Dyspraxic Journey

Growth and Progress

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 >

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 >

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 >

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 >

Test results from Organic Acids Test (OAT)

So, after 7 months, CB finally peed in the cup needed for the Organic Acids Test. We actually ended up taping the plastic bag Great Plains Lab provided in the middle of the night. Come early morning, he had a slightly wet diaper but nothing in the bag…argh. So I reattached the bag and CB slept a couple of hours longer. The bag ended up not collecting urine, however, to our surprise, CB wanted to pee as soon as he woke up. He even peed in the cup – yay!! Small achievements :).

Well, we got the results back and it is not surprising that the report indicates excessive yeast and bacteria in his gut. You can view the results at OAT Results. Additionally, he may be low on serotonin and need L-carnitine supplementation. Based off the results and info we already knew, we plan to implement the following supplement schedule.

Morning

  • Multivitamin
  • GSE or garlic extract
  • NOW L-Carnitine (start with 500mg a day) (UPDATE: didn’t start this till 10/5 and started with 250 mg)
  • Fish oil
  • D-3

Afternoon

  • Probiotic

Nightime

  • Oil of Oregano

Daily

  • Limit sugar/carb intake (UPDATE 10/7: begin limiting oxalates)
  • Drink lots of water

We have to consider whether we want to add 5-HTP supplements, but I read it can cause seizures and gut problems. 5-HTP was recommended due to his lower serotonin levels and high High quinolinic acid / 5-HIAA ratio.  That doesn’t seem like a reasonable risk. Will definitely need to research more.

Some good news is that CB seems to be able to ride a tricycle pretty regularly now. He just sometimes needs help with initiation. I just now need him to be successful at home :).

We are still seeing tons of verbal growth from CB. He sometimes emits responses with up to 7 words. His STs are also happy with his progress. At this point, CB will get 4 days of private ST and 1 day of group ST through the school system. He also gets OT 1 day, PT 1 day, swims another day, and has karate on the weekend. He started a private pre-k last week and attends for 15 hours a week. I believe he is with the 3 year olds right now academically but he is progressing and really enjoying himself. I am really happy with the schedule we have lined up this year, even though we are driving all over the place Monday-Thursday :). We know this is just the plan for this year and I have a feeling he is going to grow tremendously in all areas. Both his OT and PT are big proponents of reflex therapy and they know each other. They plan to collaborate. We also implemented a therapy journal and so far I think it is very helpful.

It feels good to be in a positive place :)! With our kiddos and I guess life itself, we take it moment by moment. When we have these moments of comfort, it feels so good to just relish in them and appreciate where we all are. The future is unknown and all we can do is put the wheels in motion now to help our children be better prepared mentally, physically, and emotionally for what life deals them.

 

 

September 3, 2015 Growth and Progress, Tests & Evaluations, , , , , , , , 0 Read more >

Dyspraxic/Apraxic Inconsistencies

One of the common characteristics of someone with Dyspraxia/Apraxia is the continual inconsistencies that exist in many to most parts of their lives. With CB, this is not only apparent with his speech production, but his word retrieval, short & long term memory, processing speed, fine & gross motor skills, tracking speed, ability to sense the need to pee prior to actually peeing, and other areas. When all cylinders are firing and CB is on the top of his game, many people might not even notice CB’s differences, other than his limited speech. When things are off, then everything is just plain hard for CB, all the wrong words come out, getting his body to move in the desired way is quite difficult, CB will get stuck in repetitive patterns (like just saying “No” over and over and over.) and CB will even be very reluctant to do things he has “mostly mastered” in the past. For most days, CB has many struggles and the easiest thing can seem so hard for him. For example, CB has been putting his own underwear on for 7 months and still asks us to help on most days.

