Archive for November, 2012

A New Normal: One Mom’s Experience with Sensory Processing Disorder

Monday, November 26th, 2012

This is an article I wrote for Autism Speaks – I wanted to put it here in case it’s helpful to anyone here as well.

Sensory Processing Disorder (formerly called Sensory Integration Dysfunction) is closely aligned with autism in that most autistic children have significant struggles with SPD. The following is an editorial from Jennifer Shaw whose son was diagnosed with SPD. Jennifer is a speaker, singer, songwriter, and author of the book Life Not Typical: How Special Needs Parenting Changed My Faith and My Song, an Autism Speaks resource. Visit her online at  

I was the mother of two beautiful girls and was thrilled to add a son to our family. When Toby was born after a difficult and dangerous pregnancy we were especially thankful that he was healthy. He seemed to be a very unhappy baby compared to our girls, but we hoped he would grow out of it. 

The first indication that something was out of the ordinary was when we could not get him to eat any food. I had nursed him without any problems, but when we introduced baby foods, it was a daily struggle that we lost. We also noticed that he never babbled or made any sounds and he rarely smiled. Eventually it was clear that he was very speech-delayed, but because he had suffered from repeat ear infections which caused clinical deafness during his first year, we attributed a lot of his irritability to pain and hoped that when his hearing improved, his speech would come along. After surgery on his ears, his hearing did get better and the infections went away, but he still did not make any sounds.

During Toby’s second year, my father was dying of ALS and that took much of our emotional energy so we did not react as quickly to the signs we were seeing in Toby as we might have otherwise. Still, Toby’s behavior was getting more and more extreme. He wouldn’t touch anything or play. He did not want to be touched. He was terrified of being messy or being anywhere near things like grass or sand. A drop of water on his clothing would make him scream. It became really frightening and we did not know how to help him.

When Toby turned two, we started him at a therapy school for speech delay. There was an occupational therapist on staff and she was the first to diagnose him with Sensory Processing Disorder (previously known as Sensory Integration Dysfunction). Toby’s brain was not interpreting sensory input correctly. People with this disorder can suffer in a variety of ways, but in Toby’s case, he was extremely hyper-sensitive to touch of any kind. Food in his mouth, clothes on his skin, crumbs on his hands were all completely intolerable to him –his brain told him they were “hurting” him. He was completely terrified of his world and shutting down.

Toby began play-based occupational therapy, speech therapy, some physical therapy (because he didn’t touch things or play and had poor balance his muscles were very weak), and food therapy. Within two months my son who had no sounds said, “I love you, mom,” and within a year, Toby’s progress was nothing short of miraculous. He is now eight, and has been discharged from all his therapies for the past three years. It is absolutely amazing to see the change in him and such a blessing to see him able to enjoy his world.

I am a speaker and musician, not a doctor or therapist, but we learned a lot of things along the way that I share with people who suspect this condition in their own children. There is so much hope if you know where to look, and although Toby’s outcome is not typical, there is help for every child with this diagnosis. So here’s my advice:

Do not ignore the signs, even if you don’t know what they mean. This is by no means a comprehensive list, but some of the symptoms of SPD are speech delay, poor coordination, poor balance, avoiding touch or seeking touch in extreme ways (running into walls or falling down on purpose, running into people), extremely picky eating or extremely messy eating, irritability or a “difficult” personality. SPD is often misdiagnosed, especially in older children or less severe cases, as ADD or ADHD.

Do not wait, even when your pediatrician tells you to. After everything we went through with Toby, my pediatrician (whom I love and really respect) told me that she gave me the wrong advice by advising me to wait for Toby to catch up. This may be good advice for many problems, but SPD is not one of them. Early intervention is critical, and treatment is so much more effective before the age of three that you cannot afford to waste time. If you suspect something, get tested by an occupational therapist – if they say there’s nothing to worry about, fine, but if not, you have not wasted valuable time for therapy.

Get help. There is a federal program for ages 0-3 “developmentally-different” children available in every state. It goes by many different names – ours was “Help Me Grow”. They will do testing and help get your child into therapy programs, many of which are free if you qualify. Toby’s therapy program literally changed his life and ours. You can call the special needs department at your local school district and they are usually able to tell you who operates the program in your area. If your child is over the age of three, help is available through your local school district’s special needs department. Take advantage of any therapy coverage on your insurance plan.

Get educated. Find out all you can, and do everything you can to help at home. An excellent book on SPD is The Out of Sync Child by Carol Stock Kranowitz. Talk to your therapists about what you can do at home, watch the therapy whenever possibly, and ask a lot of questions. We continued all of Toby’s therapies at home, and really attribute a lot of his gains to this. We were able to overcome a lot of Toby’s food issues only because we worked on it every day at every meal and because we had learned techniques from our therapists.

Re-define baby steps. This is not a quick fix. For example, Toby was literally afraid of food. We were not usually able to get him to stay in the same room with us while we ate – sitting down and eating a meal was out of the question. So first, we worked on getting him to be with us in the room at meals, then getting him to sit at the table, then allowing us to put food on the plate, then touching the food with a fork, then touching it to his tongue but not eating it, etc. It was a long, frustrating process, but my son eats a healthy diet now and enjoys mealtimes with our family. The simplicity of a family meal has become a true blessing in our lives.

