Dyspraxic Journey

Dyspraxic Journey

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

Latest Posts

Regression – Hitting, Kicking, Spitting, and Perseverating

So this year’s regression totally caught us off-guard. Now, it shouldn’t have since CB’s other major regressions were during the same time of year when he was 2 and 3. I think since we did not see the regression around his 4th birthday, we were hoping we wouldn’t see anymore. Pretty pie in the sky kind of hoping on our part… I think the reality is that we didn’t see around his 4th birthday it b/c we made the huge diet and supplement changes during his usual regression time last year so his body was already going through some major changes. It either masked the regression or his body had to cope with so many other changes, it didn’t even have time to work on a regression.

CB’s regression time is Dec/Jan. His birthday is in January so I don’t know if it is connected to this, adjusting to being on winter break, adjusting to starting back up at pre-k/mother’s day out, the change of schedule during the break, or the combination of all of it. This regression felt quite significant and impacted every part of his life. He hit, kicked, spit, and threw things at friends, parents, therapists, and teachers. His impulsiveness and compulsiveness grew. It seemed like he was on auto-pilot (like when he was younger). He had to have whatever toy his friend or brother had. He had a really hard time being redirected and would just focus on that toy till he got it. Once he got it, he then wanted whatever new toy his friend or brother now possessed. Also, once he started an action, we couldn’t get him to stop midway and make a different decision. For example, if he was running towards his brother to hit him, I could not get through to him to stop unless I physically was there to stop it. Let me tell you, this has been a fun few past few weeks ;). Due to his speech disorder, he has always been more physical since he was not able to communicate his needs/desires in a different manner; however, using his body to communicate in a negative way has been declining considerably as his speech capabilities have been improving. He also started perseverating on specific words. He would definitely say them at times to get attention but he also would say them when he walked into a room, during quiet times, during transition times, walking around, sitting by himself in another room, ok, basically anytime he was awake. He would sometimes say them one time but often he would say them over and over up to 5-10 times. (more…)

February 2, 2016 Growth and Progress, 0 Read more >

My Baby Turns 5

I cannot believe it!! My curious, beautiful, funny, and smart little boy is 5 today! CB has come so far, even since I started this blog. He now has friends he formed completely independent of Olem and me (at school). He continually surprises us like just deciding one night he doesn’t want to wear diapers anymore. That was about 2 weeks ago and he has only had 3 accidents :). Since Xmas, he has really enjoyed playing with legos. He refers to people by name :). He asks if things have gluten in them and understands he cannot eat the food item (although sometimes it disappoints him). He spontaneously tells us he loves us, oh how this warms my heart!! He wants to be a good big brother, although this is challenging.  He still enjoys getting comfort from his brother when he is hurt. He helps get his silverware and drink before dinner as his chore. He just started being able to sometimes take his shirts off and put them on with some verbal guidance. Everyday he is showing us little by little how his mind works and what he is thinking about. I am really pumped about this next year and what all we will learn from him this year! He positively still loves cars and trucks! He loves his therapists. I was just thinking about how I can help him grow during this next year and I think I want to learn how to help him really say what he thinks. I want him to know that his opinion is important and to help him become more self-aware Now that he can express so much more, I want him to learn how to express himself, understand his feelings, understand how his body feels, and to know he is IMPORTANT and CAPABLE.

January 19, 2016 Growth and Progress 0 Read more >

Whole Exome Sequencing Test – Upcoming Appt

Back in October, our family visited the geneticist again to discuss the whole exome sequencing test and to perform blood draws from the entire family. We had made the decision to move forward with this testing for CB. I mentioned this in a previous post at http://www.dyspraxicjourney.com/genetics-testing/. We set the appt to get the results for March 7th. Well, we got a call last week that the results are back and that we can move the appt up to this coming Friday. Of course, Olem is out of town for work on Friday. So, we had the dilemma regarding whether I go by myself or wait for another appt. The geneticist counselor stated that at this point they don’t have any other openings till March 7th. If I go by myself and get the results now, then we will have them for our next visit with our holistic practitioner and for CB’s 5 year pediatrician appt. We opted for me to go on Friday and for Olem to be on speaker phone from his conference.

I am honestly scared and a bit stressed. I know I shouldn’t be and I try to calm myself down, but I know I have been mentally impacted since the call from the genetics counselor. So many questions circulating through my mind, and I keep repeating the mantra “Stay Calm. He is the same son you fell in love with. This doesn’t change who he is. This just helps us potentially understand him better and discover other ways to help him reach his full potential.” I hope I don’t break down crying during the office visit, but we can’t necessarily control these things. A girlfriend of mine who has children with an extremely rare disorder recommended that I get the results before the meeting so I can formulate some questions beforehand. I plan to request them tomorrow. Maybe this will help? I don’t know. My guess is that it will take weeks, months, and maybe longer to fully process the information the geneticist will share with us. I understand that certain markers will be shared that are irrelevant, potentially some with unknown relevance, and most likely some with scary current & future potential.

