Dyspraxic Journey

Dyspraxic Journey

A mom's ramblings about her son's journey through the world of dyspraxia and genetic differences

Latest Posts

Losing a Loved One

This evening’s blog is a bit off topic as it is not about CB but rather about my dealings with the loss of my grammy.  My grammy passed away last week and I realized I am still heavily mourning her loss of life. Just about anytime someone asks me about her, tears roll down my cheeks. Or someone can talk about something else sad to them and those same tears form and roll steadily down my face. As much as I would love to be that person that is the most empathetic person you know, that is not normally me. I try, I do, but generally tears do not flow that easily with me. Don’t get me wrong, when my hormones are fluctuating during those specific times of the month, I can cry over anything. (I am still waiting for my hormones to normalize a bit more. HB stopped nursing earlier this year and my hormones are still trying to figure out how to act appropriately.)

My grammy and granddaddy were my closest neighbors growing up and were a huge part of my childhood. My grandaddy passed away 8 years ago. My grammy lived on and remained in her home. She has been on hospice for the past 3 years (and the Dr told my mom she wouldn’t last one month after they put her on hospice) so I have had time to prepare for her passing. Just under a week prior to her death, a health situation occurred that caused her to go downhill quickly and I got the chance to see her and tell her goodbye before she lost recognition of those around her. I got the chance to have “closure”. Even with that “closure”, I am still mourning our lost connection, her symbolic role in the family, the heartache my mom and aunts are enduring, and the loss of one more of my dear grandparents.  (more…)

September 22, 2016 Worries, Fears, & Ramblings 0 Read more >

Educational Desires for CB

Olem and I are in the throes of figuring out whether we relocate for better schools, try out our local public school, consider one of the many charters in the area, or consider a private school for next year. I would love a crystal ball and to be able to foresee what future would be best for CB. Ideally, we want HB to attend the same school so he can be there to help out CB if he needs it and vice versa. With all the talk about how our state is failing kids with special needs and underprivileged kids, it makes it even harder to continue to invest in this state. We think about how nice it would be to live in a state that understands the impact and importance of investing in our children, including those with special needs and those with less means. Why are our representatives so short-sighted and only worried about the costs of today? I mean, how can a representative with special needs represent this population in such a negative way and really feel that limiting and in some cases removing supports within the school system and within the medical system, including cutting funding for children with special needs on medicaid, make any sense for the state? Additionally, we live in a school district where a huge chunk of our taxes are reallocated to schools outside our school district and our school district representatives are not committed to investing in children with special needs either. Where does this leave us?

Olem and I got in an argument last night over whether it really makes sense to stay in our city and our state. He argues that another state may better suite our son’s needs, our political views and our values. And possibly, we could get all of this and pay a lower cost of living. It would be a huge trade-off though. We have a good support system here – friends in town, family within a few hours, moms’ groups, good, healthy food, restaurants that cater to diet restrictions, easy access to medical resources, lots of therapy options, different schools and types of schools, good weather, like-minded people around us, good neighborhoods, the beach within a few hours, close access to camping and good hiking, good weather, low crime, lots of job opportunities, good town culture.

I think it is pretty easy to tell that I want to stay. I just can’t think of another place I would prefer to be. At the moment, I think we can get all we need in this area. As I started off saying, before my big train-of-thought detour, we are trying to decide whether we need to move to a different school district. If we move, we will be further away from everything, have to travel further to schools, and will have less access to a variety of schools. Well, at least all of this is true for the primary neighborhood/school district we are considering. We also will potentially be paying more for our home and have less finances to consider alternatives other than public school. I guess one big question is whether we feel public school, even one that provides the best special education resources in the area, is the best fit for CB, at least for the next couple of years.

What I like about the thought of a good public school with proper special education resources

  • CB will be included in a classroom with typically developing peers
  • His education will be provided for by our taxes
  • The team has training with how to handle behavior disruptions within the classroom
  • CB will get the same education as other typically developing peers
  • The school has to provide accommodations and differentiated learning
  • Having CB in the classroom will be beneficial to him and his peers
  • The material can be modified if CB needs it
  • My neighbors’ children will attend the same school
  • CB will attend public school like Olem and I did

What I don’t like about the thought of a good public school with proper special education resources

  • There will be standardized state-mandated testing and the anxiety/pressure that comes from it – The schools in our area put a lot of focus on it, unlike when I was a child
    • Although having a child with special needs means my child can take a different version or potentially opt out
  • There will be regular homework in elementary school
    • Although I may be able to get it reduced
  • The differentiated learning and accommodations have to fit within the school’s framework – There isn’t typically too much differentiation they can do.
    • A good, well-trained, knowledgable school should be able to more flexible than others.
  • The school may push to put CB in a contained classroom for part/all of the time over the years
    • As the parent, I have the right to push-back. The burden of proof that the contained classroom would be the least-restrictive environment would be on them.
  • CB will get frustrated often due to the inflexible schedule/difficulty of the work/typical expectations if the teacher/assistants are not well-trained, motivated, flexible, creative and understanding
    • A good school should be able to provide these kinds of teachers.

