Dyspraxic Journey

Dyspraxic Journey

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

Latest Posts

Holistic/Biomed Visit

So far on this journey, the main driving force to figuring everything out from therapies, specialists, supplements, diet, etc. for CB has been me (with a big help from my hubby). I understand that this is how our system is set up. From one perspective, it is quite empowering b/c there are so many options and opportunities for our children. We are no longer in a day and age where we find out our child is unique and we know our child will not have the same education and opportunities as typically developing children. Now don’t get me wrong, there are difficult times and struggles and extra challenges, but our children’s future is not set in stone. We get to help them in so many ways and they get to be whoever they want to be while playing an active role in our society. We are blessed in that way. On the other hand, it can be extremely overwhelming trying to figure out how to best help our children, how to get started, and how to sift through all the options from therapies to specialists (gastroenterologists, neurologists, child psychologists, behavioral psychologists,nutritionists, DAN doctors, holistic practitioners, Functional Medicine doctors, geneticists, etc.) to traditional medicine to biomed to diet changes and on and on. Plus, you have to consider what is covered by insurance and what costs will be totally out of pocket. I am fortunate that I am able to stay home with my kiddos and have the time and means to make the choices we feel will be best for CB. I hope one day that things will be easier for parents with children with special needs. I hope they will not feel lost and overwhelmed and that the resources will be easier for them to locate and access. I hope more practices will be recognized as beneficial and will be covered by insurance. (more…)

December 3, 2015 Allergy, Diet, & Supplements, Tests & Evaluations, , , 0 Read more >

ARD Updates and Upcoming Biomed/Holistic Practitioner Visit

Let me just say that things are going well..oh, except for both my kiddos getting croup and my husband working to overcome his sickness. So, I guess I should say that the ARD we had on Tuesday went really well and tomorrow CB will have his first visit with a highly-recommended biomed/holistic practitioner, yay. To start, at the ARD meeting we had at CB’s school, I really felt like I was a part of the team and that my voice was heard. The next steps were exactly what I was hoping for. Wow, that is so strange to say. I really expected more push back. We didn’t actually make any changes to CB’s current IEP (Individualized Education Plan), but I didn’t expect to. This was meant to be a meeting for me to share my current concerns and to see if we could get further evaluations performed so we will get a better picture of the challenges CB faces. This will help get some of the additional supports CB will need in a general education classroom. They provided me some easy steps to get CB diagnosed with ADD or ADHD without visiting an expensive specialist so he would classify as OHI (Other Health Impairment) , in addition to the Speech qualification he has, in his IEP. Now, do I think CB has ADD or ADHD? Well, I think it is still too early to tell. Is it just a part of the Dyspraxia or is a co-morbid issue? I am definitely not trying any meds to help with his focus, at least for any foreseeable future. I am however wanting to get additional supports at school in place so he will have help with staying on track, completing assignments, and being redirected. Our school, like most schools here in the US, does not recognize Dyspraxia as a learning disability and because of this, you have to get supports in place via whatever route is available to you. For CB, the main things are for him to get help with his speech, attention & focus, and fine motor skills.   (more…)

November 19, 2015 Allergy, Diet, & Supplements, Education, , , , , 0 Read more >

Positive Progress based off Latest Blood Workup

Yay, CB’s progress is continually being reflected in the blood workup CB partakes in every 4-6 months or so. The highlights are that all his iron levels are within normal range, his IgA levels are still rising, his CMP was completely normal, and his homocysteine levels are getting close to the low-end of normal. What does all this mean? His diet and supplements are working!! We implemented the modified diet and many of the supplements based off CB’s original blood workup test results from April last year. You can read more about where CB started from blood workup-wise in my blog at Current diet and supplements.