I used to consider myself strong and fully capable. Lately, I feel definitely lacking, less than, and at times unstable lately. I don’t know if it hormone-related, lichen planus-related (an autoimmune condition that is currently impacting my gums), stress-related or most likely a combination. I am hoping I can remain strong and be properly prepared to accept what I hear and to be as open and actively present as I can possibly be during the office visit. Wish us luck!

January 19, 2016 Tests & Evaluations, , 0 Read more >

The Perfect School

Olem and I (well, especially I) have been struggling with the decision of where to send CB next year for Kindergarten. We will settle on a decision and then I will second guess, and throw in another option. Olem mentioned the idea of writing about what each of us would envision as the ideal plan for CB. Maybe this exercise would help define what we ideally want for CB and maybe help us finalize our decision. So here goes :).

In my perfect world, we wake up around 7:00am, follow our morning routine, and start our walk to school around 8:00am. CB casually strolls to school checking out the trees, cars, the cracks in the sidewalk, and works out some of the morning energy on the way which helps him prepare for the start of the day. The school is a small neighborhood school with a population in the ballpark of 400-600 students. I walk him to his classroom where he greets his 15 or so classmates and his energetic, kind, compassionate, aware kindergarten teacher. He/she greets us at the door, expresses her excitement about seeing CB,  mentions something specific she loves about CB, mentions some of the fun things they will do that day, and gives CB a hug/high 5 or some other physical comfort. The teaching assistant warmly greets CB, as well. The classroom room is setup with centers, visual schedules, a small mostly enclosed sensory area, and open space on the floor. Each child finds out their assigned role for the day. They all know how important they are to the entire class and that they are as important as the teachers. The kids enjoy a schedule with mathematics, reading, social awareness and acceptance, language and writing, recess, music, and pe. When a child has a difficult time, the teachers incorporate positive techniques to redirect the behavior and motivate. The teachers feel supported and have the flexibility to teach to the children’s interest. They also can teach to the different children’s levels. The curriculum allows for children to work on different materials so the teachers do not feel that they have to teach to the middle/lower performing children in the classroom. The teachers feel that the most important values they want their children to learn are 1) that learning is fun 2) everyone is different and that is a positive thing 3) how to be a good friend and 4) that they are loved and supported. For 4 days out of the week, CB attends 20-25 minute ST and OT session. For 2 days of the week, the OT sessions are for the entire classroom and followed by the privae ST session. For the other 2 days, CB receives private OT followed by group ST sessions. If a child within the classroom needs extra help, the teaching assistant is available and happy to help. She will help with anything from how to hold your pencil, to how to share, to how to be a good friend. She tries to provide the help to the entire group where the child resides so he does not feel singled out. This kindergarten teachers and school understand that the children learn through play and plan the curriculum accordingly. Because CB receives therapy in school, he has his afternoons free most days of the week. He still has swim class one day a week, and may choose to have one outside therapy like horse therapy. CB feels confident, supported, valued and happy.

This school does not exist but I think it does help me realize what I think is most important. We will see if it helps narrow the decision.

January 14, 2016 Education 0 Read more >

Great Dyspraxia Article Describing CB

Recently, an article about Dyspraxia by Christian Nordqvist was brought to my attention on Facebook. This writing provides a concise explanation of the disorder CB has which is dyspraxia, a coordination disorder that affects the entire body causing delays in development with speech and motor planning. This disorder can be easily misdiagnosed (ADD/ADHD, lazy, low IQ, etc…), or not even diagnosed at all, especially in the U.S. where it is far less recognized in the medical field. When it is recognized, it is often referred to as DCD, or Developmental Coordination Disorder, which in my opinion poorly represents the broad impact of this disorder.

This article describes CB so effectively and I thought it might be an interesting task to compare the article’s description of Dsypraxia with CB. I pulled the following directly from the article and added my comparisons in italics.

Symptoms of dyspraxia

Dyspraxia symptoms may vary based upon the age of the child. With that in mind, we will look at each age individually below.

Very early childhood

The child may take longer than other children to:

  • Sit.- CHECK
  • Crawl – the Dyspraxia Foundation5 says that many never go through the crawling stage. – CHECK (belly crawled at 9.5 mths and on all 4s at 12 mths)
  • Walk.- CHECK (17.5 mths with PT)
  • Speak – according to the Children’s Hospital at Westmead6, Australia, the child may be slower in answering questions, CHECK finds it hard to make sounds or repeat sequences of sounds or words, CHECK has difficulty in sustaining normal intonation patterns, CHECK has a very limited automatic vocabulary, CHECK speaks more slowly than other kids, CHECKand uses fewer words and more pauses.- CHECK
  • Stand.- CHECK
  • Become potty trained (get out of diapers/nappies).- CHECK (4.25 years old for potty trained during the day, just had first dry nights this week and CB will be 5 in a couple of weeks.)
  • Build up vocabulary.- CHECK

Early childhood

Later on the following difficulties may become apparent:

  • Problems performing subtle movements, such as tying shoelaces, doing up buttons and zips, using cutlery, handwriting.- CHECK (haven’t even started buttoning buttons or considered tying shoelaces, handwriting is very hard, uses fork and spoon with multiple prompts during a meal but does not use a knife – CB is 5 this month)
  • Many will have difficulties getting dressed.- CHECK (can independently put on and take off underwear, put on and take off pants without buttons, put on some and take off slip-on and velcro shoes, take off socks, periodically put on socks, periodically take off shirt) Numerous times he still gets frustrated and asks for help with getting dressed. He can put his shirt on if you get it started. He still cannot plan how to organize a shirt in order to get it in the right position to put it on.
  • Problems carrying out playground movements, such as jumping, playing hopscotch, catching a ball, kicking a ball, hopping, and skipping.- CHECK (catching a ball, standing on one foot for very long, jumping many times, jumping from high distances, skipping, climbing high surfaces, or running very far are all either very challenging or not yet acquired skills)
  • Problems with classroom movements, such as using scissors, coloring, drawing, playing jig-saw games.- CHECK – (all of the items listed frustrate CB and are very challenging)
  • Problems processing thoughts.- CHECK
  • Difficulties with concentration. Children with dyspraxia commonly find it hard to focus on one thing for long.- CHECK
  • The child finds it harder than other kids to join in playground games.- CHECK
  • The child will fidget more than other children.- CHECK
  • Some find it hard to go up and down stairs.- CHECK (He can go up & down stairs independently but not fast and he has to concentrate)
  • A higher tendency to bump into things, to fall over, and to drop things.- CHECK
  • Difficulty in learning new skills – while other children may do this automatically, a child with dyspraxia takes longer. Encouragement and practice help enormously.- CHECK
  • Writing stories can be much more challenging for a child with dyspraxia, as can copying from a blackboard. – TBD

(more…)

January 7, 2016 Growth and Progress 0 Read more >

CB – Almost 5

So, it has been a year since I wrote the original bio for CB. How is he doing now? What progress has he seen? Well, I thought it would be good for me to explore these ideas. CB has worked so hard this year and has progressed beautifully. He is still our happy, silly little boy. He remains just as curious as before and can find humor in just about any situation. Making funny sounds, screaming, and saying words that he finds humorous entertains him to no end. Asking questions every few minutes (if not more often) is still one of his traits. If he is not playing with his cars, you can often find him playing outside either digging in the dirt or exploring our backyard. He loves water, whether it be swimming in it or splashing it in swim class, playing with it while washing hands, pouring it out of his drink, pouring it from one container to another, or just pouring it out of anything.

His speech has improved tremendously. He can express himself in complete, short sentences, although he will still resort to phrases a good bit of the time. His speech therapists are primarily working on articulation, vocabulary expansion, and usage, sentence length expansion, and focus. CB continues to spit or hit when he doesn’t want to do something. Fortunately, he uses his words more often though. A huge step has been to expand his automatic response of “No” to just about any question to include “Ok”, “Yes”, silence, and sometimes a longer reply. He was in the habit of responding No to anything asked of him. It was his default response. If you waited a few seconds, he would many times comply or say another response. I think changing this has helped him also change his viewpoint a little. CB has gone through a stuttering phase. This came about when he started speaking in longer phrases. His speech therapists mention that they think this is due his desire to say something before having it planned out how to say it. He still does it some and I just ask him to take a deep breathe or to slow down. This usually works and he can start getting his thoughts out.

Fine and gross motor tasks still remain a big challenge for CB. He is currently working on writing his letters in pre-k and has started the “Handwriting without Tears” curriculum at OT. It only takes up about 5-8 minutes of OT. Sitting still, holding the pencil correctly, understanding where to start writing, understanding where to hold his body and head in relation to the work he is doing, planning the next stroke, and understanding where he should put his visual focus adds up to a very challenging set of tasks for CB. The hope is that by practicing now will help him achieve more success once he is in kindergarten. CB’s strength has noticeably improved. This has enabled him to endure and enjoy activities in OT like swinging in prone position/superman pose while playing games for 8+ minutes. I haven’t seen this translate into longer endurance during activities like running around and chase or increase his running speed. CB is still the slowest runner of his peers and just not often play games involving chase outside. He can climb higher, jump 1-2 ft down to another surface, peddle a trike, and jump over a low object. He is starting to catch a ball a little better. His visual tracking is definitely improving. You will notice above that I mention him swinging. For the swings at the park, he will now tolerate sitting in the swing with a little movement for about 30 seconds – 2 minutes. He is still not comfortable with that specific movement. (more…)

January 2, 2016 Growth and Progress, , , , , 0 Read more >

Therapy Schedule Update

Here is a quick update on CB’s current therapy schedule and the changes we are making for the start of 2016.

For the fall, CB’s schedule was as follows:

  • Monday – 9:15am-12:15pm pre-k; 1:00pm-2:00pm private speech therapy; 3:00pm-3:30pm swim
  • Tuesday – 8:15am-12:15pm pre-k; 12:30pm-1:30pm private physical therapy; 2:15pm-3:00pm private speech therapy
  • Wednesday – 8:15am-12:15pm pre-k; 2:00pm-3:00pm private speech therapy
  • Thursday – 8:15am-12:15pm pre-k; 1:30pm-2:15pm private occupational therapy; 2:15pm-3:00pm private speech therapy
  • Friday – 12:45pm-1:30pm group speech therapy at school
  • Saturday – 8:30am-9:00am karate

Updates/Changes for the spring:

  • Starting in January
    • Tuesday – 8:15am-12:15pm pre-k; 12:30pm-1:30pm private physical therapy; 1:45pm-3:15pm pre-k (eliminating 1 private speech therapy session a week and adding some more pre-k time)
    • Checking out 2 horse therapy places. Considering adding horse therapy on the weekends and quitting karate. CB is the least excited about karate and it is still quite hard for him.
  • Starting in February
    • Monday – 9:15am-3:15pm pre-k; 4:00pm-5:00pm private speech therapy (adding more pre-k time and moving speech therapy to later in the day)
    • Wednesday – 8:15am-12:15pm pre-k; 2:00pm-3:00pm private speech therapy, 3:45pm-4:15pm swim (moved swim to Wednesdays)
    • Saturday or Sunday – hopefully horse therapy sessions

January 2, 2016 Therapy, , , , , 0 Read more >

Why all this talk about gut?

I realize that it may seem strange to dedicate a decent amount of this blog to my son’s gut issues. So I thought it might be helpful to provide some more resources and context regarding why I have taken this route and spent so much time mentioning my son’s gut over the past year. All the therapies are crucial and I would never suggest just focusing on your child’s gut if they have neurological problems; however, I think it is crucial to consider and explore if your child also has digestive issues, as well. For CB, he had chronic loose stools since he was a baby and through blood work,it was identified that he had numerous vitamin deficiencies, selective IgA deficiency, and borderline iron anemia despite eating balanced, healthy meals. I knew I wanted to help CB’s issues in the most natural way possible. Through diet changes and supplements, the selective IgA deficiency down-graded to low IgA so it no longer classified as an autoimmune condition, all vitamin and iron levels were within the normal range, and his stools were normal most of the time. I’ve noted throughout my blog the specifics but some only took a couple of months to change while others took about a year. In this same time frame, CB has made tremendous jumps with his speech, social interactions, core strength, attention, coordination, appropriate play, and become potty-trained. I believe that my son’s blood work came back with so many issues b/c he had a leaky gut.

What is a Leaky Gut?

The practitioners at SCD Lifestyle provide a good explanation:

“The term Leaky Gut Syndrome is used to describe the condition of “Hyperpermeable Intestines,” a fancy medical term that means the intestinal lining has became more porous, with more holes developing that are larger in size and the screening out process is no longer functioning properly. The fallout results in larger, undigested food molecules and other “bad stuff” (yeast, toxins, and all other forms of waste) that your body normally doesn’t allow through, to flow freely into your bloodstream.

So now that we have the general essentially meaningless definition out of the way let’s find out what is really going on…

The intestinal lining is the first mechanism of defense for our immune system. The outer layers of intestinal cells (epithelial) are connected by structures called tight junctions. At the tips of these cells are the microvilli, which absorb properly digested nutrients and transport them through the epithelial cell and into the bloodstream. During the normal digestion process the tight junctions stay closed forcing all molecules to effectively be screened and only pass into the blood stream through the mucosa cells (think of them like bouncers at the front of a classy bar). For reasons we will discuss later, these tight junctions can become “open” or permeable allowing un-screened molecules to flow directly into the bloodstream (think of it like a fish net with very small holes).”

