Dyspraxic Journey

Author Archive: Rosa

Allergy Report & First Food Reintroduction

CB is 4 years old …

Life is going well here in our little household. Olem and I are both thinking positively and just enjoying life. It is easy to see how CB’s behavior can be quite linked to our moods and reactions. CB is having a great week at school. I guess the aggression last week was either tied to the return to school after our trip and/or the reintroduction of fish oil after a 5 day break due to our little vacation. CB is still a bit off. His therapists mentioned that he did a good job and performed what was asked but that he struggled more and seemed more foggy-headed than he has been lately. When things like this happen, we immediately start looking into what is going on with him outside of therapy to see if there is a logical or easily-identifiable reason. CB is experiencing some seasonal allergies which may be contributing to these struggles. We now think the rash on his bottom is potentially linked to his seasonal allergies. We also found out he has to wear non-elastic underwear. The elastic irritates his skin.

We got 90% of his allergy report back and were pleasantly surprised. He only showed an allergy to mold (indoor and outdoor) and a borderline potential for a peanut allergy. Olem had allergy shots as a kid and was allergic to a long list of things so we really expected to see similar results for CB. CB’s nutritionist had recommended back in January that we hold off performing an allergy test b/c she felt the report would show a lot of false positives since his nutrition report showed several vitamin deficiencies and the selective IGA deficiency. I posted more about that at my Current Diet and Supplements post. Since his latest nutrition report showed that his body is in a much improved state, we decided to move forward with the allergy report.

We reintroduced plain whole milk yogurt (first casein protein introduction) yesterday into CB’s diet. He had a small amount yesterday afternoon and a small amount this afternoon. So far, he hasn’t shown any noticeable reaction. We really hope he can have yogurt again. We think CB for sure had, and potentially still has, leaky gut issues. Since his body is no longer reporting malabsorption issues, we thought it would be a good time to start reintroducing foods. We know the modified diet has helped, but we don’t know 100% why or what specific components have helped his body. Our plan is to reintroduce foods slowly, monitor CB’s body, emotional, and physical response, and have another nutrition report performed in 6 months. Hopefully, we will see some changes in one form or another that tell us when his body is having problems with a specific type of food. By performing the nutrition report in 6 months, we will be able to see if any vitamin deficiencies or malabsorption issues have returned.

Positive progress: CB stayed dry all night and urinated in the toilet on his own first thing in the morning. His sleep was very interrupted last night b/c of his younger brother. There is the chance he didn’t get to sleep as deeply and was able to control it better. Still, it is a great step for CB! Also, CB’s vestibular system is integrating more fully. He requested more types of swings during OT and at the pediatric therapy play gym and seems way more comfortable.

 

May 14, 2015 Allergy, Diet, & Supplements, , , , , 0 Read more >

The Little Light Switch and Nutrition Report Update

Just like everyone, CB has his on days and his off days. Well, lately his behaviors have been wavering quite a bit so it is more like he has his good moments and bad moments. Yesterday during his OT session, he was so positive and took everything head-on. He laughed while working with the OT on the spinning board. He actually was laughing. Just a few months ago, he was super scared and required the security of the OT riding with him just so he could tolerate it for a few spins. Whatever the OT suggested, he was on board and didn’t put up his usual walls. Most of the time for CB, his first reaction to any suggestion is no. He immediately jumps to the “I can’t do it” mentality and gets frustrated from the get go. We are currently working with him to try to shift his perspective, calm down, and try the task a few times before getting frustrated. So that was a very positive and “on” moment for CB. Today during swim class, he was totally off and sensory-seeking. He was moving the entire time and either splashing, putting water on a classmate, dumping over swim container baskets, or just not paying attention. He even was pretty off when he was in the water with his swim teacher. It is so hard to figure out what CB needs to feel focused and comfortable. Both his OT session and swim class immediately followed a nap so it isn’t like for one class he was really active beforehand and not for the other.