I have some tendencies on the dyspraxic side including issues with word retrieval, processing information at a slower pace, walking into things, tripping over nothing, and performing tasks at a slower pace. When I am tired or stressed, it is basically impossible for me to say every word in every sentence correct. I will just skip over the word I can’t think of or get stuck where I just say the wrong word each time even after being corrected a time or two. I feel that it is almost impossible for me to speak 100% correct at those times and just hope for understanding from those around me. Now I am just trying to imagine what it would be like if this feeling of impossibility existed within me for everyday tasks on a consistent basis. What would others feel towards me? How would I feel about myself? How would I feel about trying new things? Would I feel that people feel sorry for me? Would I feel less than others? I think I need to remind myself of this often when I am not being as understanding as I should with CB. I also need to continually ask “What would help me to feel more positive about myself?” and to try to always find ways to help CB in this area.

For CB, one interesting change is that his vowel sounds have been quite consistent for the past 6 months or so. This same issue still exists for some consonant sounds, but it seems like the more he practices the more consistent he is becoming with his consonant sounds, as well. It is interesting b/c I am wondering how does something move from the inconsistent to the consistent and stay consistent for the dyspraxic person? Does enough practice make the neural pathways for certain sounds, movements, words, etc. so defined that they become a consistent part of the dyspraxic’s mastered capabilities? Can I hope that CB will not always struggle with so many parts of his life? I know it is realistic for him to be able to perform many everyday tasks without thought, but will most things actually become “easy” for him? Will he always struggle with certain fine motor tasks like writing or being able to follow the lesson in class or easily communicating to even his closest friends or physically keeping up with his friends?

So I am currently struggling with the knowledge that CB needs PRACTICE, PRACTICE, PRACTICE and with the knowledge that CB also still just needs to be a kid. How do you ensure to get enough of everything in but always still allow for CB to have his childhood? I know I am not doing enough at home right now, especially since it is summer. However, I hope to create more of a balance. I need more strategies for having play actually be PRACTICE, PRACTICE, PRACTICE but hidden so CB is not aware. My next steps are to get more iPad apps that are targeted towards speech production and concepts that CB needs to work on. So, I know I don’t have the answers, but asking these questions helps put me on the path to getting the info I need to take the next step.

Side Note about Health: CB has what I think is a yeast infection. He got a chigger bite (at least this is what we think) on his penis. About a week later, he developed the ring around his anus. In the past, this ring has indicated a yeast infection. I have been treating the yeast infection for the last 5 days with no progress. I have treated it with coconut oil, some Eden’s salve, and applied some hydrocortisone to help with the itching. Hopefully, we will see some progress or I will have to take him in to the Dr. We are out of state right now, so I have been hesitant.

July 23, 2015 Growth and Progress, , 0 Read more >

The Little Light Switch and Nutrition Report Update

Just like everyone, CB has his on days and his off days. Well, lately his behaviors have been wavering quite a bit so it is more like he has his good moments and bad moments. Yesterday during his OT session, he was so positive and took everything head-on. He laughed while working with the OT on the spinning board. He actually was laughing. Just a few months ago, he was super scared and required the security of the OT riding with him just so he could tolerate it for a few spins. Whatever the OT suggested, he was on board and didn’t put up his usual walls. Most of the time for CB, his first reaction to any suggestion is no. He immediately jumps to the “I can’t do it” mentality and gets frustrated from the get go. We are currently working with him to try to shift his perspective, calm down, and try the task a few times before getting frustrated. So that was a very positive and “on” moment for CB. Today during swim class, he was totally off and sensory-seeking. He was moving the entire time and either splashing, putting water on a classmate, dumping over swim container baskets, or just not paying attention. He even was pretty off when he was in the water with his swim teacher. It is so hard to figure out what CB needs to feel focused and comfortable. Both his OT session and swim class immediately followed a nap so it isn’t like for one class he was really active beforehand and not for the other.

On another note, we got his nutrition report back and he is not vitamin-deficient anymore – yay! Now, he is still a little low on iron based off his ferritin and UBC levels, but the values continue to increase. His Immunoglobulin A levels have increased a bit. They are still low but he has moved out of the selective IGA deficiency range. We know he can produce some IGA, at least. He also had quite a low homocysteine level, slightly low WBC, slightly low carbon dioxide, slightly high vitamin e, and slightly high vitamin a levels. So most likely he still has some inflammation or bleeding. We still haven’t done the organics acid test b/c it requires the patient to not eat apples, pears, grapes, cranberries or their juices w/in 24 hours of providing the sample, and to pee in a cup first thing in the morning before eating or drinking. This is honestly too difficult right now to take on. We tried in early Jan and it was a disaster. Once CB gets in the habit of peeing in the morning before breakfast, then we will try it.

