Friday, March 27, 2009

Not Prepared

Chalk it up to inexperienced parents. We took Nathan in to get his second allergy shot (he'll be getting one a week) and he had a really rough time of it. He kept yelling that he didn't know what to expect and he was NOT prepared. Sean took Nathan for me so I got to miss this round.

After it was over, they talked and Nathan agreed that it barely hurt at all and it was over really quickly. He no longer thinks it will be so bad to have a shot weekly. Sean tried to remind him about how we just had the first one a mere week ago at the DAN-doctor...but here's where our inexperience shows.

Nathan didn't remember getting a shot there. What?!? Cried and screamed for almost 5 minutes until we could hold him still long enough to get the shot in his arm. We talked about how brave he was for the allergy testing AND the shot the whole 3.5 hour ride home. Reminded him all week that he'd be getting one shot every week and how brave he was and how it hardly even hurt. I see how easy it is to forget...NOT!

Then we realized what he's trying to tell us in his own way. He's telling us that he doesn't remember much of that whole appointment. It's just too much for him to cope with, process and deal with that he's blanked out almost all of the 'bad stuff'. He is choosing to forget the bad and remember the good stuff. And I guess I'm glad for that, because he's still excited to go back in a couple months.

Maybe he's really teaching me a little something here. When I've had a rough experience, I tend to hold all the negative and dwell on it. I can bring up the anger and pain again and again---and sometimes I'll try to make the person who caused the pain pay for it, over and over again. Jesus said we should be like little children for His kingdom belongs to such as these. That's my life lesson for today. Remember the good stuff and block out the bad. I might not be prepared, but my guess is I'd be more loving. I know Nathan's got a lot of love to give. I know he lives every minute of life to the fullest. Yep, I guess I need to be more like my own little child.

Thursday, March 26, 2009

Chronic Pain linked to low Vitamin D

A sweet friend sent me this article regarding Vitamin D. I know it's important to boost your mood and that's why we were told to give it to Nathan. The doctor believes it will keep his emotions a little more balanced and that it will keep him from seeming 'blue' or 'a little depressed'. However, I found this to be a very interesting article. Maybe we all need to watch our Vitamin D levels.

She found this
article here, but I copied it below.

Chronic pain linked to low vitamin D
ROCHESTER, Minn. (UPI) -- U.S. researchers found a correlation between inadequate vitamin D levels and the amount of narcotic medication taken by patients who have chronic pain.

Researchers at the Mayo Clinic in Rochester, Minn., found chronic pain patients who required narcotic pain medication, and who also had inadequate levels of vitamin D, were taking much higher doses of pain medication -- nearly twice as much -- as those who had adequate levels.

The study, published in the journal Pain Medicine, also found the patients with the lower levels of vitamin D self-reported worse physical functioning and worse overall health perception.

"This is an important finding as we continue to investigate the causes of chronic pain," lead author Dr. Michael Turner said in a statement. "Vitamin D is known to promote both bone and muscle strength. Conversely, deficiency is an under-recognized source of diffuse pain and impaired neuromuscular functioning. By recognizing it, physicians can significantly improve their patients' pain, function and quality of life."

The researchers studied 267 chronic pain patients admitted to the Mayo Comprehensive Pain Rehabilitation Center from February-December 2006. Vitamin D levels at the time of admission were compared to other parameters such as the amount and duration of narcotic pain medication usage; self-reported levels of pain, emotional distress, physical functioning and health perception; and demographic information such as gender, age, diagnosis and body mass index.

Copyright 2009 by United Press International

Tuesday, March 24, 2009

More Blood Work

Took Nathan in yesterday for the fasting blood draws. Also got his urine tests done over the weekend and was able to ship those out. The only test left is the hair test. Need to do that on a night when we can take him for a haircut after we get what we need. Thankfully, he needs a hair cut so we should be able to get enough. Phew!

Here are a few photos of my brave boy after the tests. He has on his THREE badges of honor.

  1. Sticker with the alligator who says, "I had lab work done today."
  2. Bandage (We had to get a new one from the lab before we left as the one they gave us originally wasn't sticking any longer. He had to get another one to show his poke.)
  3. Wristband for the blood draw. (They offered to just let him put the sticker on his shirt, but he wanted the wristband to wear and show off.)
  4. Not easy to spot, but there's a belly full of yummy breakfast.

