Medical Update on the Kids

It seems like it is time to update here about the kids medical issues. If for no other reason, then so it all can stop swishing around in my head. There is lots of new information right now and I need to start compartmentalizing it.

*All of the pictures in this post are from blueberry picking recently. After blueberry picking, the kids enjoyed a very cold splash in a mountain stream.

Tim 23 ~ Tim has been an irritable person most of his life. However, in the past few years he has struggled more and more with irritability and frustrations over daily activities. Every little speed bump of life is like hitting a mountainside to him. We decided to leave conventional medicine (that was giving us almost no help) and look into alternative medicines. We had him tested for cortisone levels and tests to see how his adrenals were doing. The test results are back and indeed his cortisone levels are very high and his adrenals are not doing well at all. Testing of his neurotransmitters revealed that two of them are very low. These are serotonin and GABA, which help with happiness and a feeling of well being. The doctor started him on some new supplements, but she told us upfront that it might not be enough, since his brain is so badly injured. So far, he is complaining of having lots of trouble waking up in the morning. However, he has been functioning better and having more small pleasant moments than before. We are hopeful that this new protocol will help him over the coming month. We are also trying to stimulate more alpha waves in his brain and decrease the amount of his beta brainwaves. One way to accomplish this is by using classical music. We are playing lots of Bach around here right now. So far, I am seeing a little bit of improvement in mood while the music is on, but as soon as the music stops, he is right back to not feeling well. We plan to purchase Wild Divine soon. Our psychologist has been suggesting it for years. Now we are going to take the leap. It should be useful to multiple people in our home.

We are also exploring changing Tim's diet a bit. He has a latex allergy and we found out that there are several foods that cross-react with latex due to having the same or similar latex proteins. One such food is bananas. He has been allergic to them for years. Now that I see the list of what other foods he might react to, I am realizing that he already avoids some of them because they make him feel bad. It seems like this could be contributing to his mood as well.

Furthermore, we needed to get him a psychological evaluation to keep him at the brain injury program he is now attending four days a week. The results are not back yet, but the psychologist wanted to tell us about his IQ. The verbal part of an IQ is very noticeable when people interact to people because it includes vocabulary, sentence structure, comprehension and carrying on a conversation. Tim has a very high verbal IQ in the superior range. However, the rest of the scores that make up his IQ are in the low average or even below. With such a high verbal intelligence, Tim is able to speak with complex vocabulary and comprehend what others are saying even in a complicated conversation. This explains why there are people (such as the teacher he was having trouble with recently) who think there is nothing wrong with him and accuse him of not applying himself. It takes longer to realize out that he processes information slowly, has a terrible working memory, and has very poor math skills. All of this combines to make it difficult for him to navigate his world, to manage time or even remember his phone number. So when the experts average out his IQ it really cannot reflect Tim's abilities at all. In fact, the doctor said that Tim falls into a very narrow category where the IQ test is useless. In some ways, this is a relief to know. However, it reinforces why he is so frustrated and overwhelmed with life.  Lots of work to still do here with my oldest. I am hopeful that we are on the right path now.

Goldilocks (12) ~ Where to begin...Goldilocks continues to struggle with behavior. She is always creating chaos but complains to anyone that will listen about how her family isn't calm enough and that she hates chaos. When she is in respite care, however, our home is amazingly quiet and calm. Some of the experts think she is exhibiting RAD behaviors (which she has a diagnosis of) and others think her PTSD is being triggered by having to live with her birth brother Tom Sawyer (children who were abused in their birth home and then adopted together often have lots of sibling adoption issues). An additional possibility is that she is showing signs of borderline personality disorder, which her psychologist thinks might be true. Her birth mother has this diagnosis. People with borderline are easily bored and crave chaos/excitement and will create it if it is not present. No matter what is causing her issues, it is very hard to live with at times. We are having a terrible time finding a therapist who we can afford and is also the right fit. Mental health services in the state of North Carolina are very poor. The special needs family support network in our area has given me some places to contact to try to find some funding. I have found some horseback riding psychotherapy in the area which I think would be a good fit, but it is $100 an hour. When you are talking about $100 an hour, funding quickly becomes a major issue. She is still receiving neurofeedback, which is supposed to be calming and improve her processing. However, the doctor doing neurofeedback says it will take YEARS to see improvement. I am not sure I will continue this if I find a good therapist that our insurance takes. We will only be covered for one or the other.

