Dyspraxic Journey

Education

1st Grade Here we Come

CB starts 1st grade in a few days! We have more supports in place for this year so I hope this will help CB to have a successful start to this school year! I am feeling nervous which is to be expected for any parent. Will he like his teacher? Will he make friends? Will he feel supported and have the confidence to try his best? How will he handle the increased awareness that he struggles more than most his peers to learn, to write, and to perform basic math? Will he continue to like school? Will having his younger brother at school this year help him? Yep, HB is starting school this year too! I am optimistic that having them both at the same school, for the first time ever, will be a positive experience for both of them.

August 18, 2018 Education 0 Read more >

ADHD Meds – Will they work?

We decided to try ADHD meds after our other efforts to improve CB’s attention did not help. His neurologist prescribed the liquid fast release form of methylphenidate at a low dose. CB tried the meds out over the weekend. We noticed that he was still completely himself but he was not as distracted as usual. He mentioned that his heart was racing the second evening he was on the meds, but did not comment on this feeling ever again. His teachers all commented about how much the meds helped him focus, feel less frustrated, and be in a better place to learn. His teachers reported that his learning remained pretty stagnant the 2nd 9 weeks of school and after he started the adhd meds, learning began to progress again and his behaviors improved immediately. Since he was on the fast release dosage, he took it in the morning and just before lunch. His teachers reported that they did not give him any demanding work just before lunch when they could tell his meds were wearing off. We wonder if he experienced the rebound effect during that time as he would seem more easily frustrated. Either way, it was easy for everyone to tell the ADHD meds were helping him focus, helped his regulatory behaviors (like saying the same word/phrase over and over, randomly blurting out inappropriate words, rocking), and helped him learn and progress.

February was a very positive month for everyone! In addition to CB being happier, I got the help I needed and was able to turn my outlook around. I also started attending a parenting class for parents with children with special needs. The class provided me with some new tools for dealing with difficult behavior and I felt empowered, like I could help my son again.

March 1, 2018 Allergy, Diet, & Supplements, Education 0 Read more >

A Pebble in a Waterfall

It feels like I am a pebble slowly flowing through a stream with small cascades. The stream gradually flows into a river with larger cascades causing the water to move faster and faster as well as the pebble. The river water gains momentum until it plummets over a crashing, powerful waterfall. The pebble is flowing along and has no awareness that the waterfall is coming. Once it falls, there is no stopping it. The water keeps pounding on the pebble. The pebble can kind of see other rocks and some pebbles around it so it is not alone; however, the pounding water does not stop. The pebble is trapped under the waterfall and cannot break free. It’s shape is changing and the pebble is powerless to change it.

I have felt like that pebble over the last few months slowly gaining momentum heading in a direction I cannot control. My shape changes just a little and I have moments of vulnerability I cannot hide. As of the last couple of weeks, the water around me has moved faster and my shape is changing more. As of a few days ago, I have plummeted over the waterfall. I don’t want to be at the bottom of the waterfall just trying to move. I want to be back up on the top in the nicely flowing river. I want to come up for air. I need help!

My personality is one where I try to keep most things inside and contained. For better or worse, that is what I do. I like to control my environment around me and it helps to keep me safe and I can keep my life together. Now that I am at the bottom of the waterfall, I can’t keep everything nice and contained. I can’t put up a facade that everything is ok, or if I do, I can only hold it together for a few hours. When there is a lull, I start crying. And sometimes, it is that big, ugly gasping for air crying.

My older son with special needs has started public kindergarten. He has a good, caring teacher. He has a shared TA that wants to help. He has an IEP (Individualized Education Plan). He has a principal that wants to help. However, he is struggling. He is struggling with all fine motor activities – cutting, writing, coloring, copying, buttoning buttons, tracing and with math – 1-1 correspondence, counting to 30, visually seeing the difference in 3, 4 or 5 items and with pre-reading – correlating sounds with the appropriate letters, blending, sounding out words, and sight words. He struggles to feel motivated, to try and to stay focused. He struggles to follow too many steps presented to him. He struggles to control his behavior and his words. He struggles with being over stimulated. We knew before he started that these would be challenges. We also knew that we would have to advocate for him. I guess some of the things we did not expect are 1) An inexperienced case manager who did not know she needed to track CB’s goals 2) A school/teacher that would send a Kindergartner with an IEP to the office 3 days in a row for inappropriate behavior 3) A principal/teacher that seem to be on the same page with you and then the very next day do something completely different. 4) A school not equipped to help CB with his behavior challenges and learning disabilities. Why is it so hard? I feel like a failure to my son. I feel like I don’t know how to support him with his needs. I don’t want him to already dislike school. I don’t want him to feel inferior to his peers. In some areas, he is barely progressing and I don’t know how to help and I don’t feel the school does either. We have a request for a Functional Behavior Assessment (FBA) in order to create a behavior intervention plan (BIP) at school, but it has not been started yet.