On another note, we got his nutrition report back and he is not vitamin-deficient anymore – yay! Now, he is still a little low on iron based off his ferritin and UBC levels, but the values continue to increase. His Immunoglobulin A levels have increased a bit. They are still low but he has moved out of the selective IGA deficiency range. We know he can produce some IGA, at least. He also had quite a low homocysteine level, slightly low WBC, slightly low carbon dioxide, slightly high vitamin e, and slightly high vitamin a levels. So most likely he still has some inflammation or bleeding. We still haven’t done the organics acid test b/c it requires the patient to not eat apples, pears, grapes, cranberries or their juices w/in 24 hours of providing the sample, and to pee in a cup first thing in the morning before eating or drinking. This is honestly too difficult right now to take on. We tried in early Jan and it was a disaster. Once CB gets in the habit of peeing in the morning before breakfast, then we will try it.

Tomorrow, if all goes well, CB will have his blood drawn for the food and seasonal allergy test. We know CB is allergic to processed soy and has seasonal allergies just based off observation. He is also battling a rash on his bottom, which appeared on and off for several months, and has shown symptoms like he may have some other food allergies. We will see if the test tells us much.

For a therapy update, CB’s ST has started incorporated straw therapy a week and a half ago. CB thrusts his tongue out when drinking from a straw. In regards to the PT developmental exercises I am performing at home with CB to work on integrating his retained primitive reflexes, this is a challenge. CB puts up a fight almost every time we perform the exercises. I need to work on a new strategy so it is not a battle. He typically doesn’t actually mind most of the exercises once we get started. It is the starting part that is so hard for him.

Glowing Glances: We visited a new park and a new children’s museum during a trip we took this past week and CB owned the playscapes. He climbed new play gyms that were not just like the ones he has seen at other parks. For CB, he has to perform tasks over and over and over before he can be successful at a task. Even then, he can forget how to do something depending on the day or environment. So it was so encouraging to see him be able to use his skills he has used in other contexts and apply them to new situations and environments. He also regularly says “of you or of ew” when prompted. Even though it is prompted, it still fills me with joy to hear him repeating the phrase “I love you”. Oh, and he regularly thanks me ” tank you or tank ew” for dinner and says “ih good”. 🙂

May 7, 2015 Allergy, Diet, & Supplements, Growth and Progress, Therapy, , , , 0 Read more >

Argh…this restricted diet is getting to me

CB is 4 years old …

CB is handling his restricted diet beautifully. He eats most anything we put in front of him, and responds well in situations where he can’t eat something his friend is eating. The generic “I’m sorry honey but that will hurt your tummy” response seems to work fine, at least for now. I am very grateful for this; however, for the last week or so, I keep imagining our family eating out wherever and eating whatever. I find myself hoping that his progress is not connected to his restricted diet. I picture a fridge full of full fat milk yogurt, cheese sticks, cream cheese, and ice cream. OK, can you tell I am missing milk products? I make our coconut milk yogurt, coconut milk kefir, almond milk, and on occasion we have Dayla cream cheese. They suffice but I really miss animal-based milk. I also imagine a time where I am not making so much of our food and we have a clean kitchen most of the time. I seriously am not keeping up with all the cooking AND keeping the kitchen totally clean. Maybe I just need to order a supermom cape. Once I tie the cape around my neck, I will instantly be the SuperMom I would like to be. One can hope!

So, within the next week, CB will have more bloodwork done to see how his nutrition levels are. We hope this will help us to see if the diet is helping his body, to ensure he is not having any new vitamin deficiencies, and to look at a few more factors we haven’t tested for before.

CB’s OT & ST started including the ILS (Integrated Listening System) as part of his therapy. With his first OT session with the ILS headphones, he was able to ride his balance bike (a bike with no pedals) smoothly down the hall w/no headphones on. After his OT put headphones on him, he was super wobbly trying to ride the balance bike down the hall. Surprisingly by the 2nd session, he was functioning quite well with the headphones on. His ST is also providing mouth and tongue tactile input to help him be more aware of the different parts of his mouth. This should help him to be able to move his tongue, lips, and jaw more independently. CB has this issue with his entire body. He has a hard time moving various body parts independently. His OT also performed some vision exercises with him immediately following spinning exercises. It is so good to see auditory and vision therapy being incorporated in his OT and ST sessions.

