Dyspraxic Journey

Dyspraxic Journey

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

Latest Posts

1st Grade Here we Come

CB starts 1st grade in a few days! We have more supports in place for this year so I hope this will help CB to have a successful start to this school year! I am feeling nervous which is to be expected for any parent. Will he like his teacher? Will he make friends? Will he feel supported and have the confidence to try his best? How will he handle the increased awareness that he struggles more than most his peers to learn, to write, and to perform basic math? Will he continue to like school? Will having his younger brother at school this year help him? Yep, HB is starting school this year too! I am optimistic that having them both at the same school, for the first time ever, will be a positive experience for both of them.

August 18, 2018 Education 0 Read more >

ADHD Meds – Will they work?

We decided to try ADHD meds after our other efforts to improve CB’s attention did not help. His neurologist prescribed the liquid fast release form of methylphenidate at a low dose. CB tried the meds out over the weekend. We noticed that he was still completely himself but he was not as distracted as usual. He mentioned that his heart was racing the second evening he was on the meds, but did not comment on this feeling ever again. His teachers all commented about how much the meds helped him focus, feel less frustrated, and be in a better place to learn. His teachers reported that his learning remained pretty stagnant the 2nd 9 weeks of school and after he started the adhd meds, learning began to progress again and his behaviors improved immediately. Since he was on the fast release dosage, he took it in the morning and just before lunch. His teachers reported that they did not give him any demanding work just before lunch when they could tell his meds were wearing off. We wonder if he experienced the rebound effect during that time as he would seem more easily frustrated. Either way, it was easy for everyone to tell the ADHD meds were helping him focus, helped his regulatory behaviors (like saying the same word/phrase over and over, randomly blurting out inappropriate words, rocking), and helped him learn and progress.

February was a very positive month for everyone! In addition to CB being happier, I got the help I needed and was able to turn my outlook around. I also started attending a parenting class for parents with children with special needs. The class provided me with some new tools for dealing with difficult behavior and I felt empowered, like I could help my son again.

March 1, 2018 Allergy, Diet, & Supplements, Education 0 Read more >

A Pebble in a Waterfall

It feels like I am a pebble slowly flowing through a stream with small cascades. The stream gradually flows into a river with larger cascades causing the water to move faster and faster as well as the pebble. The river water gains momentum until it plummets over a crashing, powerful waterfall. The pebble is flowing along and has no awareness that the waterfall is coming. Once it falls, there is no stopping it. The water keeps pounding on the pebble. The pebble can kind of see other rocks and some pebbles around it so it is not alone; however, the pounding water does not stop. The pebble is trapped under the waterfall and cannot break free. It’s shape is changing and the pebble is powerless to change it.

I have felt like that pebble over the last few months slowly gaining momentum heading in a direction I cannot control. My shape changes just a little and I have moments of vulnerability I cannot hide. As of the last couple of weeks, the water around me has moved faster and my shape is changing more. As of a few days ago, I have plummeted over the waterfall. I don’t want to be at the bottom of the waterfall just trying to move. I want to be back up on the top in the nicely flowing river. I want to come up for air. I need help!

My personality is one where I try to keep most things inside and contained. For better or worse, that is what I do. I like to control my environment around me and it helps to keep me safe and I can keep my life together. Now that I am at the bottom of the waterfall, I can’t keep everything nice and contained. I can’t put up a facade that everything is ok, or if I do, I can only hold it together for a few hours. When there is a lull, I start crying. And sometimes, it is that big, ugly gasping for air crying.

My older son with special needs has started public kindergarten. He has a good, caring teacher. He has a shared TA that wants to help. He has an IEP (Individualized Education Plan). He has a principal that wants to help. However, he is struggling. He is struggling with all fine motor activities – cutting, writing, coloring, copying, buttoning buttons, tracing and with math – 1-1 correspondence, counting to 30, visually seeing the difference in 3, 4 or 5 items and with pre-reading – correlating sounds with the appropriate letters, blending, sounding out words, and sight words. He struggles to feel motivated, to try and to stay focused. He struggles to follow too many steps presented to him. He struggles to control his behavior and his words. He struggles with being over stimulated. We knew before he started that these would be challenges. We also knew that we would have to advocate for him. I guess some of the things we did not expect are 1) An inexperienced case manager who did not know she needed to track CB’s goals 2) A school/teacher that would send a Kindergartner with an IEP to the office 3 days in a row for inappropriate behavior 3) A principal/teacher that seem to be on the same page with you and then the very next day do something completely different. 4) A school not equipped to help CB with his behavior challenges and learning disabilities. Why is it so hard? I feel like a failure to my son. I feel like I don’t know how to support him with his needs. I don’t want him to already dislike school. I don’t want him to feel inferior to his peers. In some areas, he is barely progressing and I don’t know how to help and I don’t feel the school does either. We have a request for a Functional Behavior Assessment (FBA) in order to create a behavior intervention plan (BIP) at school, but it has not been started yet.