So the continual weight of it all will continue. I am a person that likes to plan and not-knowing right now is quite frustrating and a bit overwhelming.

September 18, 2016 Education, , 0 Read more >

Nutrition, Supplements and Therapy Update

Here is a quick summary of CB’s supplements, therapies, schooling and diet.

Supplements

  • Morning
    • Vitamin D3 – 1 drop (Franklin & Friends – 400 IU)
    • Multivitamin – 2 chewables (Garden of Life Vitamin Code Kids Chewable Whole Food Multivitamin)
    • L-Carnitine – 1 capsule (Now L-Carnitine Fitness Support 500mg)
  • Evening (Before Bed)
    • Probiotic – 1 capsule (RenewLife 15 billion)
    • Fish Oil – 1 teaspoon (Nordic Naturals Omega 3 1600)
    • Vitamin C – 2 chewables (Nature’s Plus Animal Parade Vitamin C Natural Orange Flavor) – Periodically 2-4x a week

Therapies

  • Speech – 4x a week (2 private therapists and 1 therapist through proportionate share)
  • Occupational – 1x a week
  • Physical – 1x a week
  • Extra-curriculars
    • Piano Lessons – 1 x a week (to improve fine motor and motor planning)

(more…)

September 18, 2016 Allergy, Diet, & Supplements, Therapy, , , , , , 0 Read more >

Will we be moving?

The latest news with our family is that we are highly considering moving further out of town. I recently have reached out to more parents with children with special needs that live in my neighborhood to get their thoughts about our local elementary. Don’t get me wrong, it is a great school and one of the best in the entire area; however, I have received very mixed results from the parents of children with special needs. This is disheartening. I have talked with other parents with children with special needs that live in a smaller school district nearby who rave about their school system. This would also give us the chance to own more land, get more space, and live closer to the water. There is also a community space we can join with a pool, park and lake access. That could be a great option for meeting neighbors. We would live less in the middle of everything which has its benefits and drawbacks.

Our 3 week road trip ended last week. Lots of positive memories, genuine family visits, and the chance to get away from the heat. The kids traveled well, but man, I was exhausted when things were said and done. For all the positives, there was 2 solid days on the road, tension due to the stress of traveling, and the fact that these road trips really get us out of our element and get us thinking about our lives. Things surface that you may not be expecting. When we got back, I told myself that we need to find a different option for next year. However, just over a week later, I may have to already change my mind :). For all the tension, it may be a good thing for that tension to surface. Maybe with 3 summer road trips with the kids, we will be more prepared and aware of what comes from these trips. Plus, Olem was already in a questionable place so traveling with kiddos may not be the most relaxing and stress-free thing to be doing. The last 2 road trips have required us to rush back as there were other trips that got added to the end of the summer road trip. For this year, Olem had to fly out for work the day after he got back. (more…)

August 18, 2016 Growth and Progress, Therapy, Worries, Fears, & Ramblings, , 0 Read more >

Summer Vacation

We are away on our regular summer vacation!! Unlike the past where we would home swap, this summer we ended up having to secure a home through airbnb.com. We just couldn’t get anyone to want to trade homes during the dead heat of summer, surprise, surprise :). Sort of surprised we had luck for the past 2 summers. Like usual, the kiddos were great road trippers! We made our way north which took about a week with stopovers with various family members. All of our family visits were short but sweet. CB has always loved riding in his car seat, even as a baby. I think HB has simply followed suit as he has seen how his brother behaves on car rides.

We could not have planned a more jam-packed summer if we tried. I can’t say I would have given up any trip or experience, but I do wish there had a been a bit more relaxation time built into the schedule. I think some of CB’s behavior tidbits this summer were directly connected with our travels. Overall, the summer break has been good for him. He has more chunks of time set aside for play, mostly with HB, which I think is good for him. We have followed the new supplement schedule with just a few exceptions due to traveling and I think the supplements seem like a good fit. We are sticking to the GFCFSF diet. Thank goodness for all the modified diet options we have today. We attended a conference a couple of weeks ago where we connected with other families and learned more about CB’s genetic difference. I think the main things we learned is that an MRI could be helpful, an updated hearing test, signs to look out for for anxiety, an awareness that developing seizures later in life is possible (not sure though if it is really related to his gene or others on the long arm of Chromosome 18) and a few more things to investigate.