I forgot to take a picture of Nathan's feast. He chose scrambled eggs, bacon, a doughnut and a fruit punch slushie.

He figured out during breakfast that he could sing his breakfast to the Kindermusik song his sister sang last semester. She sang, "Milk & cookies, milk & cookies, yummy in my tummy..." Nathan sang, "Eggs & bacon, eggs & bacon, yummy in my tummy. Doughnuts and slushies, doughnuts and slushies, yummy in my tummy."

Friday, March 20, 2009

Our Visit to a Bio-Med Doctor

We received a recommendation to take Nathan to a DAN-Doctor. DAN is the site which is a spin off of the Autism Research Institute. They have special training for those interested in learning more about how to help and treat children with autism.

There were DAN-certified people closer, but it was recommended to us that for our needs, we see a person who was a full MD as well as DAN-certified. We need someone who will use medical testing combined with DAN-testing to give us a full picture.

Prior to going to the doctor, we were able to get a good chunk of the blood work done here at home. Our primary care doctor is working with us and ordered the tests so we could get them done here in-network.

Some of you asked what we had done. We did:
  • CBC
  • CMP
  • Vitamin D
  • Vitamin A
  • Lipid Panel
  • ASO titer
  • DNaseB titer
  • Thyroid (free T3, free T4, TSH, resverse T3, anti TG ab, anti TPO ab)

We brought home the following kits and will have these done prior to our next appointment. Some of these have to be done fasting and you need the kits because they aren't traditional western medicine.

  • Amino Acids (both plasma & urine)
  • Organic Acid
  • Food Panel
  • Essential & Metabolic Fatty Acid
  • Hair Analysis

When going over Nathan's history, we mentioned the ear infections and two sets of tubes. He immediately said, "Oh, so Nathan's got a milk allergy?" We said no, we think he's a little lactose intolerant because he tends to avoid milk products. The doctor told us, "No--the number one cause of ear infections in infants is a milk allergy. He's allergic to milk." Then when we did the scratch tests for allergies, he was allergic to milk. If I would have known that, we could have done something about it 7 years ago (or 11 if you think about his brother having two sets of tubes).

Out of the testing that had been done, he discovered a fairly significant deficiency in Vitamin D, a little deficiency in Vitamin A, he's not producing enough Selenium and his cholesterol is too low and he prescribed a type of cholesterol.

To get enough Vit. A & D, he told us to give Nathan Cod Liver Oil daily. This would be from fall through spring each year. He thinks it will help with the depression-type of symptoms and helps other kids who are aggressive to calm them. Especially since Nathan isn't drinking milk, he doesn't get enough A & D when it's winter and he's indoors. We will get a specific type of selenium capsules to give him as well.

He did allergy testing and found Nathan to be allergic to most molds, most household pets (Mom said, "Yes--NO DOGS!!"), most seasonal allergen plants and lots of trees. He started Nathan on allergy shots and we'll get those weekly for now. The goal is to build up Nathan's immunity to the allergens instead of treating the symptoms. Their philosophy is to treat the cause, not the symptoms.

We discovered prior to doing the allergy testing that Nathan's sinus and nasal passages are about 50% blocked and one ear is 'plugged' and one ear has fluid (not infected) in it. We thought he was doing so great and 'normal.' The nurse was so concerned about how bad he was doing and we thought he was great. She thinks in the next 4-6 months of allergy shots, we will start to see a new child in his breathing and energy.

We're taking sort of a shotgun approach to everything we've been learning. We're working on everything at once and trying to maximize the benefits to Nathan. He was scared of the skin tests because the last time we did it (at a local allergy clinic), they did individual scratches. At this office, they have a rack of plastic scratchers that do 8 at one time. He only had to have 6 push scratches since she did two racks at a time (one in each hand). It was over so much faster and he was so brave in his fear. Then to give him an allergy shot was hard. He did so well and we're thankful to their office! Since they work with so many autistic children, they were good at waiting and helping us explain and calm Nathan down.

Nathan got to pick dinner. He was thinking McDonald's (again), but when we mentioned Cracker Barrel, he took us up on that. He & dad got to play checkers without having to take turns with a brother, and he got to pick anything he wanted from the menu. (Biscuits and eggs with some of dad's pancakes.) Mom chose chicken & dumplings (what else?). We agreed that when we go back in two months, we'll go a little earlier so we can stop at the McD this time and play a while. We even wrote down the exit so we're prepared.

More will be coming for us, but we got a running start at it. I'll try to post this weekend about some of the bio-medical findings regarding autism.

Monday, March 16, 2009

Vision Therapy

Along the way, we've received a lot of, 'Ah-ha' moments. One came with our oldest son when he was complaining that reading was difficult at school. We had been warned that he might need glasses for his mild farsightedness with the increased reading in middle school.

When we took him in to check the prescription before getting glasses, the optometrist discovered he didn't really need glasses. He needed vision therapy. In his case, he has Convergence Insufficiency. When he looks at the tip of a pen held out in front of him and brings the pen towards his nose, we should see his eyes cross. She expected him to get within an inch of his nose. About 3-4 inches away, his eyes suddenly POP to looking straight forward instead of continuing to cross. Each repeated attempt finds the pen farther away. It's a muscle problem and we need to get the muscles improved. Our optometrist informed us that this is one of the best eye problems to have since it is curable. We don't correct the problem with glasses, we cure it with vision therapy.

If you find out your child needs vision therapy, we found has great information and a provider list.

Here's a list of
signs and symptoms found on the website:

Physical signs or symptoms

  • Frequent headaches or eye strain
  • Blurring of distance or near vision, particularly after reading or other close work
  • Avoidance of close work or other visually demanding tasks
  • Poor judgment of depth
  • Turning of an eye in or out, up or down
  • Tendency to cover or close one eye, or favor the vision in one eye
  • Double vision
  • Poor hand-eye coordination
  • Difficulty following a moving target (my addition: like a pen tip)
  • Dizziness or motion sickness

Performance problems

  • Poor reading comprehension
  • Difficulty copying from one place to another
  • Loss of place, repetition, and/or omission of words while reading
  • Difficulty changing focus from distance to near and back
  • Poor posture when reading or writing
  • Poor handwriting
  • Can respond orally but can't get the same information down on paper
  • Letter and word reversals
  • Difficulty judging sizes and shapes

A couple notes that we watched for after getting the initial diagnosis. We watched his eyes as he worked on a worksheet. He kept moving in his chair or getting closer/farther from the paper as he worked. He was adjusting his focal point to make up for the lack of muscular development in his eyes.

We take the oldest one in two weeks to confirm whether he needs therapy or not. I'll keep you posted.

Friday, March 13, 2009

Newsletter for 2E Parents

My sweet friend (and author), Cheryl St.John, posted about my site on her blog. She was helping me spread the word to find more parents needing resources and help. One comment came back from the founder of a 2E Newsletter.

Linda (co-founder) writes, "After raising two 2e children and struggling to find information and get help, my husband and I created a publication for parents and teachers to help them understand twice exceptionality, 2e: Twice-Exceptional Newsletter. We've been publishing for 5 years and also have a website and send out a free monthly email briefing on 2e topics. We're working to spread the word, and little by little the awareness of who these children are and what they need to thrive is growing."

To learn more about this publication and the subscription costs, visit their website at
I've read the samples online and a teacher at school has given me articles that apply to us from her subscription. Their newsletter has experts writing articles for them and great technical information. A lot of the information is great to help educate teachers regarding a 2E child and the unique needs they bring to the classroom.

Wednesday, March 11, 2009

Quick Tips

I'm going to start posting "Quick Tips" as I come across them. If you search for "Quick Tips" at the top of the page, all of the tips will show up there.

Today's tip is pencil grips:

Who knew that 2E kids are notorious for incorrectly holding their pencils. Half the time, they hold pencils in a somewhat painful (or cramping) position. There are several types of pencil grips out there. We believe the best grip is the "Star Grip". Available at our local teacher supply store for a whopping $0.39 each, it's a bargain! For right handed children (ask for left-handed instructions), slide the pencil at the downward pointing arrow. The thumb is placed on the star and the other fingers naturally go where they should.

We also got these totally awesome pencils, the Pen Again Pencil. It's Y-shaped design corrects grips. Besides that, it's totally cool looking and the space aged look makes it a popular pencil among the kids. It made my 2E the 'kid with the cool pencils' instead of the only one forced to use a grip. We found ours at Staples or you can order online. There is a back order that is expected to start filling in April 2009. (The shipment is being held up at the customs port.)
Better finger placement is rapidly taking tears out of writing and homework assignments. He still has a strong aversion to handwriting, but we've noticed a huge improvement within the first week of purchasing these products.

Thursday, March 5, 2009

What is Twice Exceptional?

Twice Exceptional (2E) is defined more easily when we consider the following:

  1. Gifted: High Abstract Reasoning
  2. Learning Disability: There's many ways to define a learning disability--IQ/Achievement Discrepency (Autism falls here), Speech & Language, Mental Health Disorders, Behavioral & Developmental Disabilities, Other Health Imapairments (ADD falls here)
  3. Twice Exceptional: Gifted and Learning Disabled Child

In a nutshell, a 2E child is one who is gifted and has a learning disability.

Wednesday, March 4, 2009

Nathan's 2E Story

Originally, I would have said 'our 2E journey'. However, after a conference last week, I'm discovering that there's a strong case for Andrew as a high-functioning 2E (but I'll leave that story for another day).

Nathan's story goes back to infancy when he had repeated ear infections and had to have tubes around the age of 15 months. Those tubes became clogged and had to be replaced about 15-18 months later. We now know that fluid on the ear can cause hearing problems and that antibiotics thicken the fluid of the ear making hearing a little more difficult while on antibiotics. He always seemed speech delayed, but every time we had him tested, he came back as slightly behind, but not enough to qualify for services.

Our preschool has a fantastic program for kids like Nathan who are 2 1/2 in the fall. They have "Toddler Friday" where the kids go to preschool each Friday. It gets them into the school routine and it made Nathan feel 'big' like his older brother who was already in school. At preschool, I noticed right away that he never played with the kids, it was next to the kids. Parallel play is still considered OK at that age, but he was the only one. It bothered me---a lot.

The following year in a normal two day a week class for 3 year olds, we still had parallel play. He only interacted with the kids if their play crossed into his. We always joked that Nathan's world is this big circle and the real world only intersects a small corner of it. (See the diagram at the left.) If you happen to catch Nathan while he's in the 'real world' corner, he's a lot of fun. Otherwise, he has a great time on his own.

By the time he went to preschool three days a week at age 4, Sean & I knew there was a problem. We knew that if you look at a room full of kids, you can always spot that one kid who is just a little 'different' or a little 'off' of the other kids. It was OUR kid!!! He was having terrible transition issues at school and home. He cried everyday when I left him, he cried when I picked him up, he cried over things during school that we didn't understand. He would wake up in the mornings before anyone else in the house was up. He'd sit on the couch in the dark by himself and cry. I'd rush to him to see what was wrong and he'd say, "Nobody likes me." I couldn't even convince him that I liked him--and I'm his mother. I felt very hopeless and as much as I'd reassure him of every person who loved him, we'd have the same thing happening week after week.

I called our doctor and took him in. I didn't know what else to do. I knew there was a problem and I had nobody else to turn to. The preschool agreed there was a problem, but they hadn't seen it before either. They loved him to pieces and he was so bright that we couldn't understand what the issue was.

God bless our doctor who listened to a heartbroken mother and immediately sent us to a pediatrician in town who specializes in diagnosing Autism and Autism Spectrum Disorders. We thought Nathan might have Asperger's Syndrome, but he does not. He was diagnosed with Semantic Pragmatic Language Disorder (SPD) which is a British diagnosis that is not accepted in the USA by all psychologists. The American Psychiatric Assoc. does not recognize it because it was discovered by the British. So it puts Nathan on the Autism Spectrum--but because the APA doesn't recognize it, the school district wouldn't accept it and he did not qualify as Autistic. Again--no services.