Glowing Glances: CB is stringing more and more words and more and more syllables together. Before swim lessons, HB was crying b/c he didn’t want to stay in the dressing room. CB’s first impulse was to hit HB so I mentioned that CB should instead tell his brother he was sorry he was sad or ask how he could help.  CB hugged his brother and said “I sorry your sad”. It was such a beautiful sentence.

Progress: CB has been dry for the past 3 days! We changed his potty reward system to reflect a new system where he gets a car if he stays accident free for a day. We made this change about a week ago. It looks like we now get to update it to be something like he gets a car if he is accident free for 3 days in a row. The interesting thing is that the point of the rewards system is to serve as a motivator; however, CB asks for a car about every time he uses the potty. He cries about 1-2 times a day b/c he wants a car then. I am pretty  sure he doesn’t understand our current system and just waits for us to tell him he has earned a car. He doesn’t have much of an awareness of time, so it makes sense that this could be an issue for him. As I type this I am realizing, that our current chart system kind of blows and maybe our next one will be easier for him to understand.

April 22, 2015 Allergy, Diet, & Supplements, Therapy, , , , 0 Read more >

Let’s start from the beginning

CB is 4 years old …

For this week, let’s start from the beginning.

CB’s dad and I had mutually decided that we wanted to add a new addition to our small family of 4 (Olem, our 2 dogs, and me). We started to try to conceive, but my body decided to get all out-of-whack. After a couple of months, my body situation returned to normal but Olem’s schedule was extremely hectic. We decided to stop trying and to wait till we were both in a better place. The next time we decided to try to have a baby, CB was conceived with 2 weeks of trying. The pregnancy was a happy and fulfilling one. It was one of the happiest times of my life. The pregnancy itself was a little noteworthy. I had two yeast infections and took a medicine prescribed by the south american OB we saw for our first ultrasound called Icaden. We were traveling extensively and on a work hiatus when I got pregnant. I had placenta previa for most of the pregnancy but the placenta moved out of the way by the time CB arrived. For the last several weeks for the pregnancy, I had polyhydramnios. At 42 weeks and 1 day, I had to be induced b/c CB was not coming out on his own. I was given a low level dose of pitocin and the Dr broke my water. Labor was on the short side, 6 hours, and my midwife and her assistance were there to help the whole time. I stayed mostly relaxed throughout labor. During child birth, the umbilical cord came out while CB was exiting my birth canal and the Dr decided to cut the cord at that time. CB was born and turned blue right after being placed in my arms. After a couple of minutes (and after Olem began talking to CB), CB cried out and his color returned to normal. He was then placed back in my arms and we just stared into each other’s eyes. I still remember the extreme joy and connectedness I felt at that moment. While in the hospital we hardly slept because Olem and I just wanted to watch CB. The only time he left my sight was when Olem went with him and the nurse to perform a couple of tests. We were so excited about our new beautiful boy. I had lost a lot of blood after CB’s birth because my placenta had to be manually extracted. We had to stay in the hospital an extra day because CB was no longer pooping. It turns out he was severely tongue-tied. At 6 days old, we had his frenulum clipped. I should note he never had problems latching on. He just had problems latching on properly initially since his tongue would only extend to the back of his teeth. I also received numerous sonograms since I had placenta previa and then polyhydramnios.

The first weeks were a bit of a blur. I would nurse while my husband fed me from the food my mom had prepared for us. Olem took care of all the diaper changes, putting CB in his napper, and picking him up. It took 2 weeks before I had the strength (due to the low iron from the blood loss) to carry CB around.

We enjoyed our new beautiful boy and learned to function on little sleep. CB was a good baby and a pretty easy baby, as far as babies go. He enjoyed laying on the playmate and watching the lights and spinning toys, swinging in his swing, going for strolls in his stroller, and riding in his car seat. By 2.5 months, he was sleeping through the night and we moved him to his crib in his own room. One mom had noted that CB made being a baby look easy. What CB did not like was being carried in a sling or carrier on me or belly time. I had a wrap, sling, and 2 baby wearers. It took until CB was 6-8 months old, before he would tolerate me carrying him in one of these for more than a few minutes. He has always loved the water. He was a very happy baby. Everyone always commented on this, as well.

