reach their full potential. It's also important parents realise the new world that a child with a disability can give to you. You see the world differently and in a way you never could have imagined. The rewards are immense and I wouldn't change a thing about Jayden.
So this Mother's Day I will have much to celebrate. Jayden has just started making regular eye contact with me again. It's a huge step. It hasn't been easy for our family but I wouldn't have it any other way. I want parents to know there is help out there, and that it's ok to feel afraid about the future - but with the right support the future can be more than you ever wished for. I look forward to every morning I wake up to with Jayden, and I want other parents to feel the same.