We took her recommendation for counseling and saw a Psychologist for almost a year. We'd take him with us after preschool and go see Dr. Karen. She mostly worked with Sean & I on ideas to help Nathan out. She had some great insight into his need for structure and warnings. We started practicing making him leave a puzzle before he was finished putting it together so he could practice interruption at home. We did lots of role-playing. We would pretend what we would say if our teacher says this--we say this.

In the course of all of this, we had our third child and decided to move to a larger home before Nathan went to Kindergarten. We knew that once he started at a school, we would not be able to move him to another school until 2nd or 3rd grade. We needed space sooner than that so we moved within our district to a larger home and different schools. Dr. Karen helped us transition him in the move as well. We waited 60 days to close on our new house and every day during that time, we drove by the new house at least once a day. Due to some findings on the inspection, we had to have some work done before we moved into the house. Every time we had workers in, Nathan & I were there looking at our new room and talking about our new house. By the time we were two weeks out from closing, he started asking why the bank was being mean and not giving us a key to our house. The move was a fairly smooth transition.

We let him go through Kindergarten without making much ruckus. I went up the end of the school year and met with the principal. I showed her all our documentation and she explained he didn't qualify for services. I knew that but we talked about how I felt the need to request a teacher for him--but I didn't know who to request! I didn't know any of the teachers names, let alone how they ran a classroom. We talked about what characteristics Nathan needed in a teacher and she made lots of notes. God bless her, too! She came through for us giving us a tenured teacher who has taught Kindergarten for many years. Our Mrs. P. wasn't flustered by Nathan and his outbursts and crying fits. She and the para Mrs. S. took Nathan under their wings and over time found a system that helped calm him down. In fact, to this day, if Nathan is extra upset--Mrs. S. will come to his room and take him on a walk around the building. They just walk around and talk about nothing in particular until he feels calm enough to go back to his room.

This year saw him get another structured and tenured teacher. Mrs. L. has been teaching for 14 years and has had great success with other truly Autistic children. We went in before school started and met with her. We talked about Nathan, his issues and what we've found that does and does not work. She had some great ideas as well and off we went. He likes Mrs. L. and school, but this year the work is a little more involved. While it's not too much for him because he's a very gifted young man--the pressure of the higher expectations started taking their toll on Nathan. His gifted teacher and classroom teacher got together with us and helped us start the process of trying to get him classified as Autistic.

It's amazing how a different school and a different school psychologist can make all the difference for a little boy! Our school psychologist at the new school sat down at the first meeting and said, "I've looked through Nathan's very fat folder. It seems you've had concerns about him since he was about 18 months old. I saw the SPD diagnosis and while that doesn't qualify in America as Autism, I just need to do some additional testing and write a letter explaining that SPD would be called an Autism Spectrum Disorder in the US. If his test results are consistent with an Autism Spectrum Disorder, we should have no problem classifying him as Autistic."

That's it....tests and a letter? Why couldn't the psychologist at the last school do that for us?!?! So we had him classified at school as Autistic. He received Speech and Special Ed. for the Autism and Gifted Services because he's gifted. Our district is looking into a 2E classification, but it's not yet in place.

We learned about the 2E classification last year at a parent seminar given by our local gifted association. We used that information as part of our basis for getting Nathan classified as Autistic by the district. Our journey continues on...but we're starting to find the resources we need to help us out. I haven't had success finding other parents of 2E kids on the web. Sean & I spent so very long floundering and trying to do the best we could for our kids. I'm creating this blog believing that if I can help one parent and one child find the help they need, I will be successful. I've prayed long and hard about putting our story on the web...but I know the Lord is directing me to do this. Somebody out there needs me and to hear my story...just as much as I need to hear their story, too.

I hope and pray we can create an online community for each other. A sounding board and a place for idea exchange. Let's talk about what is working and what isn't. Let's help each other wade through the 2E experience together. Let's lift each other up. Let's do it for each other...and more importantly, let's do it for our kids.

I can't wait to hear your story. Please email me at coolestmommy (at) gmail (dot) com or post a comment or subscribe and keep up to date with what is going on here.

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