Promising Progress: Olem and I feel even more certain that Global Dyspraxia is what CB has. The DSM V states it as DCD, Developmental Coordination Disorder, but that only accounts for the fine and gross motor planning issues. If we go with the DCD diagnosis, then you could say he has DCD with Apraxia, sensory issues, visual issues, and auditory issues. Global Dyspraxia seems to cover his verbal dyspraxia, motor, coordination, balance, sensory, visual, slow-processing, focus, attention, and low frustration tolerance levels. He also has overall hypotonia (low muscle tone), which is common in DCD and Dyspraxia but is not required. It is still nice to have a more concise unofficial diagnosis.

April 18, 2015 Growth and Progress, , , , , , , , 0 Read more >

CB’s Evaluation, Therapy, and Treatment History

CB is 4 years old …

I touched on CB’s diet in an earlier blog, but I don’t think I have gone through CB’s evaluation, therapy, and treatment history.

CB was 10 months old when his daycare provider informed us that CB was developmentally behind and did not seem to catch on to things like his peers. This was extremely hard to digest.

CB’s first introduction into the therapy world was with a warm, yet challenging Physical Therapist. He was 15 months old. She helped CB learn to walk. He started walking (ability to walk across a room) at 17.5 months. His PT would push him further than I ever would but she knew just how much to push him to help him grow and move past some of his frustration. It was a good experience and we ended therapy shortly thereafter.

CB started gymnastics at around 19 months old. We thought it pretty much worked kind of like PT as it got him moving and trying new and different physical activities. He hated the big parachute for most of the year and needed a lot of herding to keep him somewhat engaged.

The month after CB turned 2, he was evaluated by a PROMPT speech therapist and given the diagnosis of a moderate receptive-expressive language disorder and a moderate-severe neuro-motor speech disorder.  He started PROMPT speech therapy the following week 1x a week. The next month, Early Childhood Intervention (ECI) evaluated CB and determined that he had a significant speech delay. They started their services within the month and came to our house 1x a week. The ECI interventionalist helped CB with speech and social skills (i.e., sharing, taking turns). After 3 months of private ST, it was determined that the PROMPT speech therapist, although nice, was not pushing CB enough. We decided to end private ST and continue with just ECI. About 2 months before CB turned 3, a licensed ST from ECI started coming to the house 1x a week, as well. CB progressed but at a pretty slow pace. ECI evaluated CB for OT help but he was not far enough behind to get help. Although, I think if I had replied more accurately, he would have qualified. As a parent new to the special needs processes, I responded to most things with the best case scenario response. I think I replied that he ate pretty well with a fork and spoon. He still doesn’t eat well with a fork and spoon. It is still challenging and he gets food all over himself 9 out of 10 times when eating. ECI was helpful in training us how to talk to CB and how to play in a more helpful manner. My husband and I are not huge talkers so it felt very unnatural to talk about what we were doing all the time and to repeat what CB was saying. I think this information helped us tremendously and helped CB’s confidence. When we started saying what we understood him to be saying and not phrasing it as a question, I think he started to feel that we really understood him.

At 2 years 11 months, the school district evaluated CB and determined that he qualified for the PPCD (Public Preschool for Children with Disabilities) program due to his delayed speech. For his school district evaluation, he mainly produced 2-3 sounds for everything. Most of his responses were bah, buh, or duh. When the evaluator asked if we thought the evaluation was representative of his skills, we responded proudly that we thought he tested well because he had tried to answer every question with a response. He normally didn’t do that. He many times wouldn’t even provide a response when you asked him to say a specific word or to repeat after you. CB received 2 private ST 15 minute sessions and 1 group ST session at PPCD. CB also started private ST at the same time 1x a week. 2 months later, CB started taking Nordic Naturals Fish Oil, Probiotics, and a multivitamin. AT 3.25 years old, CB’s pediatrician approved blood work due to CB’s chronic loose stools (sometimes with undigested food bits) and developmental delays.