The number of tests performed with CB’s blood workup has grown since his first one a year and a half ago. On the latest workup, the following tests were performed:

  • CBC w/autodiff w/platelets
  • CMP
  • Ferritin
  • Iron and IBC
  • Immunoglob IgA
  • Immunoglob IgG
  • Immunoglob IgM
  • Immunoglob IgE
  • Folic Acid?
  • Magnesium
  • Lipid Panel
  • TSH Free to Reflex T4
  • Vitamin B12
  • Vitamin D, 25
  • Vitamin A
  • Vitamin E
  • Vitamin K1
  • Methylmalonic Acid
  • Zinc, serum
  • Homocysteine

(more…)

November 3, 2015 Tests & Evaluations, , 0 Read more >

Weekly update on CB late October 2015

So, what’s new with CB? For starters, CB was able to hold the Landau reflex position, which is known as the happy baby reflex or the superman, on his own for 10 seconds for 5 repetitions. His OT and PT include reflex integration into their therapy and this is the fastest progress he has ever made with integrating a reflex. It is probably not yet fully integrated, I don’t believe; however, he went from holding his head up, with supported arms and legs to holding the position on his own in 1 week – WOW! The other interesting thing is that in that time frame, Olem and I both commented about getting the sweetest hugs from CB and that he was quite happy. CB’s OT commented that she has seen numerous times when kiddos work on that reflex integration and either integrate it or make great progress, that they seem happier. Well, it may have been coincidental, but it is awesome. I told CB’s PT and she said it brought chills to her body hearing me talk about him :). Reflex integration therapy is an excellent therapy for dyspraxic kiddos. So many of our kiddos have many unintegrated reflexes and this type of therapy is one way to target these reflexes, which should have become dormant when our kiddos were younger. My son for example started off therapy with most of the tested reflexes as unintegrated.

CB’s OT also commented on how much heavier CB felt. We started CB on L-Carnintine several weeks ago. His appetite grew and he was scarfing down his food in no time, asking for more, and finishing his seconds. It was like he couldn’t eat enough. L-Carnintine can cause increased appetite so I am guessing it is related to that supplement versus a growth spurt. The guy takes after me weight-wise so he can use the extra poundage. A few days ago, his appetite settled back down to normal. Another potential side effect of the L-Carnintine is producing a fishy odor from the sweat glands. Well, starting about a week ago or so, I noticed that CB’s neck produced an odor. The smell came from his ear across the back of his neck and to the other ear. I did not smell it anywhere else on his body, not his underarms, feet, legs, etc. I thought it smelled like BO but a friend of mine thought it smelled more fishy than BO so I guess it is the L-Carnintine. No clue why it is just smelling on his neck. The smell goes away right after a bath and resumes within minutes. I’ll watch it for another week or 2 to see if it goes away.

Last Friday, we had CB’s 6 month blood workup done. A lipids test for cholesterol levels and a thyroid test were added since we had not actually looked at those in the past. Fingers crossed everything looks good. I am really hoping his IgA levels have continued to improve!

The whole family has been suffering from allergy issues. This coupled with the fact that Olem has started suffering from allergy-induced asthma over the last couple of years, which now surfaces 1-3x a year and CB waking up sneezing for months and months now, we have decided to invest in a good air purifier. I hope this helps everyone breathe better in the house, especially at night.

The parent/teacher conference at CB’s preschool was yesterday. They were extremely receptive to my suggestions. It is a very different perspective from what we experienced at the public preschool. At the public preschool, it was like the teacher would appease us by listening but  never actually make any changes based off our suggestions or comments. At CB’s current preschool, the main teacher and 2 teaching assistant’s attended and were basically like please share all your thoughts, and made changes to what and how they were teaching CB within less than 24 hours. They even asked for me to observe each month and share my thoughts, as well as, to meet monthly for updates. It is so much the opposite, that I am still not 100% sure how I feel about it :). Obviously, it is way better than last year. I guess I just want to feel like they know more than me about teaching but that I know the most about my kid. And time will tell how the teaching goes, but socially, emotionally, and physically, CB is doing quite well there. I even think his confidence is growing so it is definitely a much better fit for CB for now!

CB and HB are so pumped about Halloween and trick-or-treating this year! I can’t wait for Saturday!!

 

 

October 29, 2015 Growth and Progress, , , 0 Read more >

Trusting My Gut

The theme for this week for CB is confidence and trusting himself. There have been several situations where he responded to the posed questions with confidence and with the correct answers. However, when another child joined in and started responding, CB would wait to respond till the other child responded. CB would then second guess his answers and much of the time respond with the other child’s answers, even if the answer was wrong. Olem and I have talked in detail about how much we want to help him gain confidence and to be able to trust that he can accomplish whatever is set forth. Yes, it may take a longer time for CB and it may take more work, but he can do it! I want him to stop second guessing himself.

This got me thinking about how I talk about this topic like it is such an easy thing to do – trust yourself, trust your gut. This is something I have struggled with and continue to struggle with. On certain topics, I can come across as quite assertive and maybe even arrogant. I am argumentative by nature and have to work on toning my assertiveness down. On some topics though, I feel I struggle to get my head around all the options and which one seems to be the best one. I have told myself over and over not to second guess myself so much in those scenarios, but I feel that my ability to really make the best decision was limited.  I just didn’t feel like I was able to really see the bigger picture. I would get lost in all the minutia of the data presented and couldn’t really step back, take in all the data, and make that really high level decision. Now, I am mainly looking back at a very specific time in my life, but I feel I learned a lot about myself during those trials and somewhat tough times. So how does this really relate to CB and his confidence struggles?

I wonder if that is how CB feels but on a daily basis. Maybe he can only process so many variables and on a regular basis, there are just too many variables presented. So he either shuts down, focuses on some other distraction, or choose the only option he can process, which in the scenario I presented above may be to choose the other person’s answer.  Who knows if by focusing on the other person’s answer whether he has even forgotten what the original question was and therefore really doesn’t know the answer. CB does need things broken down step by step. He can follow multi-step requests but only certain ones. Many times, we have to speak slowly and repeat them. If the issue is that he is having to process too much, then the obvious answer is to provide an environment with the least distractions and to not test CB’s capabilities in this type of fashion. It is educational and beneficial to interact in the group setting and I think he can still learn in those scenarios; however, it may not be fair to access his knowledge acquisition in that same setting. So, in some scenarios, maybe it is not an issue of trusting his gut. Maybe, he is losing sight of what his gut is telling him before his gut has a chance to speak. And for many others, there is the issue of CB learning how to listen to his gut and to trust it. We will continue to provide more options for CB to be independent and feel success in his capabilities. And we will continue to try to understand where CB is coming from and to try to meet him at his level and to find new and different ways to help CB learn and grow.

October 22, 2015 Worries, Fears, & Ramblings 0 Read more >

Walk for Children with Apraxia of Speech

Our local Childhood Apraxia of Speech walk was this past weekend!! It was such a success. We had a wonderful turnout of family, friends, and therapists to support CB! He absolutely loved the attention and the fact that all these people came out just for him. It was also so comforting that we were able to talk briefly about the meaning of the walk and why our friends and family were coming out to the walk for CB. We told him that they were coming to show their support for all the hard work he has spent this past year working on making his sounds and words. We mentioned that other kids were being recognized too for all their hard work. I mentioned that he has Apraxia and that it makes it a little harder for him to say words and make sounds. This is honestly the first time I have really told him. We have used the word Apraxia before but never provided any info around it. Also, in the past, CB would not have tolerated even hearing about it. His focus and interest was isolated to very concrete, tangible concepts that either needed to be in our immediate presence or something would be in our immediate presence within minutes. If we wanted to describe something, he would listen to 1-2 sentences. If he wasn’t interested, he would sometimes check out a few words in. As of late, we can talk about things that are weeks to months out, and he can understand that and get excited. We have been talking about Halloween with CB and HB for the last few weeks. They are both so pumped. It is awesome that it is still 2.5 weeks away and the interest and excitement has remained. Ok, I guess I will get off my tangent. We invited friends and family back to our house to continue the celebration. I hid CB’s cars the night before and the interesting thing is that he didn’t even ask about them till 1-2 days later. He typically has to have his hands on his cars within reach. Well, by hiding the cars, I think it helped keep CB more engaged. He played with his friends the whole time they were there!! It was such a special day for CB. Oh, I love that boy!!

The Childhood Apraxia of Speech walk helps raise funds for CASANA (Childhood Apraxia of Speech Association of North America). They are a great resource and have helped my family a lot on our journey. You can check out more about them at http://www.apraxia-kids.org/about-casana/.

October 15, 2015 Growth and Progress, 0 Read more >

Plans for Kindergarten?

CB is just a couple of months into Pre-K and I am full-swing into figuring out Kindergarten plans. Why the hurry? Well, that is actually a good question. For about 1.5 months, I felt like I had to know NOW and if need be, we would move. We actually considered moving out of state. Since Olem works from home, we theoretically can move anywhere. The services in our state are not great so we thought maybe we would move to another state with better services. This sounded good…in theory. The problem was that there were many other problems that arose like having to fly to visit any family, the bitter-cold winters, the crime-rates, the super-conservative population, or the much higher cost of living. We came back to the revelation that we live here for a reason – we love it! And, we can’t think of another place we would rather live. So with that in mind, we looked into moving to other parts of town with the idea that their public schools would be a bitter fit for CB. Our elementary school is really close by but it is also way over-crowded. It is hard for me to picture CB fitting into that type of school system. I know it depends a lot on the teachers but I also know how well the teachers are supported also plays a big role.  CB receives group speech from our local elementary school so we are getting a bit of feel for how the school works. Olem and I are also checking out other public schools and private schools so we can get on a waitlist if needed or get in an application at the appropriate time, if needed. Olem and I both attended public school and felt like that our children would follow that same route. Now, here we are seriously considering private school, at least, for Kindergarten. We also heard that HW is already required in Kindergarten and that they already start prepping the kids for the state testing. We need to confirm these b/c they seem quite disheartening. Isn’t Kindergarten for kids – very young kids. I have heard several parents speaking to the issue that Kindergarten is becoming the new 1st grade. The kiddos are expected to be able to sit still the whole time, practice test-taking on the computer, be able to start reading, and complete regular homework, all while cutting free-play and a focus on nurturing the curiosity of kids.  As of late, I am about 90% sure CB will attend private Kindergarten. We will keep touring schools over the next couple of months and I feel confident one of these schools will rise to the top and make the decision easier for us. CB’s pre-k is great but it is about 30 minutes away so we ideally don’t want to make that drive every day, again next year.

October 15, 2015 Education, , 0 Read more >

Motor Cognition Lab Testing Results & Nutrition/Supplement Updates

The testing at the motor cognition lab went well. CB was easily redirected and tried to a certain degree on all the activities/tasks requested of him. I got the chance to observe the testing and was impressed with CB’s skills on the verbal component of the testing, his tossing skills, and with some of the comparison components of the non-verbal portion. Prior to the moment of testing, we were unaware that administration of an intelligence test was planned. Many times intelligence tests may not accurately reflect your child’s mental capabilities when they have verbal difficulties and/or motor-planning issues.  Since CB is younger than most of the kiddos they test, there were only 2 tests they administer that applied to CB. One was an intelligence test, Kaufman Brief Intelligence Test, 2nd ed. (KBIT-2), and the other was the standard test provided for evaluating motor skills for a child suspected of DCD (Developmental Coordination Disorder), Movement Assessment Battery for Children, 2nd ed. (MABC-2).  We also completed a parent response test related to his sensory needs. Some positive findings were that the intelligence tests prove that CB’s motor skills are not due to a lack of intelligence and that the researcher was impressed with the progress CB has made since we last talked. We knew that CB is an intelligent boy and that his motor-planning issues are not related to a mental deficit. It is nice to see that reflected in the testing, as well. The results of the motor test still conveyed a severe issue with motor skills, but the researcher felt very optimistic about his suspected prognosis. She wants to test him again around his 6th birthday and she thinks the gap between his skills and a typically developing child’s skills will more closely align. She also thinks CB will eventually be mostly indistinguishable from his typically developing peers. This is all fantastic news! It doesn’t mean we are able to lay off any of his therapies or diet restrictions but what it does mean is that the therapies and diet ARE HELPING!

