Living as a mom

Archive for the ‘SPD’ Category

The dentist.

What do you think of when I mention the dentist? Do you think of that Bill Cosby routine where he talks about the Novocaine numbing him so much that he couldn’t talk ?

What thoughts does bringing your children to the dentist conjure up? Is it a lot of work? Do you have a child who is frightened of the dentist? Going to the dentist with a child who has SPD can be a nightmare that goes beyond the typical fear children have from doctor’s visits and unfamiliar situations.

Today I brought both of my kids to the dentist. This was the second time that C5 had ever been to a dentist. Her first trip to the dentist was about a year ago, and it was by far the worst medical experience that C5 and I ever had together – even worse than getting shots. I was frustrated, and she was terrified. The dentist pushed through the exam even though C5 was panicked and screaming. Things really went awry when the dentist insisted that I lay down on the chair and restrain C5 so that she could count her teeth. You can be sure that C5 and I will never forget that, and we’ll never go back to that dentist.

In an effort to avoid living through that again, I got a referral from our pediatrician for a new dentist. Other moms told me how wonderful this new particular dentist is. So I dove in and made an appointment for both kids. It turned out to be a great decision!

Today C5 panicked just as the hygienist touched her mouth. It took some time to calm her down and coax her back into the chair. Our hygienist spent a long time showing her the instruments and explaining the procedures step by step. With much patience the hygenist was able to clean C5′s teeth and finish most of the exam. This hygienist even got C5 to laugh! The dentist himself was also quite successful with his examination. He explained that his approach is to establish trust and then help kids learn cope with the whole dental experience rather than avoid things that cause problems for child such as noise and light. He believes that it is the best way to equip children with special needs for the real world. I completely agree with him. We are returning to the dentist in a couple of weeks in order to establish that dental visits are OK and to build familiarity. He is even going to try to do things that are unexpected in order to teach C5 how to cope with a dentist visit.

C5 was positive and proud at the end of the visit. She was trilled that she was able to tell everyone all the things that she learned at the dentist. She was also particularly excited about one discovery that the dentist made. C5 has two loose teeth.

HERE COMES THE TOOTH FAIRY!

It has come to my attention that Massachusetts Senator Karen Spilka is sponsoring an act to improve insurance coverage for children in Massachusetts.

Insurance will often cover rehabilitative services, therapy that helps a child to restore lost function. Currently there is a loophole in the law that allows insurance companies to deny coverage for medically necessary habilitative services. This type of service teaches a child to acquire a skill needed in order to function in age appropriate ways.  Occupational Therapists, Physical Therapists, and Speech Therapists provide these types of therapies. Closing this loophole means that health insurance companies will be required to pay for medically necessary OT, PT, and Speech Therapy. My daughter no longer receives services from our OT because our insurance company does not cover “habilitative” therapy.

If this bill is enacted, my daughter and many other children with SPD and other brain-based, genetic, and developmental disabilities will be able to receive these much needed services.

The hearing date for habilitation bill #70 is June 10, 2009. Would you consider taking action on this right now? Please call your state representative to voice your support for the habilitation bill #70. You can find out who your representative is here.

Photo courtesy of Eric Beato

This is how I get my child with SPD out of the house on a really sunny day.

~My daughter wears either Hannah Anderson underpants because they are so soft or underwear form BJ’s because they fit her better than anything else I have found.

~Sundresses are the best attire for my daughter. They slip on quickly, and they are loose fitting.

~I make sure that everyone uses the potty before we go because my daughter often has tantrums, bites, or runs around out of control if she has to go. I even offer chocolate if there is resistance.

~We have a wide variety of shoes to choose from for my daughter. It depends on what she feels comfortable in on any given day. She has several pairs of sneakers that all have Velcro closures. Two pairs of the sneakers are a size too big and one is the right size. She also has two pairs of dress shoes. One pair has no buckle and it is a size too small. The other pair has a buckle and is the correct size.

~I use two kinds of sunblock. The aerosol spray is the quickest to cover all over and is our favorite for the body. The sunblock stick is great for the face because it doesn’t drip into eyes and the kids can apply it without my help. The last choice is the regular lotion kind. My daughter only tolerates the lotion, so I keep a bottle of it around if we’re in a pinch.

~The kind of hat that I have the most luck with keeping on my daughter is the fisherman type hat. They are loose fitting and have a good size brim.

~Sunglasses are often too dark. I buy the kind that have pink lenses instead. They still provide UV protection, but they don’t make the world completely dark.

~I pack snacks of various textures. Pretzels give a good crunch. Bananas are mushy. Raisins are chewy. I also bring water in a cup with either a straw or a valve. Sometimes I even bring chewing gum.

Maybe these tips will help you enjoy the warmer weather with your child with SPD.

Swimming lessons have begun! We took two rounds of lessons last year and decided to take a break. C4 was terrified of the water last year and refused to put her face in at all. It was not worth it to me to force the issue, so we stopped. Besides, my goal is simply for her to be able to swim not for her to compete or anything like that. Waiting was the right choice! She had a great time today, and she wasn’t even nervous before the class started.