During the summer, there was no PPCD so CB attended a language camp for a month. Then he took a month long break from therapy because we were out of the state traveling. He still continued to progress during the break. When the fall semester started up, CB moved to swim classes since he could not move up in gymnastics since he was not potty trained. I am so thrilled the switch was made. He absolutely loves his swim class and the class is only 2-4 kids total each class. He also started private OT services 1x a week and increased private ST to 2x a week. CB also started karate. It is a class for kids with special needs. At 3.75 years old, I determined from the blood work performed earlier that year that CB had a much higher than average chance of being celiac. The next day, our household went (GFCF) gluten-free and casein-free. Within 2 months, we saw improvements globally for CB from speech to gross motor to fine motor to sensory awareness (he could feel temperature changes outside). Our household also went soy-free within 1.5 months of going GFCF b/c CB started to present with a soy allergy. His ST sessions at PPCD remained the same. In March, we added Physical Therapy to his schedule to focus on integrating his retained primitive reflexes. He has a long list of unintegrated primitive reflexes. She also works on other gross motor skills, as well. I perform the developmental exercises at home anywhere from 2-6x a week. For most of the exercises, I have to do them in passive mode. Surprisingly, CB handles his schedule quite well and enjoys all of the activities.

Some things we have learned along the way 1) the PPCD structure has been extremely helpful for improving CB’s executive function, focus, attention, independence, social skills, speech and potty-training skills. 2) CB has visual, auditory, gross motor planning and execution, fine motor planning and execution, coordination and balance, food sensitivities, speech, and sensory issues 3) to listen to CB and to work within his limits and abilities 4) stop/change therapy if it isn’t working 5) seek answers and ask questions 6) even though we have heard it over and over again, we are our child’s biggest advocates.

Positive Progress: 1) CB is now completely in underwear except for diapers at night. He has been wearing underwear at school since the beginning of Dec but continued to have accidents on a regular basis. We let CB direct when he was ready to start wearing underwear at home and that is working out well. He also decided this week that he doesn’t want to wear diapers during naptime. He still needs quite a few reminders so that he pees in the toilet, and not accidentally in his clothes or on the floor. He even had 3 days accident free. Yay!!

2) We arranged to meet with an expert in the dyspraxia field in the upcoming weeks! We also have talked with a director of a motor planning and coordination lab. We are feeling very positive this week and feel we are moving in the right direction.

3) We upped CB’s fish oil earlier this week. He is now taking Nordic Naturals Omega Complete liquid form .He was CRAZY for about 2-3 days. However, his articulation, fluency, and the amount of language he used improved. He also climbed a new type of monkey bar about 6 -6.5 feet tall (4-5 times) to get on a playscape.  It seems like in the past, the days/weeks or so following an increase in fish oil, CB makes a big jump cognitively, physically, and verbally. We then see a little dip and then a leveling off at a higher level from where CB started.

Low: CB still has light shiners under his eyes, a rash on his bottom, and some digestive issues periodically. Arghh…we have made quite a few diet changes but we still need to keep tweaking and testing to see what is still ailing CB.

April 15, 2015 Allergy, Diet, & Supplements, Education, Growth and Progress, Therapy, , , , , , , , , 0 Read more >

Weekly update

It looks like rotavirus reared its ugly head. Both kiddos caught the bug. Fingers crossed, the virus is moving on. Fortunately, CB has been his usual self and doesn’t seem too affected except for the bowel issues, snotty nose, and sneezing. HB is quite a bit more needy and is having more troubles getting to sleep and staying asleep.

Common CB phrases:

  • “Are you coming?”
  • “Helping me?” while making his modified help sign language sign
  • “I want ____, please”
  • “Yeeeeeeeeeees”

April 1, 2015 Growth and Progress, 0 Read more >

Support groups and progress

I headed off to meet up with a Childhood Apraxia of Speech Mom’s Meetup, our first. It was so affirming to talk with moms with kids who have somewhat similar challenges. It also felt so good to hear about their struggles and  triumphs. I’ve attended a couple of sensory processing disorder support meetings lately, as well. I think it has been deeply meaningful to reach out and connect with other parents.

Glowing Glances: Wow, it seems like so many positive things evolve around CB’s swim class. For today’s class, CB was attentive, responsive, and patient (for the most part). It was like, who is this child? He didn’t need to yell, splash, etc. He seemed quite comfortable just being and being there. A fellow classmate’s mom told me that she thought it was really good that CB is in her son’s class. She thinks CB’s fearlessness of the water helps her son.