This is a very typical pose of Goldilocks.
I am at a loss as to why she curls her hands this way.
Has anyone ever seen this or know why?

We are waiting for our insurance to catch up with the recent change in pediatricians. Once that goes through, Goldilocks will be having an echocardiogram to begin figuring out if she has Marfan Syndrome. This diagnosis will help us know whether or not the dizzy spells are something to be concerned about.

On a very light note ~ She is ready to start round two of braces and will also need the penguin to help expand her jaw line.

Tom Sawyer (11) ~ Tom Sawyer seems to be making a vast improvement in tolerating foods that he hasn't been able to eat in several years. Lately, he seems to be able to eat organic, unbromated wheat flour if he is given GlutenEase (made by Enzymedica) a supplement. He still reacts to barley. Many of the wheat flours in the store include barley with them, so he can't eat wheat products prepared by stores or restaurants. He does experience stomachaches if he eats wheat without GlutenEase, so we still may need to look into Celiac Disease. His doctor who follows his allergies suggested that he should be tested but didn't want him to go back on gluten to find out. However, I think it would be worth knowing if the tests are not too dangerous or invasive. He does not want to remain gluten/grain free for life if his digestive system could be cured. He continues to take l-glutamine, vitamin C, PB8 probiotics and digestive enzyme supplements to promote digestive health. To our relief, he seems to be handling all food better with less hives, redness, skin issues and behavior issues. He still looks very pale most of the time and complains about exhaustion. I am interested to see what our new pediatrician thinks about his food issues. He seems to be filled with fresh views on what might be going on with the kids.

The dentist is sending Tom Sawyer for an orthodontist evaluation. We knew this was coming for a long time. His teeth are crowded and his chin is starting to recede (just like his biological sister). He has always had very thin and deformed enamel on his teeth which increases the chance of infection and complications. He has already had dental surgery for a growth in his mouth a few years ago. We are concerned about how to keep him healthy through this process. Fortunately, our orthodontist has done a great job with Goldilocks and says he has lots of ways to help Tom Sawyer with his sensory issues.

Tom Sawyer, who has mild cerebral palsy, is nearly finished with physical therapy at this time. While he needs more, our insurance will only cover 16 sessions a year. Consequently, the physical therapist is giving him a list of exercises to do at home so that he can keep making progress (that is, if I can make him do them often enough). He finds physical therapy very painful and it brings him to tears. Still, Tom Sawyer has made amazing progress and can do many things that he could not do at the beginning of this Summer. He can sustain his energy level better and keep up with other children for longer periods of time. I am hoping that the special needs gymnastic class he recently started will help him keep working on his trunk and legs.

We will be looking into an occupational therapy evaluation once PT ends in a couple months. Writing is such a struggle for him. His hands tremor and his whole body tenses with the process. The physical therapist said he is having trouble because his core is so weak and recommended that an occupational therapist could help with fine motor as well as some gross motor. In this way, he can continue getting help for his core while working on the smaller muscles in his hands as well.

Little Red Riding Hood (9) ~ There is really nothing to tell here. She is by far the healthiest and easiest child I have. She struggles a bit with balance when dancing (more than she should after so many years of dance). This is probably because she inherited a mild case of pigeon-toed walking, which would be of little concern if she wasn't interested in dance. We are in a holding pattern to see if the dance studio thinks she should return for a few more sessions of PT. She starts dance classes again next week, so we will see then what the teachers think of her progress over the summer. She has done lots of yoga, standing on her toes, and other balance work to improve her balance.

Well, there is an update.

Blessings, Dawn

Therapy Thursday ... The Alert Program

This week Tom Sawyer is learning step one of the Alert Program. The Alert Program helps children understand how their "engine" runs and how to calm or alert themselves to get to feeling "just right". Also, for a child like mine who thinks that "just right" is a bit chaotic, this program helps them retrain themselves to more normal levels. Because Tom Sawyer was born addicted to crack and had exposure to other unknown drugs in utero, he feels "normal" at a much more chaotic internal state and desires constant stimulation. This ends up appearing ADHD or autistic, even though he is not. For example, he can be spinning or bouncing his sister's ponytail and when asked how he feels he says, "just right". For the next week, we will be asking him how he feels based on the below chart. We will then record how he feels and how we think he feels. The next step will be getting his body used to what calm feels like. 