We arrived at the lesson early to allow the kids to warm up to the situation. My kids adjust better to anything new if I explain what will happen and answer their questions at the venue. It seems to relax them – and me. I also give important safety information. For example, today we talked about the life guard’s job. I also explained that they might hear a whistle blow, and three blows mean that the life guard wants to clear the pool. My kids are so curious, and they are pretty independent thinkers. They often question the authority figure when they are told to do something that appears confusing. That kind of questioning seems defiant to some adults even though the questions are not to meant to defy authority. I try to avoid having that happen, especially on the first day of a class.

I saw my little girl actually swim from the side of the pool to the rope and back again with the barbells. She splashed in the water. She even went down the slide into the pool. She smiled the whole time, too! She did check with me throughout the class, but there was no sign of distress. What progress! I am so glad to see her enjoy the water now.

Wednesday is A2′s turn with her very first lesson with Mommy. I’ll keep you posted!

Photo courtesyof  bonsaihiker

Here is another glimpse into the realities of SPD.

~It can be difficult for our family to go to new places. C4 does best if I can prepare her for what to expect. We tend to go over the details of what will happen and who will be there. If I don’t know what to expect, I can’t prepare myself for what might happen while we are there. She also needs help to transition into the new place.

~I have to monitor the children very carefully when we are home. If I don’t, I might find that they have gotten into some awful mess. I have found many messes that are difficult to clean up because I stepped out of the room for a brief moment. One time the kids found a Sharpie pen and used it as make-up. Yes, it was all over their faces, including their eyes. (By the way, you can get Sharpie off of skin with toothpaste.) I have also found toothpaste smeared all over the bathroom. Not to mention all of the things A2 has decided to drink or eat.

~I often feel like I am being judged because of my children’s behavior. In fact, sometimes my children’s behavior is wild and out of control. These outbursts do not always bode well with other folks. On more than one occasion my daughter has knocked over another child when she tries to give a hug or unintentionally as she walks by. I’ve had my child scream in a store and beg to go home because the lights are too loud and bright and she can’t stand to sit still for another moment. The looks people give used to make me feel ashamed. I have finally realized that my children’s behavior does not reflect on my ability to parent. I did nothing to cause these behaviors. My kids came into the world this way, and it is my job to help them cope with situations, feelings, and sensations that cause discomfort and, in some cases, pain for them. That is all I can do.

This post is the first in a series on the realities of living with Sensory Processing Disorder (SPD).

What does it mean to live with a child who has SPD?

We have to keep things hidden and locked up, and putting things up high isn’t enough because the children find ways to get to those things. That includes anything that could be consumed or smeared such as toothpaste, lotion, mouthwash, liquid soap, and bug spray. (My kiddos have experimented with all of these things.) We have to also lock up anything that could physically harm the kids like the electric shaver, glassware, and knives. This is all part of sensory seeking behavior.

There is a lot of crashing going on. C4 crashes into things or people. Sometimes C4 accidentally tacklesA2 when she tries to give her a hug. There is a lot of pushing and pulling, too. This is part of sensory seeking behavior. This has improved greatly for us with the use of our exercise ball and a few other activities that give proprioceptive input (deep pressure).

Getting dressed can be incredibly difficult for C4. She wants to be naked under a blanket when it is time to get dressed. She is also fussy about her underwear, tags on her clothes, and the waistband on her pants. We finally have underwear that she likes and a select few outfits that she finds comfortable. We have made major progress in this area, though. Now she will actually play dress up whereas in the past playing dress up meant undressing. This is all part of tactile defensiveness.

Loud noises make a raucous in our home. Vacuuming causes C4 to run around the room or jump on the couch. The neighbor cutting the grass can also set her off. The sounds don’t even have to be that loud to me for C4 to consider them too loud. The sound of the lights or someone across the room talking can be distracting or cause C4 to lose it. This is part of auditory processing.

Does any of this sound familiar to you? Go to Sensory Processing Disorder for a checklist of behaviors you might see in children with SPD.

Living as a mom of a child (or two) with SPD is challenging.

C4 has been going to the Occupational Therapist for Sensory Integration Therapy since September, and the results are amazing! This past week her therapist began implementing the Alert Program (AP) with her. They use the idea of your body working like an engine. She asks C4, “How Does Your Engine Run?” The idea is to help C4 become aware of how alert she is feeling and learning to use different strategies to help her make changes in her state of alertness. Her therapist describes it as feeling like Tigger when you feel very excited, feeling like Eeyore when you are feeling sluggish, and feeling like Pooh when you feel just right.

I like how this program is empowering C4. It is teaching her that she is in control and can actually DO something when she is feeling out of sorts. I think in the end it will make a huge difference for her. I am already seeing how she is willing to do something to make herself feel better when I mention that she is acting like Tigger. She even tries certain strategies on her own. I know that soon enough she will be able to self-regulate independently.

Living as a mom means watching my child learn self-regulation.