Get support. Dealing with special needs can be very lonely and frightening. Our church and our faith were amazing supports to us and truly what held us together at times. The other parents of special needs children at Toby’s school were also a wonderful source of support. Realizing we were all dealing with similar challenges and emotions helped us see that we weren’t alone. They were also a wonderful resource for practical ideas as we all talked about what was working or not working for our children.

Don’t give up. SPD can be overwhelming and confusing. It can be hard to navigate the therapy system. Every therapy will not work for every child and you will need to be careful and wise about your choices. Take comfort in knowing that there is help and things can improve. You are your child’s best advocate, and your child needs you. 

The Other Columbus and LeSea Broadcasting

Tuesday, November 20th, 2012

Community Church of Columbus, IN

My sister in hair-dos, Mechelle.

Services at Community Church of the other Columbus - Indiana

The back of the Lilly house in Indianapolis

Doing an interview on The Harvest Show from LeSea

Doing a song on The Harvest Show

With Rinnah on the side of the set waiting to go on.

This past weekend my mom, my older daughter, Rinnah, and I headed out from Columbus, OH to Columbus, IN. I was invited to sing and speak at Community Church of Columbus for the conclusion of their missions awareness month. Since I’d only been home two days and she’s becoming such an expert at World Vision and has never been on a television set (which we were going to do the next day) I decided to let Rinnah miss a day of school and come with us. My mom ran my table, Rinnah ran the World Vision table, and we knew we’d have extra time on the road for general hilarity together. It’s funny, this was a pretty easy trip for us in general because we had extra time and full nights of sleep, etc., and Rinnah still thought it was a pretty intense trip! There was getting up early, though, and in eighth grade, that’s all you need to make it intense.

We left on Saturday and stopped in Lebanon, OH for dinner where we also found the best sundae on the planet. Salted carmel custard with hot fudge – holy cannoli, Batman, that was amazing. And sticky. And way too big. And yet, we still ate it all. Funny how that works.

We slept in Columbus, IN and got up early the next morning to sound check at the church before the services that day. While there, I ran into Mechelle, the first person I’ve ever met with my hairdo! We decided we were honorary sisters. 🙂 I love the heart for missions at this church – they support a huge number of missionaries and dedicate a month of their year every year to grow awareness for this. The worship director, Jill, and I hit it off immediately, and she was so fun and easy to work with. I feel so blessed to get to go to the churches I am called to – it is such a great reminder that the family of God really is everywhere.

After the services we had a great lunch with Jill and her husband and then had the whole day to make our way up to South Bend where I was going to be on The Harvest Show live in the morning. We stopped in Indianapolis to check out the Lilly house at the Indianapolis Museum of Art, and realized we could have spent an entire day there exploring the grounds and trails – what a beautiful place! Next time I’m out there, I hope to have more time to see it. Then we headed up to South Bend and found our hotel right on Notre Dame’s campus.

The next morning we got up early again and headed to LeSea’s studios. I soundchecked and then the show went live at 9. That morning the other guest was the head of the political science department at Notre Dame and they were discussing what was happening in the Middle East. Definitely out of my depth there, as my knowledge is pretty basic in that area, but still, he was a very gracious, kind man.

Rinnah and mom hung out on the side of the set to watch. I had two songs and an interview about my book. Then back in the car to head home. We’ll be at home for about another day and a half before our family heads to Michigan for Thanksgiving. We always do basically a giant circle around the state visiting all of Nathan’s family this weekend, and while I can’t say I’m excited about a lot more the time in the car, it’s always fun to see everyone. And after this, I have a few events at home in Columbus, so I’m very excited to stay in my own bed for a while!

FamilyLife Today with Dennis Rainey and Bob Lepine

Thursday, November 15th, 2012

Host Bob Lepine, Amy Julia Becker, me, and host Dennis Rainey on FamilyLife Today

The FamilyLife ministry headquarters in Little Rock, Arkansas

Yesterday I had the very cool opportunity to tape two shows for FamilyLife Today. This show is one that I have listened to so many times, and is on stations all over the country. It’s really such an honor to be asked, and I was thrilled to be on the program.

We taped two shows which will air as a part one and part two. On the program with me was Amy Julia Becker, a writer for many magazines including The New York Times, ChristianityToday, and She also has two books and her daughter has Down Syndrome. The focus of the programs was raising special needs children and how that affected and informed our faith. The shows will air sometime in the spring, and I will be sure to let you all know when.

I have to say, every single person I met at FamilyLife was so gracious. What a wonderful place to spend some time. We had lunch with several of the staffers and the hosts before the taping, and afterward, Dennis Rainey took us to see a new project his wife is working on – Christmas ornaments of the names of God. I loved that concept! After that, we headed back to the hotel to drop Amy Julia off since she was leaving this morning, and then they took me back to the airport.

It was great to get home last night! I’ve been on the road a ton this fall, and I am missing my family so much! I have one more trip this weekend, and then, while we’ll still be traveling, they will be with me, and that makes all the difference.