I have also felt like a failure in my outside activities related to CB’s genetic difference. I feel incapable of motivating the group which in turn makes it hard to move forward with our organization’s goal to raise funds for research to help CB and others like him.

I am contemplating using ADHD meds with our son for the first time ever. It is a difficult decision and one that we do not take lightly He has numerous sleep disturbances every night, as well, and we are currently trying melatonin to help it. In November and December, we tried supplements prescribed by CB’s neurologist which included prescription-strength omega 3s, gaba, methylated folate (Vitamin B12), magnesium (25 mg), Vitamin B6 (12.5mg), and zinc (5mg). Ultimately, we feel it made him more hyper and he was just as inattentive. We most likely will stick with melatonin a little longer and if that doesn’t help try a little Benadryl. He wakes up sneezing just about every morning so that could help for both the disturbances and the sneezing. We feel if he gets better sleep, then his attention and behavior will improve. If this does not help his sleep, then it looks like ADHD meds will be the way to go.

I want to feel like I am not being pounded. I want to feel like I am slowly moving through the water. I want to be able to come up for air! I cannot remain alone. I must ensure to put out all these thoughts and feelings into the universe, whether it be through blogging, talking with friends, talking with my husband, talking with other parents with children with special needs, and/or talking with a counselor. This is too much to carry alone and I don’t need to do it. I don’t need to worry about being a burden or about putting my issues on others. I don’t need to feel like I am a failure and a burden and keep it inside. Inside it grows and festers and keeps the water pounding and pounding non-stop on me. I need to make a promise to get outside more, blog more, to not carry the worry/guilt/feelings alone, to care for my husband and our relationship more and to spend time thinking about positive ways to help CB feel successful and happy!

January 29, 2018 Allergy, Diet, & Supplements, Education, Growth and Progress, Worries, Fears, & Ramblings 0 Read more >

Kindergarten – In full Swing

CB gets to walk to our local neighborhood public school every morning! He may not be super-excited about leaving the house each morning at 7:10am but once he gets outside, he is ready to move and explore. He loves being outside and the walk to school is perfect. Flowers and plants to explore, vehicles of all shapes and sizes driving by, and new friends to potentially walk-with – what more could he want? He jabbers the whole way to school talking about everything he sees and shares this not only with Olem and me but with anyone walking by. CB talks with everyone which makes him already well-known at school.  It’s also garnered him several play dates with a couple of friends from the neighborhood whom he encounters on the walks to school. Beaming mama face (on the other side of this computer)!

CB lucked out this year as his kinder class only has 16 students and he shares an aide with a couple of students in the class. Socially, he is about on par with his peers. Last year he attended the 5 year old program at a nearby university program. It was play-based and allowed him to grow in his confidence and with his social skills before starting kinder. Surprisingly, eating in the noisy cafeteria with his peers has not proved to be too much to handle. Providing tasks for when he finishes eating is helping to keep him from getting into too much mischief. His headphones have also not been needed, so far. Behavior challenges have surfaced, which is to be expected, but at a lower level than we anticipated. Academically, he struggles with fine motor, math, and coordinated movement skills and his pre-reading skills are coming along, just at a slower pace. Currently, he gets 45 minutes of speech at school weekly and limited OT. He also has other accommodations and modifications based off his IEP, Individualized Education Plan. (more…)

October 23, 2017 Allergy, Diet, & Supplements, Education, Highlights, Therapy 0 Read more >

Mooo…yep, we are going to introduce you!

So, dairy has not been a regular part of CB’s diet for 2.5 years. We have tried introducing it back into his diet a couple of times but for various reasons have removed dairy each time after a few weeks or a month or so. This time Olem and I decided to add it back into his diet because 1) his latest 2 lab results look good, 2) his behavior has been more manageable for a couple of months, 3) his allergies are not bothering him currently, and 4) we do not want the food group entirely eliminated if it doesn’t need to be.

