Dyspraxic Journey

Tag Archive: dyspraxia

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 >

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 >

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 >

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 >

Therapy Evaluations & Fish Oil Dosage Change

This week was packed with evaluations of CB’s progress in speech and physical therapy. He had 3 different ST evaluation reports completed and 1 physical therapy report. The great news is that he has made huge leaps with his expressive language and only falls a few months behind. This test focused on CB’s comprehension of the questions asked and CB being able to verbally express his comprehension. For most questions, it didn’t matter if he replied with 1-2 word answers and his ST allowed for extra time, minimal guidance, and some substitutions due to his apraxia. He is still about 5-6 months delayed on receptive language skills. The third test was an articulation test and it placed CB at just under 2 years behind. The good news is that this was the first time the test could have even been given. 6 months ago he could not have made it through the test or been able to accurately try to make each sound. His ST also said that he made developmentally correct errors. Basically, that even though he is quite behind, the errors are the expected errors and sound substitutions given his current sound repertoire.

I should step back and mention that the first test administered was the articulation test. Even though I was glad his ST was able to administer the test, hearing the results caused me to feel extremely weighted down, unsure, and like I had a hole in my core.  All the worries started surfacing, “Will my son always be behind?”, “Is he gradually getting further and further behind?”, “Even though he seems to be responding really well to his ST, are we going to have to make changes?”, “If we have to make therapy changes, what are they?”, “Is all this therapy not helping him?”, “Am I failing him?”, “Is that first no tact, seemingly uncaring caregiver right that CB will always be behind and we are not providing enough for him?”, “This feeling hurts so bad and I feel so lost. What do I do?”… Olem and I had to go through some stuff and fortunately vocalized our worries late one night to each other. I think we both felt light again and more like ourselves. We felt like no matter what, we can handle this. Fortunately, we got the results of the other 2 ST tests today and I feel like I am floating on air. I feel hopeful!!!!

For CB’s physical therapy evaluation, he showed some improvement with some of his retained primitive reflexes (like the moro reflex) but started showing signs of retained primitive reflexes that did not seem present prior (like the fear paralysis reflex). CB’s connection with his current PT is just so-so. It is super convenient though b/c she comes to our house for the therapy and she is one of the limited few in our area with experience working with retained primitive reflexes. If we drop a therapy, I think it will be this one. Working with the retained primitive reflexes can be so beneficial though for a kiddo with Dyspraxia.

We lowered CB’s fish oil dosage about a month ago, and upped it back up last week. Just like the past, CB went CRAZY for the several days following the dosage change. Basically, CB would fixate on something and could not let it go. Primarily, it was related to sharing and stealing other kiddo’s toys. He would then scream, kick, hit, and throw a huge tantrum every time he wanted something he could not have. Last Sunday, HB had his first play date at our house with just one of his friends and his parents. In the 3 hours they were at our house, CB threw at least 6-7 kicking/screaming tantrums. Almost all if not all were around HB’s friend having a toy and CB deciding he wanted it. It was soooo hard. At the pool a few days prior, CB had a full-blown tantrum. When CB acts like this, I feel like everyone is judging me. I feel like the other parents think I am a bad parent, my child is totally spoiled, I can’t handle my child, and sometimes look at my child wondering what is wrong with him. I HATE this feeling. I HATE those glances and seeing those seemingly judging faces. During those moments, I wish I had special powers to hide CB and I in a force-field protective bubble. In this bubble, no one can see or hear us, and we can just be ourselves.

Fortunately, I think CB is now on the other side and is now showing the positive effects of the fish oil change. Today, CB seemed to be expressing himself very well. He also seemed more cuddly and mentally quick. He loves watching Daniel Tiger and he even responded to several of the questions in the Daniel Tiger show this afternoon. HB will regularly respond, but CB typically just watches. Before watching Daniel Tiger, we played with play doh and pretend for about 30 minutes. All of this was dictated by CB. CB pretended the house was on fire and we had to save his bears in the living room and then we had to save the cars and other things around the house :). He then proceeded to be a police office and a cowboy. HB remained super HB and helped the entire time. Working through the retained reflexes exercises today was even easy.

Side Note: HB has been in summer language camp for the last 3.5 weeks. He seems to be enjoying it. It was around the same time that he started having more accidents. He has been having 1-2 accidents every day to every other day lately. Sometimes, the teacher or I have showed him that he had an accident. He did not mention it to us.

July 2, 2015 Allergy, Diet, & Supplements, Therapy, 0 Read more >

Feeling Positive

Life is always an interesting and somewhat unpredictable journey. Today, I am feeling positive and excited about what tomorrow holds for me, CB, and our family. I think I am still floating from a really good yoga session earlier and this wonderful iced latte, but I am not going to question it. Oh, and I just realized Portishead is playing in the background. This music feel me with nostalgia and warm feelings. I spent many a day in college sitting in coffee shops soaking up the positive vibes of Portishead’s tunes.

So, I think CB and I are connecting really well these days. He cuddles with me more and wants me included in more of his activities. I think I have been in a better place to handle situations more gracefully and calmly. I have this natural inclination to say “no” to things. It is something I have struggled with in my professional and personal life. For me, I think it serves me well b/c it makes me think about things before I do them and helps me to think analytically. However, in my interactions with others, it comes off like I am finding the negative in the situation, dissing the other person’s idea, or being a Debbie Downer. I am trying to fight my initial urge and say “yes” to more things and to let more things go.

Olem and I had one of those “Things that make you go hmmm…” moments this week with CB. Before I get to this moment, I will provide some background on CB that got us to that point. So if CB is engaged in just about anything and we want his attention, he will most of the time not respond to us until about the 3rd-5th time we say his name. I know part of this is related to the fact he processes information slower than most kiddos his age. At times it is also apparent that he has his mind set on something and will not be deterred until he completes his desired task. It is very frustrating b/c we cannot always get to him and physically touch him to get his immediate attention, and we need him to stop or respond to us soon to protect himself or others. He also will re-enact whatever undesirable behavior we want him to stop doing. For example, if we ask CB to not hit his brother. He will then proceed to hit his brother again. If I say, don’t throw that car. He will throw the car and potentially all those around him. OK, now that you have the background, Olem and I, played a game with CB kind of like simon says. We would say things like “Roll your car towards your dad.” or “Don’t touch your head.” or “Clap your hands” or “Don’t look at me.” You get the idea. In every scenario, CB did the action regardless of whether it had the word “Don’t” in front of it. Now, if we asked CB what we said, he would take a moment and correctly tell us that we told him not to do the action. We therefore know that he knows what is being requested of him, but it seems like his automatic response is to do the action mentioned regardless of the context around it. After a little while, he thought it was silly to do what we said not to do. I get that. After all, we use reverse psychology often to get him or his brother to do something. We could tell initially though that he was trying to play the game properly. So, this is something else for me to research and to see how we can help CB in these situations.

Oh, I love this warm weather we are lately experiencing. Getting to send the kiddos outside to run around and play has been good for all of us.

June 4, 2015 Worries, Fears, & Ramblings, 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 >