Tomorrow, if all goes well, CB will have his blood drawn for the food and seasonal allergy test. We know CB is allergic to processed soy and has seasonal allergies just based off observation. He is also battling a rash on his bottom, which appeared on and off for several months, and has shown symptoms like he may have some other food allergies. We will see if the test tells us much.

For a therapy update, CB’s ST has started incorporated straw therapy a week and a half ago. CB thrusts his tongue out when drinking from a straw. In regards to the PT developmental exercises I am performing at home with CB to work on integrating his retained primitive reflexes, this is a challenge. CB puts up a fight almost every time we perform the exercises. I need to work on a new strategy so it is not a battle. He typically doesn’t actually mind most of the exercises once we get started. It is the starting part that is so hard for him.

Glowing Glances: We visited a new park and a new children’s museum during a trip we took this past week and CB owned the playscapes. He climbed new play gyms that were not just like the ones he has seen at other parks. For CB, he has to perform tasks over and over and over before he can be successful at a task. Even then, he can forget how to do something depending on the day or environment. So it was so encouraging to see him be able to use his skills he has used in other contexts and apply them to new situations and environments. He also regularly says “of you or of ew” when prompted. Even though it is prompted, it still fills me with joy to hear him repeating the phrase “I love you”. Oh, and he regularly thanks me ” tank you or tank ew” for dinner and says “ih good”. 🙂

May 7, 2015 Allergy, Diet, & Supplements, Growth and Progress, Therapy, , , , 0 Read more >

Let’s start from the beginning

CB is 4 years old …

For this week, let’s start from the beginning.

CB’s dad and I had mutually decided that we wanted to add a new addition to our small family of 4 (Olem, our 2 dogs, and me). We started to try to conceive, but my body decided to get all out-of-whack. After a couple of months, my body situation returned to normal but Olem’s schedule was extremely hectic. We decided to stop trying and to wait till we were both in a better place. The next time we decided to try to have a baby, CB was conceived with 2 weeks of trying. The pregnancy was a happy and fulfilling one. It was one of the happiest times of my life. The pregnancy itself was a little noteworthy. I had two yeast infections and took a medicine prescribed by the south american OB we saw for our first ultrasound called Icaden. We were traveling extensively and on a work hiatus when I got pregnant. I had placenta previa for most of the pregnancy but the placenta moved out of the way by the time CB arrived. For the last several weeks for the pregnancy, I had polyhydramnios. At 42 weeks and 1 day, I had to be induced b/c CB was not coming out on his own. I was given a low level dose of pitocin and the Dr broke my water. Labor was on the short side, 6 hours, and my midwife and her assistance were there to help the whole time. I stayed mostly relaxed throughout labor. During child birth, the umbilical cord came out while CB was exiting my birth canal and the Dr decided to cut the cord at that time. CB was born and turned blue right after being placed in my arms. After a couple of minutes (and after Olem began talking to CB), CB cried out and his color returned to normal. He was then placed back in my arms and we just stared into each other’s eyes. I still remember the extreme joy and connectedness I felt at that moment. While in the hospital we hardly slept because Olem and I just wanted to watch CB. The only time he left my sight was when Olem went with him and the nurse to perform a couple of tests. We were so excited about our new beautiful boy. I had lost a lot of blood after CB’s birth because my placenta had to be manually extracted. We had to stay in the hospital an extra day because CB was no longer pooping. It turns out he was severely tongue-tied. At 6 days old, we had his frenulum clipped. I should note he never had problems latching on. He just had problems latching on properly initially since his tongue would only extend to the back of his teeth. I also received numerous sonograms since I had placenta previa and then polyhydramnios.

