Follow by Email

Saturday, January 19, 2013

SPD Revisited

Today I was reminded of how far our family has come in our special needs journey. I host a monthly support group for parents whose kids have Sensory Processing Disorder, and although I am not as on top of it as I should be some months, I'm always fulfilled when we have a meeting.

Today was no exception. I wasn't going to have a meeting today because there is so much going on with our own family, I hadn't gotten my act together to organize a meeting for other families. But then I heard there was a mom in the area who was really looking for support. She has a child who was just diagnosed with SPD and is overwhelmed. I decided to throw out an invite to our group over Facebook and have an impromptu meeting so that this new mom could have a place to find support and hope.

The mom came with her husband and two children. They were the only ones at the meeting, which is understandable since I slacked off and didn't plan farther in advance to have the meeting in the first place. (Sorry, group!) The family was a little late for our meeting, so I had time to reflect on some things as I waited for them. 

There have been other times when a family has come to our meetings, just having had a child diagnosed, and they are looking for answers and hope. I have handled these situations in the past, trying my best to give the parents a little bit of direction and hope for their future, and their child's future. Today, I don't know why, but I was a little nervous about meeting this new family. Since I've met newly diagnosed families before, I couldn't understand what the deal was. I sat there and tried to figure it out.

I finally realized that it was because it was just me at this meeting. And the new family. The family was coming to me for help today. For answers. I haven't been a practicing social worker for 10 years. I don't know all the new things that current social work professionals are up to speed on. I don't have any new-fangled research to back up my opinions or parenting techniques. All I do have is practice. Times four. I was nervous today because I was this new family's link to hope, one of their first experiences in this new SPD World that they have found themselves thrown into. What if I didn't have answers? What if I didn't know how to help them? I was a little worried. I decided all I could do was be honest with them.

The family came, and they were beautiful. We have not ever had a father come to one of our meetings. Grandmothers, aunts, moms, sisters, all sorts of female types come to our meetings, but dads are missing. I keep telling Alex he needs to invite all the papas over to chat about the Dad Experience of raising kids with special needs, because it is a uniquely different experience. 

Anyway, today a Daddy was there. The parents were wonderful, warm, supportive, caring, overwhelmed, scared, and worried. They had never heard of "SPD" before a few weeks ago. They thought they were bad parents because they couldn't discipline their child in a way that seemed effective to the outside world. They feel judged and alone. They are worried about their child's future. They're worried about their child being teased. They don't yet know how to navigate the educational system. They are intimidated by the books their doctor said they should read. They're trying to find an Occupational Therapist who takes their insurance. All the things that we all go through as we raise our special needs kids. 

I knew exactly what they were experiencing. I threw my heart around this family as they sat there, pouring out their worries to me- a stranger. They were so brave. They're so good. They're a team who support each other and love their children more than anything. I was reminded of how long it's been since I sat in my first SPD support meeting, bawling my eyes out because I was so overwhelmed and frazzled. We've come such a long long way since then. 

I guess I know more than I think I do, because I had an answer or suggestion for all of the family's questions. I was worried they would ask things I didn't have experience with, but I guess because I have four kids who all have different sensory issues, I could identify with all the questions this new family has. I was so relieved that they said it was helpful to talk with me. I was overwhelmed with gratitude that I could play a part of this family's journey into acceptance of their daughter's world.

Most of all, we parents just want hope. Hope that our kids will be ok and have a happy, healthy life. The father I met today asked about how SPD progresses as a child grows up, how it manifests itself in grownups. I explained that based on what I've read, things are a little easier as turn into adults. As adults, you can make choices about things you don't have control over as a child. As a grownup you can pick what career you want to work in. If you don't like noise, don't be a construction worker. As a grownup, you can choose to wear socks or not wear them. You can decide what flavor of toothpaste you like the best, and what kind of toothbrush you want to use. You can live in the kind of house you want to live in. You can have carpet in your home so you feel softness on your feet, or you can have hard wood floors so you can hear the 'click' your shoes make when you walk. You can choose when to go grocery shopping if you want to avoid crowds. There are just so many things that as adults you can make choices about so you can live the kind of life that makes you happy. 

I told this new family that their daughter has the best possible thing- a family that loves and supports her. Everything else will fall into place. They should have hope! When they start working with an OT, they will learn even more about their child, and how to help her navigate through things that stress her out. Things will get easier in some ways. Yes, you have to change your expectations because now you know your child has something to deal with that will make life different for her than you thought it would be. But it's just 'different'. Not worse or scary or hopeless. Just different. She can still be and do anything she wants, with her family's support. I told the parents that the road to accomplishing her goals may be different than they had thought it would be, but she can still accomplish anything she wants. SPD does not limit you. It just means you may take a different path to get to your destination.

Talking with this amazing family today made me just stop and think about my journey. I never thought I'd be able to talk about my kids' special needs without sobbing. I never thought I would know enough to be able to help other parents. I don't know everything, by any means, but I hope I can at least give other families hope. The dad I met today said that hope is the most important thing to him. Amen.

No comments: