Kelly Bainbridge’s blog on Jacob & Connor’s GREAT journey….(7 years in the making):
You know that moment, as a parent, when you are told that all your concerns are correct, you are not that over fretful mother professionals had you convinced you could be, you’re not loosing you marbles and seeing things that aren’t there, you’re not doing something wrong, that moment when your world stops for a moment?
Well I do, I remember feeling an overwhelming feeling of grief, relief, anger, frustration, panic, doom….and then, for me, it was over. I knew going in to the consultants room that Jacob (my eldest) was Autistic. I’d known from him being 18 months old when he regressed, lost speech, withdrew into his world and away from mine. I cried for what felt like forever but in reality was probably only a few minutes of unconscionable grief, but being me (ADHD Hyperfocused Mummy working in the disability field, loud, connected and informed) knew tears just wouldn’t do, what we needed, now more than ever, was a plan, and since nobody seemed to have an answer for “so what now” I answered it myself.
You may be reading this and wondering where I am going with this, I imagine some will get it and others will be confused how this moment, this one encounter, one hour, one sentence “Your son has Autism” links to Jacob and Connor’s GREAT journey. Well in that moment, my life changed, my family changed, my focus changed forever, and ultimately for the better!
Lets flash forward a year shall we, Jacob is in school and not toileted, very little speech, thinks he is a dinosaur and is biting the other kids (a T-Rex to be precise) and is only attending mainstream school for a few hours per day, he is being sent home at lunch time as the school didn’t bother with the statement until after the diagnosis was confirmed which left us with no education provision for the first year of his full time education. So, we have Jacob, our special little T-Rex, now to have one T-Rex is lucky…to get two was just unbelievable, but two we had!
It was a little trickier with Connor to see the signs and going from feeling a sense of quiet satisfaction that I knew with Jacob so early, to feeling like I had totally failed him. With Connor I was completely blindsided. I honestly felt like I had been hit by a double decker bus when the school told me he wasn’t picking things up like the other kids and he was struggling in class with basic reading and writing. How could I miss it? the signs were all there looking back, but I didn’t pick up on it. Connor’s journey began to understand what was causing his challenges, why did his world seem so different to Jacobs? Why was he so afraid of the world? Why wouldn’t he just sit still…..Remember ADHD mummy? Yup, you guessed it, Connor is me in every way, including my ADHD (along with other interesting additions).
So now we are blessed in every way to have two interesting, unique, quirky, young men, who have broken the mold in every way. So the plan was always to get these two boys to be independent in the future. Working with adults in social care I knew what would happen to them without interventions and feeling confident that tapping into their world was key to bring them into mine (a method we use at MAIN).
My boys have accessed a variety of groups and services from many providers, MAIN being one of the first, made sense, it was the first place I went when Jacob was diagnosed so it would be the first place I would trust for respite. Jacob accessed the afterchool club at Beverley School which was fab….for a while, then it didn’t fit anymore. He loved going, but he wasn’t making friends, he wasn’t socialising, and he wasn’t in the community.
I decided to alter my provision to one to one support and hired people I knew and trusted to support Jacob on his journey. This would give me time with Connor to work on his issues and give him the quality time I knew he needed. This worked brilliantly, thanks to student learning disability nurses (who also happened to be family or friends – thanks Aunty Kirsty and Lisa), they had him getting dressed, putting his clothes away, supporting his speech development and so much more, suddenly my boys were coming along and making the progress I’d hoped for.
With student nurses, they eventually graduated and had to leave Jacob, so what now? I tried other employees myself but found it hard to work out the schedule (and I did it for a living!).
I began my journey with MAIN in October 2011 and what a journey it has been, but this isn’t my story, it’s Jacob and Connors GREAT journey, one of the early things I developed was a 1:1 support service, providing MAIN workers to people/families who desperately needed them. Of course, I was the first to purchase and we worked with an excellent group of support workers over that time working with both boys, who have supported Jacob to ride a bike (I never thought I would see that day, but come it did), to develop social skills and opportunities and, as we come to the real story, use public transport.
Today, after 7 years of struggling and fighting, and arguing, and moaning, and planning and preparing, my boys came home from school, on their own, not on the school bus, no (although we did see that in the early part of the school year) this was PUBLIC transport! Thanks to the support from the boys PA’s over the 7 years of support from social care, my boys have managed to get themselves from school to Middlesbrough Town Centre and too CNE (MAIN Head Office) unattended. They paid for the ticket, navigated the route, didn’t loose the money, engaged in the community and did something I honestly thought they never could. At that moment, that crucial, life changing moment at the doctors, that hour, that moment that I mentioned earlier, I lost sight of my sons future, I saw a life time of support and care. Today, Friday 16th January 2015, I could not be prouder and grateful to the support we have had to help me see that nobody’s future is written, certainly not my two quirky boys. They can do more than I give them credit for at times, they have worked so hard to achieve what they have today and I can say with absolute honesty, that none of this would have been possible without MAIN.