We started with whole cow’s milk yogurt today and will try it for several days, remove it for a few days, and monitor results. Fingers crossed his body accepts the change and we don’t see negative side effects.

This is sort of crazy, but CB is still in the same phase he was in from my last post in early May. What?? He has remained in a more positive place and has been more flexible with correcting his use of negative words during vocal outbursts/stems and modifying his inappropriate behavior with friends and younger brother. Maybe summer break suits him :).

CB watched his 3rd movie at the theater this past weekend, Cars3. We went to a sensory-friendly showing so kid attendance was high. CB stayed the whole time inside the theater and in his seat . He started wearing his headphones after the previews (which were slightly quieter). CB did ask to leave 2 times but his heart was not in his request. He didn’t insist on it. His teddy and headphones made him feel safe.

June 29, 2017 Allergy, Diet, & Supplements, Growth and Progress 0 Read more >

A Welcome Phase

The last couple of weeks have been calmer than usual. Why? Well, I am not completely sure but I am definitely enjoying it. (I can’t help but wonder in the back of my mind when will this all change? Until then…) CB has been more loving, agreeable, and seems a bit more “put together” than his usual self. The last few days, when I ask him to do something, he replies more times than not with “okay”, a really cute, quick, and subtle “o’kaaay”. He also chooses to sit in my lap when I read his chosen book(s) during bedtime and has even cuddled up close to me 2x when he comes to our bed during the middle of the night. He usually just keeps a leg on me or allows my arm to rest on him for about 20 seconds. His body seems a bit more regulated.

I can’t pinpoint if this welcome change is related to other changes in our lives or whether it is just coincidental. Some of the changes over the last few months have been CB, HB, and I swimming together on a weekly basis, CB upping his OT from 1x to 2x a week, his teachers providing yellow highlighted work to trace instead of needing to have hand-over-hand assistance each time he wrote, camping and more family around the last few weeks, and more regular play dates w/friends. Maybe developmentally, this is just a new phase he is in. This week, CB wrote his name completely by himself (not perfect, but 100% independent without a model, verbal direction, or tracing)! He was so proud of himself with his loud call of “Mommy, look what I did!” and his beautiful smile beaming across his face. He also started riding a bike with training wheels within the last 3 weeks. Weekly, he has initiated getting on the bike for a short ride down the street.

We still have meltdowns over small things but usually just 1-2 a day and are manageable. Redirection has been easier.

CB’s last day of school was yesterday. He has formed bonds with several of his classmates and I love how he is just one of the gang.

I hope this long summer break will be a time for CB to grow, play, develop/dabble with new skills to help make life easier for him, enjoy life, and make lasting memories!

May 6, 2017 Growth and Progress, 0 Read more >

Short Nutrition Update

We have our latest update in our quest to get CB’s blood work to look unimpressive and plain jane. CB’s iron and zinc were solidly normal. IgA is just a little low, as well as, WBC and lymphocytes. Overall, it is a good report! His body seems to be in a good place. We are sticking with the GFCFSF diet and also started incorporating homemade coconut milk kefir into his diet. For the last couple of months, CB has not taken any supplements. We may add fish oil back in, as well as, a daily supplement, but not at this point.

March 9, 2017 Allergy, Diet, & Supplements, , 0 Read more >

D. Fragilis Is Reportedly Gone

One thing that we have learned on this journey is that CB has a sensitive immune system. He doesn’t get sick often, knock on wood, but his system is sensitive to random infections, bugs, and immune suppressors. During the last few years, he has tested positive for yeast infections, anal strep, d. fragilis, selective IgA deficiency, multiple vitamin deficiencies (despite eating healthy and a variety of foods), food sensitivities, and allergies. OK, some of these are common, but I don’t believe anal strep and d. fragilis are all that common.

The latest culprit is d. fragilis, dientamoeba fragilis. D. fragilis is a parasite that lives in the large intestine. It is controversial as to whether it is pathogenic. If you do a quick search on the web, you will see many anecdotal reports stating that it can cause IBS type symptoms, decrease the body’s ability to absorb iron, and can be very hard to anihilate. You can read more about dientamoeba fragilis at https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3862407/. (more…)

January 5, 2017 Allergy, Diet, & Supplements, , , , 0 Read more >

Parasites Strike Again

For me and for most of the moms I know, after we take in the fact that our child has special needs, we set off on a journey to find the root cause of our child’s challenges and sometimes illnesses. Even when we think we have an answer, it is not the final answer. Things are always in flux and we are always learning something new. Information posted a few years ago may already be disproven or at the least improved upon. Even though we know CB has a genetic difference, genetic variance, genetic mutation, whatever you want to call it, we know that he exhibits a myriad of symptoms that may or may not be 100% related to this genetic variance. He could exhibit some behaviors because the genetic variance makes his body more susceptible to other infections, illnesses, or other difficulties.