WDCX and Long Island after Hurricane Sandy

Monday, November 12th, 2012

Leading worship for the volunteers before the disabilities conference

At the disabilities conference

Sharing my story at Island Christian Church

Some of the storm damage from Hurricane Sandy

With the awesome campus pastor, Mike O'Connor, and his amazing wife, Creative Arts director Mary O'Connor,

I’m sitting in my friend’s house on Long Island. It’s been a busy weekend. In many ways great and fun, and also very emotional. My husband, Nathan, and I started our married life out here on Long Island, and watching all the devastation that Hurricane Sandy brought to the East Coast hit close to home for us. We still know a lot of people out here and remember doing a few hurricanes ourselves, but nothing like this one.

Last Thursday, I did an interview on LifeLine with Kurt Goff for WDCX up in Buffalo and Toronto, talking about the book and the new album. They’re a great station who has been really supportive of my music in the past. I was waiting to hear from Island Christian Church out here on Long Island if I was still coming! The hurricane damage was so severe that most of the people around the church didn’t have power for almost two weeks. It had looked good, but then, just as they were getting power back on and things a little closer to functional, Long Island got hit by a nor’easter which knocked the power out again! I was supposed to fly out in the morning, and during my interview I got the message to come ahead. The power was on at the church and the airport was open. They were going to try it!

I packed up quickly and got to Long Island without much trouble at all. I felt so badly that my friend, Linda, was picking me up, though. I had heard about 6 and 8 hours waits to get gasoline, and I hated that she was spending it on me!! She said things were getting better though. She had gotten up at four in the morning to get gas and had only had to wait until 7:30. I thought she was putting a good face on that one!

By the time I got there, most of the obvious stuff had been cleaned up where the church was. Fortunately for them, they are not on the South shore which is where the intense damage was, and they were enough inland from the Sound that it wasn’t as bad as it could have been. It was still unbelievable, though. We would drive down one street that looked perfectly fine and then turn the corner and there would be four huge trees laying on one house, and the whole street looked like someone had come through with a giant weedwacker. At one stoplight I counted 28 power company trucks ahead of us, and there were license plates from all over. People forget that even though Long Island is huge, it’s still an island, and getting supplies out here can be pretty difficult.

We went ahead with the events, and it was such a special weekend. The first was a disabilities conference on Saturday, and it was like nothing I’ve ever done before. They were considering cancelling it because many of the people who would attend were from group homes and many of the homes were trying to conserve gas. They decided to come, though, and in the end we had around 350 or 400 people there for the conference – it was amazing! I also debuted an early version of my new video “Your Child” and that was very sweet. I was really touched by the faith of so many present – they are doing an amazing ministry, and many are responding!

On Sunday, I did about a half an hour on both services giving my testimony and some thoughts on what God has been teaching me, and also singing a few songs. It was a good week to be there. The church had just gotten the very hard news that one of the pastor’s wives from another campus was now in palliative care for her cancer and they didn’t expect her to live very much longer. I could tell there were so many people who were just hurting from this news – she must be a very special person. It was good to be able to encourage people and remind them that God is faithful and in control. And I have to say, this church really ministered to me as well. I feel like I’ve met new old friends.

Tomorrow I am heading to Little Rock, Arkansas to tape FamilyLife Today with Dennis Rainey and Bob Lepine. I’m really looking forward to it, but also sorry to leave my friends. It’s good to see things looking up here. We’re planning a tour back this way next summer, so knowing I’ll see them before too long makes it easier to go this time.

Remember Nhu and Guest Worship in Wadsworth, OH

Monday, November 5th, 2012

At the Friday night thank you event

At the Saturday night fundraiser for Remember Nhu in Bolivia

Two of the little Thai dancers from Saturday night's event

The upside down ark at Freshwater Community Church

Just got back from a wonderful weekend up in Wadsworth, Ohio which is near Akron. Remember Nhu, the group we went to Thailand with last spring and did a benefit for in Portland a couple of weeks ago was having a couple events there this weekend. The first, on Friday night, was a thank you and update to current supporters. The second one on Saturday night was a benefit event to raise money to start a new ministry in Bolivia. On both events, I shared some of our story and several songs and also the new video for “To Be Love,” the song I wrote for Remember Nhu. It was also great to be raising money for Bolivia since we got to know the couple they are sending there, Peter and Cali, when we were in Thailand. They were there training to be on staff, and now will be heading up this new initiative. They both went to Cedarville University which is where I used to teach, so we had that fun connection as well.

On Sunday morning, I went to Freshwater Community Church also in Wadsworth, and got to share and sing on their morning services. They are a great church – I was there to do a women’s Christmas event for them a couple of years ago, and they are just a fun, solid church with great, warm people. They also have a really interesting building – I think it looks like someone turned Noah’s ark upside down. They are outgrowing it, though – it was packed for both services and I’m not sure I’ve ever seen that many children!! – so they are in the middle of a building campaign. I have to say, I think I will miss the quirkiness of their present building, but it’s good to know that the church is the people, and I’m pretty sure I will be seeing them all again. 🙂