One stimulation we have added to our home to stave off his constant sensory deprivation is a rice bucket. He sits in the bucket filled with 50 pounds of rice and plays with toys or spoons while listening to a book on tape or during family chapter book time. He is retaining more and is much less disruptive. It is a win-win for everyone. He can also sit in the rice with a clipboard and do his math or grammar page. Being in the rice gives many of the pressure points of his body input and helps him feel more centered.

Interestingly, he feels a bit uncomfortable in what we would call a "just right" state. He is not used to it, so we can see him trying to rev his engine to what he thinks is normal by spinning or leaping about.  When this happens, we have to give him more sensory input to keep grounding him. This is exhausting for his parents, since at this time he needs input every 15 to 20 minutes. However, every minute we can keep him in the proper just right state will become more normal to him. In time he will learn to desire the normal, just right state. 

Blessings,
Dawn

Therapy Thursday ... A Calming DVD

Our local hands-on museum always has the DVD, The Way Things Go, playing.  Ever since my son was a little baby, he has been mesmerized by this show. This amazing show is a Rube Goldberg machine in action.  The creators use fire, water, chemistry and gravity to make an exciting chain reaction of events. This is a fun DVD for the scientist/theater artist in all of us. However, it has a special calming effect on some of our special little guys. My son has never been diagnosed with autism, but he does have severe sensory processing disorder, which we have been told often looks like autism. When I had the opportunity to buy this DVD recently, I was talking to the staff at the museum. They told me that other families with kids on the spectrum had found great success with this DVD. They had a few amazing stories.

It certainly has calmed our son whenever he has watched it. I have no idea why it works so well. As I have said in the past, calmness is our theme word this year. With that in mind, we decided to hire one of our son's favorite Tomatis workers. She will be coming into our home 2 to 3 hours a week to help us make a better sensory diet for him. On her first day with us yesterday, I got more ideas than in the past 20 years living with two children with sensory processing disorder. I am so excited about her coming and getting us on the road to a calmer lifestyle! She said we had tons of tools (trampoline, balls, balance board, putty...) in our home, so it is just a matter of learning how to use them to help him more. We will be taking a long break from Tomatis. I have not seen any major gains in the last few loops, and I think we need to explore some other options for awhile. I have a feeling that having this worker in my home is going to make huge gains for us. I will be posting what we learn.

Blessings,
Dawn

Therapy Thursday

This is a special story that my Mom sent me... a timely reminder for those who are in the trenches with special needs or just happen upon them now and again. This is tender and so true!

BLUE ROSE

Having four visiting family members, the wife was very busy, so I offered to go to the store for her to get some needed items, which included light bulbs, paper, towels, trash bags, detergent, and Clorox. So off I went.

I scurried around the store, gathered up my goodies, and headed for the checkout counter, only to be blocked in the narrow aisle by a young man who appeared to be about 16 years old. I wasn't in a hurry, so I patiently waited for the boy to realize that I was there. This was when he waved his hands excitedly in the air and declared in a loud voice, "Mommy, I'm over here." It was obvious now, he was mentally challenged, and also startled as he turned and saw me standing so close to him, waiting to squeeze by. His eyes widened and surprise exploded on his face as I said, "Hey Buddy, what's your name?"

"My name is Denny and I'm shopping with my mother," he responded proudly. "Wow," I said, "that's a cool name; I wish my name was Denny, but my name is Steve."

"Steve, like Stevarino?" he asked.  

"Yes," I answered. "How old are you, Denny?"

"How old am I now, Mommy?" he asked his mother as she slowly came over from the next aisle. "You're 15 years old, Denny; now be a good boy and let the man pass by."

I acknowledged her and continued to talk to Denny for several more minutes about summer, bicycles, and school. I watched his brown eyes dance with excitement because he was the center of someone's attention. He then abruptly turned and headed toward the toy section.  

Denny's mom had a puzzled look on her face and thanked me for taking the time to talk with her son. She told me that most people wouldn't even look at him, much less talk to him. I told her that it was my pleasure and then I said something I have no idea where it came from, other than by the prompting of the Holy Spirit.  

I told her that there are plenty of red, yellow, and pink roses in God's Garden; however, "Blue Roses" are very rare and should be appreciated for their beauty and distinctiveness. You see, Denny is a Blue Rose and if people don't stop and smell that rose with their heart and touch that rose with their kindness, then they've missed a blessing from God.