I am toying with the idea of piano lessons but then I also want to ensure that he has sufficient off-time/playtime. This is the second time he has said yes. We will see. I guess the next thing I need to figure out is his schedule and to ensure not to pack in too much into it. How do you do that with so many needed therapies? I guess that is the challenge we have as parents with children with special needs. I know that playtime is super important at his age, and his school gets that. I hope this year if things get to hectic, I will be aware enough to back off a bit and see if things balance back out. I also should see if there is an insurance-covered OATS-like test to test his levels to see if the supplements and anti-fungal cleanse helped.

 

July 25, 2016 Genetics, Growth and Progress, , , 0 Read more >

Nutrition Update – Low Iron

Feeling a bit bummed today…CB’s nutrition report came back with low iron, high UBC, low cacl % iron saturation, low IgA, slightly low zinc, high vitamin E, low WBC, and improved vitamin D3. I believe the persistently high vitamin E levels are due to CB’s high almond intake so this is understandable. His IgA level is 6 points lower than it was 2 months ago but the second test was taken in the morning while fasting so that might account for some of the difference. The zinc is the exact same value as 2 months ago and the vitamin D increased some. The vitamin D increase is easily explained by the additional time in the sun plus vitamin D supplements for the first month or so after the last test. However, the vitamin D3 level is not as high as we would like it to be. CB stopped having dairy in his diet one month before the last test. There is definitely the potential that adding dairy back in caused the decline in iron. Even though the dairy was in his diet before the last test, maybe it took more time to really impact his intestines and then his iron levels. From this we know only adding vitamin D3 supplement does not bring up the iron and zinc levels. We also know that although the probiotics are helping, they are not enough.

We feel at this point, we are going to take a step back and look through his previous nutrition reports to find when his levels where the best. It seems like October of last year, his vitamin levels were quite solid with the exception of low IgA (although it was improving) and high vitamin E (still high almond intake). For now, our plan is to get back on the following supplementation routine. CB will also remain GFCFSF plus we limit dyes, no HFCS, any preservatives with initials for names, no carageenan, and no MSG. (more…)

July 7, 2016 Allergy, Diet, & Supplements, Education, Tests & Evaluations, , , , , 0 Read more >

Summer is Now in Full Swing

I can’t believe it has been a whole month since I last wrote a post. With school ending, camp starting, and trips to two states and another country, it has been a bit of a whirlwind. It is hard to determine where to start.

Well, for the latest nutritional update, CB had blood taken today so we will know in a week or so whether his vitamin levels are back to normal. I believe I mentioned we ultimately decided to completely cut out dairy again. It just really seemed like the factor contributing to the declining levels. We will see soon. Otherwise, for the last month, CB regularly gets probiotics at night, but that has been the only supplement. We will most likely add the enzymes back in to help with his regular smelly gas after he eats. We were waiting to make any additions/changes till after we receive the blood work results. We quite giving him the vitamin D drops b/c he is getting so much sun everyday. We will also need to think about adding the multivitamin back in. I am really curious to see how his Vitamin E levels and to see if his fat absorption has improved.

I have now met another family with the same genetic mutation as my son. It was so affirming and feels really good to know you are not alone. Although our children are different, it is easy to tell how the genetic difference greatly impacts both our children’s lives. Still not much is know about SETBP1 loss-of-function mutations so we still have to address each symptom, i.e., speech therapy for the motor-planning disorder, OT for the fine motor challenges, PT for core strength, balance, and coordination, diet for sensory needs, etc. It would be nice to be able to help the root cause, but who knows if/when during CB’s life this level of information will even be known. I am reaching out to as my knowledgeable professionals and researchers as possible to find out what we can. (more…)

June 29, 2016 Allergy, Diet, & Supplements, Genetics, Growth and Progress, , , , , 0 Read more >