Our latest work up results included blood, urine, and stool.  We did this as we were considering seeing a pediatric gastrointologist. This pediatric gastrointologist wanted an extensive work up including blood, urine, and stool before he will see your child. His visits are also 100% out of pocket and if he has to do a scope, a good portion is not covered by insurance. Since it was time to do CB’s usual blood work, we added in the extra tests. The good news is that we do not feel we need to move forward with a visit to the pediatric gastrointologist based off the results of the work up. (sigh of relief). The concerning news is that CB’s iron is still low and his IgA levels have fallen even lower. His wbc count is low but nothing else on the CBC. His zinc and vitamin D look fine but we supplement those. The other interesting finding is that his stool still contains d. fragilis. This is the same parasite identified in his stool from another lab almost a year ago. We treated the parasite with humaworm. Actually, the entire family took humaworm. We felt his symptoms had improved afterwards. Since we did not test again, I don’t know if it actually cured it and he was reinfected or it never fully cured it.  (more…)

November 18, 2016 Allergy, Diet, & Supplements, Tests & Evaluations, , , , , , 0 Read more >

Here and Now

I haven’t felt inspired lately to post anything so I was just thinking about what would help me in the future when I look back. One thing that is always helpful is to have an update on how CB is growing, changing, and learning. So, this is a post dedicated to CB here and now.

So far, this school year is going really well for CB. He had one tough week from Oct 12th-Oct 19th where he was physically acting out and physically responding to his friends and teachers. Then on Oct 20th, CB woke up and seemed different. He seemed calmer. From that point on, he has interacted appropriately with peers (excluding using inappropriate words with teachers and occasionally with peers). His peers seem to treat him appropriately and enjoy his company. He looks forward to going to school and from observations enjoys his time there. He is even enjoying journal time, which at this point is CB deciding what sentence to write, the teacher writing the sentence out with dotted letters, and CB tracing the letters with hand-over-hand assistance.

CB’s vocabulary and sentence structure are continuing to grow in depth and length. He can verbally express so much more. He still has difficulty saying some sounds like “l”, “w”, “f” and possibly “th”. His biggest issues are with sentence structure and motor planning to organize his thoughts. The therapists are working on asking questions and making sure he is using pronouns, articles, and correct verb structure. He still receives speech 4x a week, which really helps.

For PT, he seems physically stronger and can run longer distances than he was able to do just a couple of months ago and he can jump from higher distances. He still has problems with staying in motion while running. He normally stops after running a short distance. We are currently evaluating why this is happening (i.e., just tired, vision issues, motor-planning issues, etc.). He has an appt with a behavior optometrist in less than 2 weeks to evaluate whether the issue is vision-related (issues other than myopia or astigmatism, which are treated with his glasses).

For OT, he is slowly improving. He wore a weighted vest for the entire session today. His ability to trace letters seems to have improved. He will start a different handwriting without tears book soon in OT.

At home, we are still seeing tantrums and self-regulation issues resulting in either failed or successful attempts at hitting, kicking, spitting at, and verbally exploding at Olem, HB or me. Most can be easily mitigated but we had one on Wednesday that lasted for 20-30 minutes at home. Currently, we are exploring the technique where we remove him from the situation, briefly explain the situation, take him to a place to calm down, and ask him to let Olem or me know when he is calm enough to chat. When he says he is calm, we go back to that place where he was calming down and discuss the situation and appropriate next steps for him to be able to rejoin in the previous activity. So far, this is working pretty well. CB targets anyone around when he is upset so we leave him alone until he is calmer. This technique only works if we can remain calm during it.

On another note, he and HB play together so much and for the most part quite well. They go on so many adventures outside, build different flying contraptions and rolling vehicles out of legos, make up chasing games, and really enjoy playing with each other.

Updated blood work is just a few weeks away so I will have more results to evaluate. This lab work request also contains some stool and urine samples and additional blood work (compared to normal). This is due to a pediatric gastro we are considering and these are tests he requires his patients to get before seeing him.

CB loves most of his therapists and wishes he could see his proportionate share speech therapist every day.

 

 

October 28, 2016 Education, Growth and Progress, Therapy 0 Read more >