The first weeks were a bit of a blur. I would nurse while my husband fed me from the food my mom had prepared for us. Olem took care of all the diaper changes, putting CB in his napper, and picking him up. It took 2 weeks before I had the strength (due to the low iron from the blood loss) to carry CB around.

We enjoyed our new beautiful boy and learned to function on little sleep. CB was a good baby and a pretty easy baby, as far as babies go. He enjoyed laying on the playmate and watching the lights and spinning toys, swinging in his swing, going for strolls in his stroller, and riding in his car seat. By 2.5 months, he was sleeping through the night and we moved him to his crib in his own room. One mom had noted that CB made being a baby look easy. What CB did not like was being carried in a sling or carrier on me or belly time. I had a wrap, sling, and 2 baby wearers. It took until CB was 6-8 months old, before he would tolerate me carrying him in one of these for more than a few minutes. He has always loved the water. He was a very happy baby. Everyone always commented on this, as well.

Promising Progress: Olem and I feel even more certain that Global Dyspraxia is what CB has. The DSM V states it as DCD, Developmental Coordination Disorder, but that only accounts for the fine and gross motor planning issues. If we go with the DCD diagnosis, then you could say he has DCD with Apraxia, sensory issues, visual issues, and auditory issues. Global Dyspraxia seems to cover his verbal dyspraxia, motor, coordination, balance, sensory, visual, slow-processing, focus, attention, and low frustration tolerance levels. He also has overall hypotonia (low muscle tone), which is common in DCD and Dyspraxia but is not required. It is still nice to have a more concise unofficial diagnosis.

April 18, 2015 Growth and Progress, , , , , , , , 0 Read more >

CB’s Evaluation, Therapy, and Treatment History

CB is 4 years old …

I touched on CB’s diet in an earlier blog, but I don’t think I have gone through CB’s evaluation, therapy, and treatment history.

CB was 10 months old when his daycare provider informed us that CB was developmentally behind and did not seem to catch on to things like his peers. This was extremely hard to digest.

CB’s first introduction into the therapy world was with a warm, yet challenging Physical Therapist. He was 15 months old. She helped CB learn to walk. He started walking (ability to walk across a room) at 17.5 months. His PT would push him further than I ever would but she knew just how much to push him to help him grow and move past some of his frustration. It was a good experience and we ended therapy shortly thereafter.

CB started gymnastics at around 19 months old. We thought it pretty much worked kind of like PT as it got him moving and trying new and different physical activities. He hated the big parachute for most of the year and needed a lot of herding to keep him somewhat engaged.

The month after CB turned 2, he was evaluated by a PROMPT speech therapist and given the diagnosis of a moderate receptive-expressive language disorder and a moderate-severe neuro-motor speech disorder.  He started PROMPT speech therapy the following week 1x a week. The next month, Early Childhood Intervention (ECI) evaluated CB and determined that he had a significant speech delay. They started their services within the month and came to our house 1x a week. The ECI interventionalist helped CB with speech and social skills (i.e., sharing, taking turns). After 3 months of private ST, it was determined that the PROMPT speech therapist, although nice, was not pushing CB enough. We decided to end private ST and continue with just ECI. About 2 months before CB turned 3, a licensed ST from ECI started coming to the house 1x a week, as well. CB progressed but at a pretty slow pace. ECI evaluated CB for OT help but he was not far enough behind to get help. Although, I think if I had replied more accurately, he would have qualified. As a parent new to the special needs processes, I responded to most things with the best case scenario response. I think I replied that he ate pretty well with a fork and spoon. He still doesn’t eat well with a fork and spoon. It is still challenging and he gets food all over himself 9 out of 10 times when eating. ECI was helpful in training us how to talk to CB and how to play in a more helpful manner. My husband and I are not huge talkers so it felt very unnatural to talk about what we were doing all the time and to repeat what CB was saying. I think this information helped us tremendously and helped CB’s confidence. When we started saying what we understood him to be saying and not phrasing it as a question, I think he started to feel that we really understood him.

