Let Me Hold Your Hand

Pulling in to the sensory gym to pick Jackson up from his OT appointment today, I saw a mom (assuming she's a mother, could have been an aunt, foster parent, caretaker) I've not seen at therapy before. She was sitting on the concrete steps in the sun with her head bent, resting in her hands. By the time I got my kids ready to go inside, she had already gone in. Upon exiting my car, I could hear her son (again assuming her son) screaming from inside the gym. Then I understood. Everything inside me wanted to go hold her hand and tell her what I desperately want to hear in my moments like that. Since she and her son's therapist were handling the situation, I didn't know if it would help or hurt. I had to get Jackson and get us home for lunch and the rest of our school day. So, I didn't. But, I thought I would share this for those of you who know what this woman was facing today, who know that feeling all too well, desperation and exhaustion mixed with a little shame, suffering through a melt down at the playground, the bounce house, the grocery store, school activity, birthday party etc.

Let me hold your hand and tell you. It's going to be ok. I know you're a good mom because if you didn't care, you wouldn't be here, and you certainly wouldn't be fighting this battle in public. The sting of the daggers thrown at you from dozens of glaring eyes will only hurt for a little while, but if you give up and give in to that voice in your head that just wants it to be over, that might set your child back and undo the painstaking hours of work you've already put into overcoming this obstacle. There is light at the end of the tunnel, and there are many, many parents who know what you're going through. If one of us sees you out in public in a situation like this, we'll be routing for you. You can make it. You will survive it. And, I want you to know, I'll be praying for you and for that precious child of yours. I can tell you from experience. You will reach a day when progress has been made, obstacles have been overturned, and the road ahead made just a little bit smoother. You will learn more about life, love and humanity caring for your amazing child than you could learn from a dozen typical children. He is yours! You are his! You've been called to walk this road together, and God will never call you to something He won't give you the strength to handle WELL. Hang in there, and when you don't think you can make it, grab a hand and hold on tight. You are not alone. Let me hold your hand and tell you. It's going to be ok.

Falling Through the Church's Cracks

Every mother of a preschooler knows the struggle you face just trying to attend a church service, let alone worship. The hassle getting them dressed in 'itchy' stiff clothes, fed and out the door is just the first hurdle. Then there's getting them to their class room or the nursery. Then you have to make the decision (depending on the size of your church) will they sit with you in 'big church' or go to a children's church. Inevitably you're there during nap time or snack time or some other time that makes them act like they've been neglected their whole lives. Then you can feel the glares from what seems like everyone, some in judgment, some in pity, and you're not sure which glare feels worse. The stress is enough to make you want to just stay home and listen to the sermon podcast while they're snuggled in their beds taking a nap.

I've spent many Sundays that way, arriving home feeling like I've just fought a huge battle, and I don't know if I won. An old friend of mine once told me, "It can't all be easy. God expects a little effort on our part." And, I agree. It can't all be easy. We do have to go through those battles to raise children that love the Lord and want to serve Him. We've got to show them that it takes more to stop us than start us, and loving God is the most important thing in our lives. After all, they grow out of it, right? It's just a couple of years of struggling, right?

What if you had to fight a similar but tougher battle EVERY time you went to church, what if there was little hope of it ever getting any better, what if the rest of the church seemed to merely tolerate yours and your child's presence, would you still go? I know many families of children with special needs that have fallen out of church and fallen through the cracks because it just got too hard.

Mother's of special needs children are much more likely to develop severe depression than mothers of healthy, typically developing children. They tend to fall into patterns of isolation only adding to the problem. When you have to fight and struggle to accomplish simple tasks like going to the grocery store or getting a shower, you lose the will and the energy to fight those bigger battles.

Comparing the difference to taking my typically developing children and my special needs child to church, I can say it is definitely harder. I had gone to church my whole life, went to Christian college and intended to have my children in church their whole lives, too. But, things got so hard with Jackson that I felt forgotten and discouraged. I eventually just gave up, and we didn't go to church for months. There are so many emotions involved that it would be hard for me to explain, but I was crying out to God for help. Was there anyone who would identify with my struggle and help me carry this load?

Two years ago, we started attending a church with an amazing special needs ministry, Green Light.

One of the preschool children's ministers at our church will forever be one of my heroes. When she found out about Jackson's condition, it seemed like she would look for us to walk in the door. She made friends with him, and started a ritual with him for the first several weeks we were there. She would take him to the resource room and get him a special toy to play with. She would walk him to his class and stay with him until he was settled. She was compassionate toward me and paid attention to every one of his issues. It is no surprise that he LOVES it there. I believe it had everything to do with her taking the time to meet his special needs and break through that barrier.

Jackson doesn't need that kind of attention anymore, but he still remembers her. She's busy every Sunday doing what she does, but every time we run into each other in the hall, she greets us with hugs. She was a direct answer to prayer, a provision from God for all my tears. Because of her, I was able to actually attend a service and worship worry and distraction free. I was finally able to connect and be fed. Leaving the service now, I feel energized and encouraged, the way I used to feel before I had kids.

It's so easy for special needs families to fall through the cracks and fade away lost and forgotten to the local church. I know because I nearly did.

If you are a family with special needs, take heart, there are churches that will help you carry your load. If you are a member of a church, please take the time to reach out to those that seem to be carrying a heavier burden.

Different but not Less

“Different but not less.” – Temple Grandin

We tell our children that everyone is different. Everyone is special. Each person has a unique place and purpose in this world. However, we show them that those who possess certain talents, abilities or aesthetics are to be celebrated and lifted above the rest of us. Those talented, beautiful people are truly special. We also show them that those who possess certain personality traits, inabilities, and unsightly features are to be tolerated but not really accepted. Those different, unlovely people are truly insignificant. Most of us fall between these two groups of people, the special and the insignificant. If some of us are blessed with a child that possesses ‘special’ qualities, we burst with pride and excitement at all the future holds for our baby. If some of us are blessed with a child that possesses ‘insignificant’ qualities, we grieve the loss of normalcy and struggle to see any future for that child.

There’s a big social push to take care of those less fortunate in our country today, and I’m glad to see it. But, writing a check or joining a cause isn’t enough to change the way we teach our children to view those less fortunate, those different than us. The quote I used at the top of this post came from an autistic woman who has accomplished more than anyone thought an autistic person could accomplish at that time. She knew she was different, but she also knew that her difference didn’t make her inferior. Now if we could take that same knowledge she had of herself and apply it to our lives in the way we treat others who don’t look, think or act the way we look, think or act, I think we could raise children who truly see that EVERYONE is unique. Everyone is special, and EACH person has a place and a purpose in this world.