By making the dietary changes, this has allowed my son’s intestinal wall to heal or mostly heal. What I don’t know at this point is 1) Can CB eat gluten again? 2) If so, do we need to limit it? 3) Or will he need to remain gluten-free his whole life? 4) Will the soy allergy go away? 5) By healing the gut, can it remain healed? 6) Even though we are not seeing any issues with slowly introducing dairy, are there internal problems forming that we can’t see? (more…)

December 31, 2015 Allergy, Diet, & Supplements, , , , 0 Read more >

Why saying CB has Global Dyspraxia helps Me

CB does not have an official diagnosis of global dyspraxia or DCD (Developmental Coordination Disorder). He actually doesn’t have any official diagnosis other than the loose term of speech motor disorder. For one reason, it is hard to get a diagnosis of DCD prior to the age of 5 and some doctors won’t even diagnose till around 7. CB will be 5 next month. Another reason for the lack of diagnosis is that only certain doctors will prescribe a dyspraxia/DCD diagnosis. Many doctors here in the US are not familiar with the diagnosis. The 3rd reason deals with what getting a diagnosis would actually do for the child or family. Here in the US, neither DCD nor dyspraxia are recognized by school systems as disorders so it can still be a challenge to get services even with the diagnosis. On a side note, if you have a dyspraxia/DCD diagnosis for your child, your child should qualify under the OHI (Other Health Impairment) section for special education services. Besides for services at school, it could be beneficial to have the diagnosis for insurance purposes. Insurance is so far covering the therapies CB needs (minus the high deductible and co-insurance…fun) so that is not an issue. For school, we are working around the lack of a dyspraxia diagnosis by getting a ADD/ADHD diagnosis so he would qualify under OHI.  We are also getting an OT eval performed for CB. I feel that at the moment, CB will get the same evaluations and therefore access to the same services he would get if he had the dyspraxia/DCD diagnosis by taking this other route. It would be great if getting a dyspraxia/DCD diagnosis would automatically entitle children to certain special ed services like children with an autistic diagnosis get.

Now, for me, stating that CB has global dyspraxia helps me to have a 2 word description to describe CB’s special needs. I don’t have to go into all the detail about all the different needs he has i.e., speech, fine motor, attention, motor planning, visual tracking, sensory, etc. The term global dyspraxia serves as a great umbrella term that encompasses these conditions. To some parents with autistic children, I state that CB is just off the spectrum. There are a lot of overlapping traits for dyspraxic children and autistic children. When CB was 3, we even took him to a neurologist to confirm he is not autistic.  The neurologist stated that he did not believe CB was autistic but that he possessed enough symptoms that he could diagnose him as autistic if we needed it for insurance purposes. We opted not to get the diagnosis but to keep the option open if we needed it. Many of the kids that CB really connects with are autistic children and in many situations, the parents of autistic children have assumed CB is autistic. As CB has grown, several of his autistic-like symptoms have faded. I know for sure at this point in CB’s life that he is not autistic but dyspraxic. I am not big into labels but this is one label that has really helped me understand my child even better, my son’s teachers understand him better, me describe my son to others so they better understand him, and give me a more focused approach to finding and choosing appropriate therapies and education. Having this label, global dyspraxia, helps make his future seem less scary to me.

December 17, 2015 Worries, Fears, & Ramblings 0 Read more >

Personal Navigator

So for us, we have had help along the way. Not like there has been a person that has helped guide everything we do, but there have been people providing tidbits of help along the way. You know what, I would absolutely LOVE to have a person who guides us through all the steps from identification of special needs to therapy suggestions to diet suggestions to test suggestions to specialist suggestions to best help for working with schools to the questions to ask at each phase to when to not worry and just be. The best name I can come up with for this role is a Personal Navigator. If this person exists, please private message me :).

I think one of the biggest issues is knowing what questions to ask and how to ask them. I wish there was a place to go to get most of the answers and a place to go to help calm your nerves and to help you not to worry. Why does this journey have to feel so unique, complicated, and sometimes lonely? I want others to not have to feel this. I dream that personal navigators will be more common and that these people, whatever their credentials are, will be easily accessible to parents with children with special needs regardless of financial means, physical location, or physical need.

 

December 3, 2015 Worries, Fears, & Ramblings, , , 0 Read more >