Dyspraxic Journey

Tag Archive: preschool

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 >

Plans for Kindergarten?

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

October 15, 2015 Education, , 0 Read more >

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 >

Preschool Update

Just when I think we have settled on something, I start questioning things again. Olem and I toured another preschool about 25 minutes away from the house. This preschool caters to developmentally typical kids and to kids with special needs. I didn’t expect to love it. I thought “I have heard good things about this school but it is quite far away. Olem and I have to love this school b/c it is quite a drive.” To my surprise, we both love it for so many reasons. The biggies are 1) Olem & I feel we can be actively involved in CB’s education, 2) They provide flexible scheduling so CB can attend 4 days and be off on Fridays. Olem & I also determine how many and what hours CB attends, 3) They track each of CB’s skills and chart/monitor them regularly so we will have a much better idea of CB’s progress and current skills, 4) They incorporate more outside playtime and prioritize it, 5) They are reasonably priced, 6) The classes are a mix of boys and girls, 7) The primary teacher has so much energy and exudes positivity, 8) Parents can drop-in and observe anytime, 9) CB interacted well with the other kids and very well with the teacher during his first trial day, 10) The teacher has time built in to work with kids 1-on-1 to work on skills were they need extra guidance, and 11) The teachers are trained in ABA therapy and know how to positively change behavior. (We hope this will help CB with his confidence and perspective. He currently tells us about the negative things that happen at school. We hope he will start telling us more about the positive things that happen. If his focus does not change, maybe the ABA trained teacher can help us understand why he focuses on these things :).)

Unless something changes, CB will not attend PPCD next school year and will attend Petunia Preschool instead.

July 2, 2015 Education, 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 >