Lousy Low: Accidentally, I served CB MSG. It was from a pickled veggies jar from a local farmer’s market. I know to watch out for the term ‘spices’ but I missed it. It turns out that MSG is listed on the spice packet they used. CB had an allergic reaction where his lower lip swelled up and turned purple. He also said his toes hurt and they turned red. We are not sure if it is the distilled vinegar although he has had pickles before, the MSG, or something else. It is very interesting how his body is now reacting to certain foods. We never saw this before starting the gluten-free casein-free diet. (UPDATE: The vendor of the pickled veggies called to clarify that he double-checked the spices they used and they do not contain MSG. The food that caused the allergic reaction is still a mystery.)

 

March 25, 2015 Allergy, Diet, & Supplements, Growth and Progress, 0 Read more >

Current diet and supplements

CB is 4 years old …

The biggest thing on my mind lately is CB’s diet & nutrition. We are currently in the beginning stages of limiting free glutamic acid from CB’s diet. So at this point, CB’s diet & supplements are as follows:

  • Gluten-free
  • Casein-free
  • Soy-free except for edamame & soybeans in his multi-vitamin
  • Artificial color free
  • Preservatives listed as acronyms free
  • High fructose syrup free
  • Animalz Multi-vitamin (2 chewables a day)
  • Nordic Naturals Omega Complete (2 capsules a day)
  • Animal Parade Tooth Fairy (2 chewables a day)
  • D3 drops (1 drop a day)
  • Bluebonnet Probiotics (1/2-1 serving a day)
  • Periodic liquid zinc supplement (10 mg) – was in his diet Jan-early March. Trying to determine if we should keep it in
  • Animal Parade Vitamin C (2 chewables a day)
  • Mulberry Juice (high in iron & Vitamin C – a few glasses a week)
  • Epsom salt baths (a couple a week)
  • Food & Vitamins free of free glutamic acid – implementation underway

When I type all of this out, it feels pretty overwhelming. At times, it feels like there is a small window where we can potentially make a huge difference in CB’s life. It feels like if we do not try enough things before he turns 6 or 7, then we will have lost our chance to make the biggest impact. We know that changes and progress will definitely continue after that age, but we feel certain brain pathways will be more solidified. Sometimes implementing all this is overwhelming and other times, it is comforting. Comforting, b/c we feel we are actually making changes to help CB.

Now we didn’t start off feeling we would be at this place, implementing all these nutrition changes and filling him full of supplements. It would be a good question to ask “how did we get here?”, especially since CB has been a good eater most of his life.

At this point, he eats many vegetables, almost all fruits, nuts, dried fruit, most breads, cheeses, various milks, some beans, and most meats. He wouldn’t eat eggs for the longest time, but he will now eat them on a regular basis. We told him that they would make his strong. (He now holds up his arms, makes fists with his hands, and makes an errrr sound after he takes a bite. We comment on how strong he is. It is so cute.) We have limited his sugar intake all his life and we have had a non-high fructose corn syrup home since before CB was born. He had fast food about 2-3 times by the time he was 2.5 years old. After that, it was primarily isolated to road trips. Most days he drank water as his main drink with a small cup of organic cow’s milk. It has always been a treat to get juice. Fruit was basically his dessert for many dinner meals. If he has ever tried soda, then it would have been just a sip (not sure this has happened though).  From about 1.5-3.5 years old, we had a hard time getting him to eat meat. I think it was too much work for him to be able to chew it. He also was not big into noodle dishes. Fortunately, that has all changed. He just doesn’t like soups or really mushy food like mashed potatoes.

We started off implementing fish oil b/c of his limited speech. We later added a multi-vitamin and probiotics to help his digestive issues. The probiotics helped him to no longer have undigested bits of food in his poop (possibly TMI). He still continued to have really mushy, smelly poop though. We tried eliminating dairy a few times, but his poop remained the same. A few months after his 3rd birthday, we had a nutrition report done that showed he had

  • selective IgA deficiency
  • iron anemia
  • low vitamin k
  • odd blood levels
  • very low zinc
  • and a few other issues.

