“Are you OK?”
“Yes…just!”
It is so hard being a family with a special needs child (god I hate that term!) let alone being a family without one.
So much of our time is spent managing the household that when you have a child on the spectrum, you don’t seem to find any quality time for yourself, your spouse and sometimes your family.
We know how you feel. We have one ASD Cherub and he is only moderately Autistic, but still, we spend so time explaining, answering a million of the same questions, doing OT, doing Speech, going to intervention meetings, talking, talking, talking, talking with teachers, talking with family, explaining what ASD is, researching resources, arguing, managing meltdowns, arguing some more until you fall into bed at night hoping that tomorrow will be a new day with more time for yourself. BUT, when you get up, it’s only more of the same.
What we found is that there is an amazing wealth of support and resources out there, but you have to know where to look and who to ask. What we also found is that the best advice and the best support came from parents with kids on the spectrum but locating those parents was not easy going. We assumed (wrongly) that there would be support groups all over the place, but there’s nothing and there’s even less when you live in rural areas outside major rural cities. This really is a sad inditement on the state of affairs when dealing with kids that have special needs –including all aspects of Autism. But it’s not really anyone’s fault. No one person or organisation is responsible for it, and as much as we wanted to do something about it, time as been against us!
But we have a dream.
The Retreat for Special Needs Families
Renee and I have always wanted to run and operate a retreat of some kind which has taken all sorts of weird and wonderful incarnations. When we were younger, it was my hope that I would run a farm that young adults (and adults alike) could come and work for a roof over their head and food on the table. Renee had a dream of running a community centre where youth could drop in and get help for anything they needed. As we grew (older and together) the retreat changed and looked like a place where anyone could come and reconnect spiritually (no matter what you believed) mentally and physically. Then, it was an artist’s retreat, then it was a leadership retreat. Then, it was nothing.
When Zac was diagnosed, it became clear and apparent that we would open a retreat for families with special needs kids.
The dream was reborn and we have been thinking on it for the last couple of years, and now, the dream is around 15 years old!
A dear friend of ours had a dream that was birthed in 1984 and came to fruition in 2000. No matter what or where she went, she knew that every step she made was to fulfil this dream and vision and we were along for some of the amazing ride.
I recall her talking always about never letting go of the dream, seizing every opportunity and never losing sight of the bigger picture. She always said she was living testimony that great things can be achieved when a vision is given to you and the dream is placed on your heart. She walked (often ran) with such passion and belief that when it came full circle, she needed a new dream!
It’s these words I have held in my heart and mind for many years. I have no idea what I am doing right now that is going to somehow make a difference later, all I know is that I have a nagging need to find land, and a good piece of it!
When I get bogged down in the details and the concern and the great old question “Where will you get the money?”, I remember another friend who taught me in a leadership session about “just doing it”. She is a walking Nike ad, literally! And no matter how often she had “No, sorry” to any idea she had, she just ploughed on ahead and achieved great things. She never worried about the details and encouraged me to think the same way.
Our retreat will be a place where families can come (free of charge) and reconnect with themselves and find time to just take the space to breathe. Breathe in life, air and peace. It will be a place where the question “How are you?” will be asked and its hoped that if you feel comfortable enough to share, you will answer as honestly as possible without fear of judgement or raised eyebrows!
It will be a place where your kids will be looked after, where you can bring them without worrying about meltdowns, screaming matches, condemnation or breaking something. It will be a place where your kids sensory needs will be met with rooms of bubblewrap, slime, flour and rice. Where they can get filthy and no one gives a shit because all the guests will have had the same experiences as you. Your kids will ride horses, pat sheep, chase chickens, collect eggs, get licked by a cow or spat on by a llama. They will feed the animals, hold a guinea pig, quack like a duck. Their play will be monitored by volunteer OT’s and other therapists –and you won’t have to worry about a thing!
While the kids play, you can take a walk to the Tranquil Lake and throw a stone into the water for every burden you carry and hopefully let them go. You can cry silently under the Willows and let their branches take your tears to the heavensd. While they play, you can reconnect with you partner, kids or yourself or join in with a support discussion with a qualified support worker.
At night, we will celebrate with carnival atmosphere, firedancers and acrobats, jugglers and musicians and give each visitor an opportunity to express themselves creatively and artistically – no matter what your age or skill!
Everyone will be treated with love and respect with the hope that peace and joy are in abundance.
This is our hope and our dream. One that has tiny feet on it which need to grow but you can see there is already a strong vision.
We all need to dream, our ASD kids might not understand what that means, but they still need to dream for without dreams, we are empty shells.
Good luck in your dreams and plans...and always keep moving forward.