(more…)

October 8, 2015 Allergy, Diet, & Supplements, Tests & Evaluations, , , , , , 0 Read more >

Genetics Testing – Whole Exome Sequencing

The decision has been made to move forward with the Whole Exome Sequencing (WES) genetic test. We have waffled back and forth on this one several times. CB had some initial testing done via the CMA (chromosome microarray) and everything came back negative. CB’s pediatrician suggested we move forward with the WES, but the neurologist suggested we don’t mess with it. The geneticist suggested we don’t move forward unless we have something more specific to look for. We felt comfortable with holding off on the genetics testing. This lasted until we heard so much about it at the Apraxia Conference in July. They talked a lot about the FOX2P gene and a deletion within chromosome 7 within the 7q31 region. I then felt compelled to look into it further. Because this is really just starting to get more recognition and more parents are recently doing this type of testing, the information about this gene and several others is somewhat limited. The belief is that this gene mainly impacts language and speech. Since CB has global issues, not just related to speech and language, then we don’t know if he could have this deletion and something else. Or if it would just be something else. While researching this gene, Olem found another gene that could be impacted and would provide an explanation for a whole array of CB’s and HB’s differences. The PAX2 gene is expressed in primitive cells of the kidney, ureter, eye, ear and central nervous system. CB has issues with his kidneys, ureter, eyes, and CNS. We are not sure about ears. The interesting thing is that HB also has issues with his kidneys, ureter, and eyes. So far, we haven’t seen any issues with his CNS, but the severity and impact of the gene duplications/deletions is variable.

Some of the potential issues/findings are

  • Ehlers-Danlos-Syndrome
  • skin & joint abnormalities
  • kidney and urinary tract abnormalities
  • ocular abnormalities
  • CNS abnormalities
  • Renal coloboma
  • sensorineural hearing loss

It is definitely a mixed bag when it comes to genetic testing. You can find out all sorts of information that you may not know what to do with. Additionally, you can find out things that are likely to happen or that have a potential to happen. However, your child may end up with none of the issues that are presented as possibilites. This can cause extra worry that may not be needed. However, we feel that by completing the genetic testing, we will have a better picture as to what is impacting CB. Also, the findings may be useful for getting CB additional help with school.

We will see how this goes, but we are trying to prepare ourselves mentally. We hope to just use the information that is currently relevant and just keep the other information on file but nothing we act upon.

September 24, 2015 Tests & Evaluations, 0 Read more >

Motor Cognition Evaluation Planned

I am thrilled as we have a motor-cognition evaluation for CB scheduled for this week. One of the top researchers of DCD (Developmental Coordination Disorder – mostly equivalent to dyspraxia in the medical field and is listed in the DSM) in the area has offered to evaluate CB and to share her thoughts about his skills. We really aren’t sure what to expect from this, but hope to find out some things we have not known to look for. It would also be good if she were to provide an unofficial diagnosis. She does not have a medical degree so she cannot officially diagnose him. She is quite knowledgeable in the area, which is rare to find. I have my fingers crossed CB is in a good place and the evaluation accurately reflects most of his skills.

We hope the evaluation will help for next year when CB enters kindergarten. Right now, his IEP just lists that he has speech issues and that is it. We hope this will help provide concrete evidence that CB needs more. His private OT and PT evaluations should help too. We just want to provide as much documentation as possible come the spring time when we meet again for his next ARD. We also need to keep Warren Fried in mind as it would be good to have support during the ARD. The school CB is zoned for mentioned that their approach would be for CB to not get extra help and then if the teacher identified a need, then they would perform additional evaluations. This is so typical of public schools. It is the perspective of let’s wait and see if a child fails, and then provide extra help. This is obviously not going to be our approach, as the parents, and we will work to ensure CB is set up properly with the right services before the 1st day of kindergarten. All of this is assuming we decide to enroll him in public school next year. That matter is still up in the air and I believe a decision will not be made till the springtime.

Bring on the evaluation!! Feeling optimistic!

September 24, 2015 Education 0 Read more >