CB’s pediatrician said she didn’t feel too alarmed and didn’t really tell us much. She only mentioned that CB may be more likely to get sick b/c of the selective IGA deficiency or stay sick longer. It wasn’t until 2 months before CB turned 4 that I came across something on the internet indicating that he had a higher chance of being celiac based off the nutrition results. The next day, we started a GFCF diet. We heard that many celiacs or people with gluten intolerance do not show much improvement in the beginning if casein (milk protein) is not also eliminated.

So we started the diet and then a month later started seeing a nutritionist. She confirmed that she thought he was celiac and gave us some supplement suggestions and helpful info about food. She felt we would see big improvements with CB’s neurological issues. We have made some supplement changes, had another nutrition report done, and met with the nutritionist again since then. We removed more preservatives from his diet and became more aware of other unhealthy ingredients like carageenan. There were definite improvements on the nutrition report. Since we had the original nutrition report done back in April, started the modified diet in December, added supplements in January, and performed a 2nd nutrition report in February, we are not 100% sure whether the diet helped the report or CB’s diet expansion which included eating more meat. In December, we also noticed that CB started showing a food allergy. His cheeks started turning pink after eating. We determined he now has a food allergy to soy. It seems like it is just related to processed soy. He also still will get mushy, smelly poop at times and red cheeks. Plus, he has been having other allergy issues. So, we are still on the journey to really isolate what is going on with our son’s body. Well, it is now mid-March, and we saw something from the biochemist Katie Reid about free glutamic acid. Her thoughts and the science she shared really resonated with me and then with my husband. Her TedTalk and speaking sessions really got us thinking about whether free glutamic acid is causing additional issues. So that is how we got to the point we are at. We will see how this diet change goes.

Positive Progress: 1) CB, HB and I have really enjoyed spring break so far. I feel we have all bonded more and are all feeling positive. 2) CB jumped with 2 feet off the couch on to the floor semi-landing on 2 feet! He landed but then dropped to his bottom. He doesn’t know how to adjust to landing after jumping from that distance.

March 18, 2015 Allergy, Diet, & Supplements, , , , , , , , 0 Read more >

Car hoarder

So something CB does that I guess other kids with sensory issues do is that he takes a large amount of cars with him to the car in some sort of container every time he goes to the car. He may play with them but most times, he either holds on to the container or dumps them onto the floorboard. It is a huge fight if he is not able to take the huge amount of cars. There is clearly some sort of attachment associated with them. If his brother gets one of the cars in the car, CB will grab it, look at it for 30 seconds or so, and then add it back to his pile. He doesn’t actually play with that car. Maybe they are his safety net. Maybe he likes the sound and visual effect from dumping them. Maybe they are just fun to play with or maybe I am a mama who has no clue and just doesn’t get it.

Promising Progress: Yay, CB had his first dry day – 100% self-initiated. He is sill in pull-ups. We plan to continue to let him be the driver in this potty-training race. Something has clicked and he has better awareness. The 2 days prior were not so successful, but this is a big step.

Lousy Low: Seeing him struggle in group ‘PE’ time at his preschool program for special needs children and not being able to help him. It unfolded like a story in a textbook. He was sitting among the other 20-30 pre-k kiddos with a smile and sitting calm. After 20 seconds or so, a specific tune played and all the kids started crab walking, except for CB, who was bear crawling. He still had a smile and watched the other kids but continued with the bear crawl. The tune changed and the kids sat doing something with their hands. CB followed along. Then the specific tune started up again and all the kids started crab walking again, except for CB. He started scooting around on his bottom. He looked around at the others, looked at his body and continued scooting on his bottom. After that, he started chewing on his shirt, yelling, moving all around, and making disruptive sounds. One kiddo scooted away from CB and another stared at him. The teachers called him to come sit on the steps by them. I felt so bad for CB. I can’t tell to what degree he understands and recognizes how he is different and that these motor activities are easy for others but are difficult for him. He clearly has some understanding and chose to leave the situation versus continue feeling the way he felt.

Short note on current priorities:

  1. speech
  2. body awareness
  3. continue troubleshooting allergies, immune issues, periodic digestive issues

March 10, 2015 Growth and Progress, , 0 Read more >

To fix or to help?

CB is 4 years old …

To fix or to help? What is the difference? How does each perspective help or hurt our outlook as a parent?