She was silent for a second, then with a tear in her eye she asked, "Who are you?"  

Without thinking I said, "Oh, I'm probably just a dandelion, but I sure love living in God's garden."

She reached out, squeezed my hand, and said, "God bless you!" and then I had tears in my eyes.  

May I suggest that the next time you see a BLUE ROSE, don't turn your head and walk off. Take the time to smile and say "Hello." Why? Because, by the grace of GOD, this mother or father could be you. This could be your child, grandchild, niece, or nephew. What a difference a moment can mean to that person or his/her family.

From an old dandelion!

Live simply. Love generously. Care deeply. Speak kindly. Leave the rest to God. People will forget what you said, people will forget what you did, but people will never forget how you made them feel.

Author unknown

Blessings, Dawn

Therapy Thursday ~ The Great Outdoors

My kiddos do so much better outdoors than indoors. When Timothy was just an infant and cried almost every waking hour (cardiologists said he was doing this to keep his damaged heart pumping), one of the only ways to calm him was to take him out on the apartment balcony and let him feel the breeze and see the trees. To this day, Timothy prefers the outdoors. He says it isn't noisy outside. Tom Sawyer was the same way about the outdoors as a baby ... well, as long as you didn't try to put his bare feet down in the grass. Then he would pedal his feet and scream until you picked him back up. Tom Sawyer also calms down if we go on a walk or he swings on the swing set.

This past 2 weeks all of the kids have been squabbling endlessly. On a normal day, they squabble way too much for my only-child self. But the past 2 weeks have been worse than usual. The heat has also been unbearable, so there has been very little time outdoors. But today the weather is wonderful. The sun is shining and there is a perfect breeze. For the better part of the last 5 hours, the kids have been outdoors playing TOGETHER. It is such a nice sight to see. I am glad that we are home together to be able to spend this time building relationships. I asked Tom Sawyer, my Sensory Integration Dysfunction child, what he likes about the outdoors. He said it is fun. I pressed him to tell me more and he said he liked how soft the sounds were outside. Also, he likes the breeze. I pointed out that he hates the fan indoors. He said the breeze is different.

Here's to breezy, sunny days where my kids can be at peace in their tree house. It is so nice to see them enjoying themselves and to see my Tom Sawyer actually being a flexible child in his play. Often, much of the trouble in this threesome is Tom Sawyer being a very bossy playmate.

These two are often at odds.  Here they are reading a book together.

Blessings, Dawn

Therapy Thursday ~ Clothing

The child who avoids ordinary sensations or seeks excessive stimulation, whose body is uncooperative, whose behavior is difficult, and who doesn't "fit in" is our out-of-sync child.  For instance, he may have a tantrum because the tag in his shirt scratches his skin-or he may not notice that his pants are on backward."  The Out-of-Sync Child Has Fun

One thing many parents notice with Sensory Integration Dysfunction (SID) kids is that they have a terrible time transitioning from season to season. My younger son, who has the diagnosis of severe SID, really struggles as the clothes are changed to be appropriate for each season. It can take him half of each season to figure out which of his clothes are comfortable and this process is really stressful.

We are very blessed because a friend of the family hands down all of their son's clothes to us. This is great because it can take 20 outfits to find eight comfortable ones. Each year is a bit different.  Sometimes cotton is the way to go, and other years he does well with the satin-type sports pants. The only thing that has been consistent is his dislike of denim. Because we are so blessed with clothes, and I can never figure out what he will wear, his drawers look like this part of each season (half long sleeve shirts and long pants and half short sleeve shirts and shorts).

After watching and asking "how does that feel on you?" for a few weeks, I can sort his clothes and get him down to a manageable dresser. This afternoon, he and I sorted his clothes and determined which were uncomfortable. Those were put away for another year or to put in a consignment shop. The reject pile was very large this season.

What I have not figured out is why the texture of clothing changes year to year. Why is it that sometimes he can only deal with cotton and at other times he wants only sweatpants? There is still so much to learn about this. But at least for now, everything in his dresser is comfortable, and his room is neat and manageable once again.