Impulsivity and Reflected Emotions

I’m trying to figure out how to even start. This last week and a half have been quite hard. Poor CB has been sick with a fever that lasted for 4 days, plus a cough, runny nose, sneezing, and increased impulsivity. The impulsivity started before the fever and it has grown to such a degree that we opted to remove cow’s milk from CB’s diet again. The decision also took into account reviewing his latest blood work and past stool test to determine that his gut does not seem to be performing at optimal levels due to the high fecal fat content and the lower vitamin levels of zinc, D3, and iron saturation. Goat’s milk is still currently in his diet and he is eating goat’s milk kefir in the mornings to help combat the antibiotics he is taking. He still also gets his probiotic at night. Since he has been prone to yeast infections in the past when he takes antibiotics, I try to ensure to restore with good bacteria. Olem and I still feel that diet can make a big difference and are just trying to see if there is an optimal diet that suits CB best. There are always so many factors to consider that it is typically not one thing that we can pin such behavior changes on. Additionally, some of CB’s therapies and his preschool are coming to an end. He could be feeding off my and/or his teachers’ energies. He can be very sensitive to others feelings and we see his behaviors reflecting/modeling back others emotions. We talk with CB about some of his therapies and preschool ending but CB doesn’t say much or respond much to these comments. Who knows if this is affecting him more than he can show us.  (more…)

May 26, 2016 Allergy, Diet, & Supplements, Worries, Fears, & Ramblings, , , , , 0 Read more >

Trip to the Coast

CB and HB absolutely LOVED our trip to the coast! We visited family including their cousins who are similar in age. OMG, their faces glowed with pure joy while we were on the beach. The water was so low that CB could run from Olem or I in the water, back to the base camp to pick a different toy, and then back out to us in the water. Having that kind of independence and freedom made the visit so much more enjoyable. Both kiddos stayed out in the water for at least an hour at a time. The kids got to build sand castles, touch a crab, find fish in the water, body surf (well, their version :)), crash into waves, swim like fish (CB did), chase the sea gulls and shoot them with a water gun (again CB :)), and savor in just being outdoors. Kite flying was briefly attempted on the second day, but the wind was just too strong. CB is not afraid of the water, at all, and it is great to see his free spiritedness freely flowing while at the beach.

There is also nothing like getting to stay in the same house as your cousins and really get to know them. Like CB not understanding why his cousin Kyle, 6 months younger than CB, wouldn’t want him standing beside him while he went poop. As you can see CB does not have too much understanding of others needing space. Or the times where all the kiddos would sneak off to the other room to play in the tents and with each other’s toys. It was so nice for us parents to have some time to visit or prepare meals without interruption.

 

May 19, 2016 Highlights 0 Read more >

Update on Latest Blood Work

CB’s last round of blood work was 6 months ago. Since the last blood work, we have made several changes to CB’s supplements and diet. We stopped well just about everything at one point, except for the probiotics. For the last 3 weeks, we added digestive enzymes and fish oil back into his schedule. For the last two weeks, we added D3 back into his morning routine. Dairy was incorporated about 3-6x a week, mainly through cheese, yogurt, butter, and some ice cream, for about 1.5 months. We wanted to see if the dairy was impacting his vitamin levels.

We got his blood work back this week and his body was showing the beginning stages of declining iron, vitamin D, and zinc levels. I believe all of these are related. On a positive note, his IgA was 1 number below the normal range…wow! I can’t believe that he might actually have normal IgA levels soon. His Vitamin E level was still high but lower than the levels reported over the last year or so. I think the high Vitamin E levels are still related to fat absorption or fat breakdown issues. We will see if the enzymes help the matter. I thought the L-Carnitine should have helped that, but the last test didn’t reflect that. We stopped the L-Carnitine awhile back so I don’t know for sure. His vitamin K, homocysteine and magnesium levels also looked good. So now, we have to figure out why he has declining iron, Vitamin D and zinc levels. Unfortunately, since we stopped the Vitamin D3 for awhile and we added in the dairy, we can’t say for sure whether the removal of D3 or the addition of dairy caused this. We are obviously assuming it is related to one of these things, but it is always hard to know for sure since we always make several changes between the blood work dates. We have decided to test again in 2 months with daily Vitamin D3 supplements and zinc incorporated for a week or so and to keep dairy in his diet. If any of the levels remain low, then we can assume that dairy is the culprit and to cut it out and test again in another 2 months or so. If all levels return to normal, then we are going to assume that CB needs D3 supplements and that dairy plays an insignificant role. For the past tests, we saw the vitamin D, zinc, and iron levels continue to grow while D3 was a regular supplement and dairy was not a part of CB’s diet. (more…)

May 5, 2016 Allergy, Diet, & Supplements, Tests & Evaluations, , , , , 0 Read more >