At 2 years 11 months, the school district evaluated CB and determined that he qualified for the PPCD (Public Preschool for Children with Disabilities) program due to his delayed speech. For his school district evaluation, he mainly produced 2-3 sounds for everything. Most of his responses were bah, buh, or duh. When the evaluator asked if we thought the evaluation was representative of his skills, we responded proudly that we thought he tested well because he had tried to answer every question with a response. He normally didn’t do that. He many times wouldn’t even provide a response when you asked him to say a specific word or to repeat after you. CB received 2 private ST 15 minute sessions and 1 group ST session at PPCD. CB also started private ST at the same time 1x a week. 2 months later, CB started taking Nordic Naturals Fish Oil, Probiotics, and a multivitamin. AT 3.25 years old, CB’s pediatrician approved blood work due to CB’s chronic loose stools (sometimes with undigested food bits) and developmental delays.

During the summer, there was no PPCD so CB attended a language camp for a month. Then he took a month long break from therapy because we were out of the state traveling. He still continued to progress during the break. When the fall semester started up, CB moved to swim classes since he could not move up in gymnastics since he was not potty trained. I am so thrilled the switch was made. He absolutely loves his swim class and the class is only 2-4 kids total each class. He also started private OT services 1x a week and increased private ST to 2x a week. CB also started karate. It is a class for kids with special needs. At 3.75 years old, I determined from the blood work performed earlier that year that CB had a much higher than average chance of being celiac. The next day, our household went (GFCF) gluten-free and casein-free. Within 2 months, we saw improvements globally for CB from speech to gross motor to fine motor to sensory awareness (he could feel temperature changes outside). Our household also went soy-free within 1.5 months of going GFCF b/c CB started to present with a soy allergy. His ST sessions at PPCD remained the same. In March, we added Physical Therapy to his schedule to focus on integrating his retained primitive reflexes. He has a long list of unintegrated primitive reflexes. She also works on other gross motor skills, as well. I perform the developmental exercises at home anywhere from 2-6x a week. For most of the exercises, I have to do them in passive mode. Surprisingly, CB handles his schedule quite well and enjoys all of the activities.

Some things we have learned along the way 1) the PPCD structure has been extremely helpful for improving CB’s executive function, focus, attention, independence, social skills, speech and potty-training skills. 2) CB has visual, auditory, gross motor planning and execution, fine motor planning and execution, coordination and balance, food sensitivities, speech, and sensory issues 3) to listen to CB and to work within his limits and abilities 4) stop/change therapy if it isn’t working 5) seek answers and ask questions 6) even though we have heard it over and over again, we are our child’s biggest advocates.

Positive Progress: 1) CB is now completely in underwear except for diapers at night. He has been wearing underwear at school since the beginning of Dec but continued to have accidents on a regular basis. We let CB direct when he was ready to start wearing underwear at home and that is working out well. He also decided this week that he doesn’t want to wear diapers during naptime. He still needs quite a few reminders so that he pees in the toilet, and not accidentally in his clothes or on the floor. He even had 3 days accident free. Yay!!

2) We arranged to meet with an expert in the dyspraxia field in the upcoming weeks! We also have talked with a director of a motor planning and coordination lab. We are feeling very positive this week and feel we are moving in the right direction.

3) We upped CB’s fish oil earlier this week. He is now taking Nordic Naturals Omega Complete liquid form .He was CRAZY for about 2-3 days. However, his articulation, fluency, and the amount of language he used improved. He also climbed a new type of monkey bar about 6 -6.5 feet tall (4-5 times) to get on a playscape.  It seems like in the past, the days/weeks or so following an increase in fish oil, CB makes a big jump cognitively, physically, and verbally. We then see a little dip and then a leveling off at a higher level from where CB started.

Low: CB still has light shiners under his eyes, a rash on his bottom, and some digestive issues periodically. Arghh…we have made quite a few diet changes but we still need to keep tweaking and testing to see what is still ailing CB.

April 15, 2015 Allergy, Diet, & Supplements, Education, Growth and Progress, Therapy, , , , , , , , , 0 Read more >