Blessings, Dawn

Therapy Thursday ~ Making a Comfortable World

"Since sensory integration disorder involves receiving and interpreting information from the senses and combining the information to form a well-rounded and accurate picture, problems with one sense can cause problems with all sensory input and output.  If your child is distracted by the way her clothing feels, it's going to affect her ability to listen and to see detail and to stay still.  If your child feels off-balance, it's going to affect the way she sees things, coordinates her movements, and hears what you are telling her."  ~The Everything Parent's Guide To Sensory Integration Disorder 

It is the little things that drive each of my boys crazy ... the way the hair on his legs gets caught in his socks with every step; the rotating fan coming back and forth across his skin instead of just being steady wind;  the feel of a hot pillow at bedtime that someone else has leaned against during story time; sticky sand that was fun when he was sitting in it playing but now hurts while he is trying to get it off; the way it is cold in the morning and hot by mid-day; how much it hurts to sit on the hard ground (it hurts his neck, not his bottom) -- all of these statements have been said by one or the other of my boys just in the last week.

Even though it is the middle of June in North Carolina and our days often end in the high 80's, my younger son is still putting on his winter sweatpants many days. Sometimes he even puts on a long sleeve shirt. My older son never wears shorts because he cannot stand the way the air feels with only part of his leg cool and the other part hot.

One way I have found to help my boys is with brushing therapy. My older son can brush himself and my younger son is brushed by me. Brushing the skin with a soft brush is an excellent way to wake up the skin and prepare to take in some sensory input. I took my youngest son to the store and had him feel many brushes and sponges. He picked a very soft one. We also have an occupational therapy brush.

Today we attempted our first children's outdoor concert. It was the library's Summer Kick-Off program. They had a local popular, positive kids hip-hop group. I must admit that, when I heard it was going to be hip-hop, I thought this was not going to work out well. But my friend insisted that this group was not to be missed. I packed snacks and gum to help Tom Sawyer be able to "chew" his way through the noise level. We also took several blankets so that he could curl up in them if necessary. I let him pick the spot where we sat and told him to tell us when it got too loud and we would move or leave. He started with us sitting outside the tent but still very close to the stage. Toward the end, we sat right next to the stage with our friends. Overall, he did very well and made it through 25 minutes of the music before he said we needed to leave. He had no meltdowns and only needed one piece of gum. He did not need to curl up in the blankets.

While he did not dance or show any signs of enjoying the concert, he did not cry or misbehave either. Hurray, a success!

When we were leaving, the kids were given free snow cones. What a special treat. I'm glad that everyone behaved and earned the right to such a nice treat.

Blessings, Dawn

Therapy Thursday ~ This Is My Box

I recently realized that I had dropped the ball when it came to doing home therapy with my SID (sensory integration dysfunction) kids. Somehow in my mind, I had decided that taking them to Tomatis every 2 to 3 months was enough. After all, both of them graduated from occupational therapy last year, so my work was done, right? Not so much! I put it out of my mind that SID is incurable and went on studying other issues my kids had.

My Tom Sawyer did very poorly on his reevaluation for OT and Tomatis a few weeks ago. I explained to his occupational therapist that he seemed to be at the end of his rope all the time and was often in distress. Tom Sawyer's meltdowns were increasing in length and he was having them five to eight times a day. His OT decided to increase his Tomatis program to every 8 weeks with 10 day intensives, and we are most likely restarting weekly occupational therapy (at my request).

This prompted me to reread The Out Of Sync Child Has Fun and work on creating a new sensory diet for my children at home. Both boys are diagnosed with severe SID and Goldilocks has some SID issues. On Thursdays, I will be sharing on this blog about what games and activities help my children. I thought I would start by sharing my indoor OT box.

I started my renewed journey with sensory integration by collecting frequently used OT/sensory items in the house and putting them all in one place. I found some things in closets that had not been touched in 6 months or more!! I then took my birthday money from my aunt and purchased this really nice trunk at Big Lots.

This is what is in the box so far: balance board, weighted 4 pound ball, thera-putty, shaving cream, popper, chewing gum, flashlights for vision therapy, pressure brushes, pressure vest, shoe with special laces, gym mat, trays and two books to help me. I will be adding a great deal more over the next few weeks, but this is a start.  I employed the sensory diet during most transitions yesterday, and I did notice an improvement.

Each week I will be posting more of what we are doing in this area. If you want to add your own ideas, leave them in the comment area or email me.

Blessings, Dawn