Photo courtesy of lemuelinchrist

Today was a monumental day. C4 went on a field trip with her classmates and went directly home with a friend afterward. I actually felt confident with the travel arrangements and that she went on a drop off play date. When I brought C4 home, she and A2 played together for over an hour while I put away laundry. This afternoon I only had to intervene a couple of times to help them work out a problem or two. Even just last summer this would not have been possible.

Just last summer I would have been reluctant to send C4 on a drop off play date. I would not have done the laundry without having the children right with me. Leaving the room would have meant rushing to finish and chancing a problem between the girls. What a difference addressing C4′s issues has made!

I am so grateful that we finally figured out that C4 has SPD and that she goes to OT. Now she is relatively calm, and we have ways to help her now when she is out of control. We are learning so much about what is happening to C4, and I am encouraged that we will be able to address those needs with success, too. I know that there is much more work to be done, but I am relishing the progress.

Photo courtesy of futureshape

Recently I have made mention of C4 having Sensory Processing Disorder (SPD), but I have not really talked about what that means to our family or even what it looks like. This might help you out if you think that something is going on with your child.

Having a child with SPD can be trying, confusing, frustrating, and down right depressing at times especially if your child has not been diagnosed yet. I can tell you that it was quite difficult to finally pinpoint the problem that C4 was having, and while we were furiously searching for an answer to the problem, there was a lot of strain on the whole family. It really affected my view of myself as a mother since I am a former teacher and have all of this education about child development.

Why was I unable help my child cope and keep my cool?

I avoided situations that would set C4 off. Staying home all day made it difficult for us both. We rarely stayed at home during the day, instead opting to visit friends for the whole day or we’d go on long walks to the playground and stay there for a long while. We were the only folks at the playground until late in November or early December. In the winter we went to the mall a lot. I had a few friends I would call to help me solve some of these problems, but they never experienced the same things I did. It was incredibly frustrating and stressful.

I noticed a problem as soon as C4 began walking – at 9 months old. She crashed into walls without even noticing. She never stopped moving during the day except to sleep, and she was definitely a good sleeper! She desperately needed the routine to stay the same or there were tantrums lasting up to an hour. Brushing her teeth and hair was torture and could involve a wrestling match and screaming (sometimes from her and me). Cutting her nails was equally difficult. It was as if she was in tremendous pain. Getting dressed was impossible. Although she was physically able to dress herself at 18 months or so, she would flat out refuse to put clothes on even if I gave her a choice about her attire. Potty training was a disaster involving serious tantrums if she had the urge to use the potty. She never actually told me that she had to go, but once she went on the potty, the tantrum stopped. She was also picky about the foods that she ate; she wanted her vegetables to be frozen and none of her food could be warmer than room temperature. She also had no tolerance for frustration. If she couldn’t figure out how to do something right away, she would have a tantrum. And biting was a huge problem, and it wasn’t always related to frustration.

I brought up my concerns about C4′s hyperactivity many times during our well baby visits. We talked about ADHD as a possibility, but my wonderful pediatrician did not recommend medication at such a young age, especially since she might grow out of some of the behaviors. (I brought up my concerns starting when she was about 12 months old.) It was not until C4′s 4 year old well child visit that we finally got a referral to see an Occupational Therapist with the pediatrician’s conclusion that it must be SPD.

Since we started with the OT in September, our life has changed dramatically. C4 has been more relaxed. I am more equipped to help her when she is having a sensory related problem. Now I feel like the whole family is coping better. It has been incredibly reaffirming to me as a mother to find out that there is something going on with my child and that it is treatable. Once treatment started, our family life improved, everyone’s stress level reduced, and C4 started to flourish, even asking to use different strategies that she find helpful.

If you think that your child may have SPD, please talk with your pediatrician about it. As a mother who had to work hard in order to find out what was happening to her child, I am urging you to do that for your child, for your family, and for yourself. Do not give up! You are not alone. For more information about SPD, go to the Sensory Processing Disorder Foundation website or go to the Sensory Processing Disorder Resource Center website.

Photo by re-ality

A major struggle for me is to keep myself and my family organized. I seem to have a terrible memory and have to write EVERYTHING down in order to remember anything. I have been diligent about keeping a calendar with all of our appointments, social events, and the like. E adds his information to it, too. I also depend on routine because that means that I don’t have to think about quite so many things. I seem to run on autopilot, which makes me more efficient with the mundane things that need to get done when you are living as a mom.

I am still running into trouble when there is a change in the schedule, though. This is particularly troublesome with our Occupational Therapy appointments. The schedule has changed with the holidays, and now I have missed two appointments. Technically that means that we should lose our slot, but the office manager showed me grace and allowed us to keep our space. Since it took 6 months to get into this OT facility for C4′s SI therapy, I cannot afford to lose our space!

I am appealing to all of those organized and seasoned moms. How do you keep it all together? I am barely keeping my head in the game, and when life throws me a curve ball, I get lost. I would love advice on how to be more organized.