-Sean and Annette Hughes are the founders of Care For Us, a non-profit organization dedicated to helping special needs parents and their kids be the best they can be. This is Part-5 of a series chronicling their story. For previous posts click here.
Flash forward seven years and Aidan is now ten-years old. He sleeps ten hours a night like any normal healthy child should. That alone was a journey. He is a happy, loving boy. He has friends who care about him and two loving, protective brothers that don’t remember him any other way. He likes going to school, though some days are harder than others. From the outside he looks like any other neuro-typical fourth grader. But he’s not. Not exactly. He does have some language, though he still doesn’t speak in complete sentences. And though he’s much better at expressing his needs, it’s clear that you have to engage with him much differently than you do with other children.
Most of his bio-medical needs have been taken care of—yes, these are real problems for kids on the spectrum. He had gut issues, subclinical seizures, food allergies, vitamin deficiencies just to name a few. After what seemed like endless searching, it took us six years to be referred to a qualified neurologist. The science was starting to catch up with our needs. She put Aidan on a heavy vitamin regiment and anti-seizure medication after finding out he had irregular brain patterns. Interestingly, a DNA test showed that he did not have the known genetic markers commonly associated with autism. We don’t know what that means. Only that we don’t know exactly what triggered his developmental changes. It’s a question we may never get answered.
We don’t know what future will bring us. What we do know is it was a lot of work to get Aidan to the place he is today. Too much work for just us. It took a village. We couldn’t have come through this without the help of our support system and our faith.
Care for Us was born from the struggles and triumphs of our life as a family on the spectrum. We are committed to the idea that we can help new families in the early stages of the journey get the emotional support they need and continue to help those farther along stay strong through all stages of life. Community is important. Most people have no idea the emotional toll it takes on a family to raise a child with special needs. It affects you individually. It affects the marriage. It affects the other siblings. When we give and give daily, it’s easy for that well to get so depleted that we just want to give up. That’s when we need the strength of community and faith.
This story started with her story and his story. We were worlds apart physically, mentally and spiritually. Now we are one. We’d both change lots about our journey as a family. And there are things we’ve been through that we wouldn’t wish on anyone. But the family bond we’ve grown through the hard days and nights of autism is something I wish for everyone. Our mission is to help families like ours find it.
Though our journey is far from over, we have been able to come through this with a burning sense of purpose to give back to others. If you’re reading this, then you’ve found us. And if you’re on this journey and you’ve come this far, or know someone who is, then perhaps you’re willing to go a bit further. Look around the site. And reach out to us. We’re here. We’ve got support groups and counseling. All free of charge. You just have to show up. Because we know, especially in the beginning, simply showing up is about all you can muster. And If you do, you’ll find the power of spending time with others on the same journey, face to face with them and the world of struggle and triumph that we see every day.
Life with others is life better lived. And circles are better than rows. Find your circle. If you can’t, then find us. We’ve got a few for made just for you.