This thought keeps surfacing in my thoughts when I am researching new things and different angles to help diagnose or to try with my son. I think as a parent of a child with special needs and no definite answers as to why my child has these special needs, I can’t help but wonder whether I can find that silver bullet to help obliterate all the fog barriers, digestive issues, motor planning issues, visual and auditory issues, slow-processing issues, vitamin deficiencies, and other sensory issues. I am the kind of person that likes to fix things. I have to remind myself to not try to solve other people’s problems, but to just listen. I am programmed to see a problem or issue and want to fix it. When we think of our children and the problems they face, I think it is only natural to want to make their lives easier and to help make this world a less scary place. You don’t’ want them to get bullied, labeled or short-handed, but at what point does it become healthier to change the perspective? If I say the words ” I want to fix my child”, it sounds horrible like I feel he is broken. I honestly don’t feel he is broken but I know he is not neurotypical. His brain works differently than others. This brings challenges but good things, as well. It is sometimes hard to see the good things through all the evaluations, struggles and frustration. It seems like all the less positive things are in your face rearing their not so pretty selves tempting you to put your focus, time and energy on them. These things are identified as things that can hold a child back, impact their self-confidence or make them more of a target for bullying, and/or potentially be a challenge. For most of CB’s life, I think I get wrapped up in all of this because it gives me hope. Hope that one day he will be neurotypical, self-confident and able to say “yes” to life. I want where he does not automatically say “no” or “stop it” because 1) he automatically doubts his abilities, 2) he sees it as a threat to himself, 3) he does not trust that the requester’s request is in his best interest, 4) he feels it makes him uncomfortable, or 5) he feels it will stifle him. Now it isn’t like my 4 year old necessarily has a clue as to whether something will make him feel stifled but I think he has a vague sense of what it means to feel controlled, limited and to not be himself.

So many thoughts are going through my mind and I cant even write it fast enough or organize it as you can see from my constant tangents. “I feel I am not close enough to my son”, “Does he trust me to love him, protect him and to let him be him?”, “Are our choices limiting him versus allowing him to flourish and really be him?” This is at the heart of why the thoughts of ‘fixing him’ is bad. Who wants to be fixed? Who wants to feel like they are someone that needs fixing? Am I sending out these energies or feelings to him? I think so. I think he knows I almost always have an agenda when we play. I am almost always trying to incorporate therapy whether it be speech, fine motor, or gross motor. I see our interactions as ways to provide therapy and as a way to get my helping agenda across. How do I transition to coming from a place of love, support, encouragement, acknowledgement and growth? I am here to love, guide, encourage and to help him grow. I feel I am not enough without the studies, research, therapies, and guidelines. I do not have what I need to be the parent CB needs. It is easy to get lost and wrapped up in this journey. It is unfortunately easy to get weighed down. How does one remain light, happy, helpful, resourceful, encouraging, and enough? How do you move past the idea of fixing and instead focus on accepting. Accepting where my child is and where he has come from? Accepting that we don’t know where our child will end up. How can I reshape my perspective without giving up hope and without feeling I am not missing something? How can I be more? I have mentioned to my husband several times recently that we need to get used to the idea that CB’s struggles will remain and that nutrition changes and other interventions will not ‘fix’ him. I tell him that they hopefully will just remove the fog and to help him reach his potential. I think I am telling him this with the hope that it will make it easier for me to accept it. But it comes back to the thought that if I accept it then am I limiting my son and not believing he can be more? I know I am his best advocate and I need and must fight for him. How do you accept but keep high expectations? I don’t want him to feel we ever didn’t believe in him. I feel a little inside that by changing my perspective, I am somehow giving up a little. Obviously, this is not a black and white issue. I think I personally need more time to work through this and to form my best perspective for me and my son.

 

Glowing Glances: 1) CB swam without any assistance underwater for 10 feet. The furthest in the class, btw :). CB showed a lot of exuberance and energy in class. He really enjoys his swim class and seems to really jump in full force. The class allows him to just be himself. 2) CB is responding better to the phrase, borrowed from a Daniel Tiger episode, “He can take a turn and then you get it back.”

Promising Progress: CB is spontaneously putting 4 & 5 word utterances together (on occasion)

March 4, 2015 Worries, Fears, & Ramblings 0 Read more >