Dyspraxic Journey

Monthly Archive: March 2015

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 >