I have also felt like a failure in my outside activities related to CB’s genetic difference. I feel incapable of motivating the group which in turn makes it hard to move forward with our organization’s goal to raise funds for research to help CB and others like him.

I am contemplating using ADHD meds with our son for the first time ever. It is a difficult decision and one that we do not take lightly He has numerous sleep disturbances every night, as well, and we are currently trying melatonin to help it. In November and December, we tried supplements prescribed by CB’s neurologist which included prescription-strength omega 3s, gaba, methylated folate (Vitamin B12), magnesium (25 mg), Vitamin B6 (12.5mg), and zinc (5mg). Ultimately, we feel it made him more hyper and he was just as inattentive. We most likely will stick with melatonin a little longer and if that doesn’t help try a little Benadryl. He wakes up sneezing just about every morning so that could help for both the disturbances and the sneezing. We feel if he gets better sleep, then his attention and behavior will improve. If this does not help his sleep, then it looks like ADHD meds will be the way to go.

I want to feel like I am not being pounded. I want to feel like I am slowly moving through the water. I want to be able to come up for air! I cannot remain alone. I must ensure to put out all these thoughts and feelings into the universe, whether it be through blogging, talking with friends, talking with my husband, talking with other parents with children with special needs, and/or talking with a counselor. This is too much to carry alone and I don’t need to do it. I don’t need to worry about being a burden or about putting my issues on others. I don’t need to feel like I am a failure and a burden and keep it inside. Inside it grows and festers and keeps the water pounding and pounding non-stop on me. I need to make a promise to get outside more, blog more, to not carry the worry/guilt/feelings alone, to care for my husband and our relationship more and to spend time thinking about positive ways to help CB feel successful and happy!

January 29, 2018 Allergy, Diet, & Supplements, Education, Growth and Progress, Worries, Fears, & Ramblings 0 Read more >

Kindergarten – In full Swing

CB gets to walk to our local neighborhood public school every morning! He may not be super-excited about leaving the house each morning at 7:10am but once he gets outside, he is ready to move and explore. He loves being outside and the walk to school is perfect. Flowers and plants to explore, vehicles of all shapes and sizes driving by, and new friends to potentially walk-with – what more could he want? He jabbers the whole way to school talking about everything he sees and shares this not only with Olem and me but with anyone walking by. CB talks with everyone which makes him already well-known at school.  It’s also garnered him several play dates with a couple of friends from the neighborhood whom he encounters on the walks to school. Beaming mama face (on the other side of this computer)!

CB lucked out this year as his kinder class only has 16 students and he shares an aide with a couple of students in the class. Socially, he is about on par with his peers. Last year he attended the 5 year old program at a nearby university program. It was play-based and allowed him to grow in his confidence and with his social skills before starting kinder. Surprisingly, eating in the noisy cafeteria with his peers has not proved to be too much to handle. Providing tasks for when he finishes eating is helping to keep him from getting into too much mischief. His headphones have also not been needed, so far. Behavior challenges have surfaced, which is to be expected, but at a lower level than we anticipated. Academically, he struggles with fine motor, math, and coordinated movement skills and his pre-reading skills are coming along, just at a slower pace. Currently, he gets 45 minutes of speech at school weekly and limited OT. He also has other accommodations and modifications based off his IEP, Individualized Education Plan. (more…)

October 23, 2017 Allergy, Diet, & Supplements, Education, Highlights, Therapy 0 Read more >

Here and Now

I haven’t felt inspired lately to post anything so I was just thinking about what would help me in the future when I look back. One thing that is always helpful is to have an update on how CB is growing, changing, and learning. So, this is a post dedicated to CB here and now.

So far, this school year is going really well for CB. He had one tough week from Oct 12th-Oct 19th where he was physically acting out and physically responding to his friends and teachers. Then on Oct 20th, CB woke up and seemed different. He seemed calmer. From that point on, he has interacted appropriately with peers (excluding using inappropriate words with teachers and occasionally with peers). His peers seem to treat him appropriately and enjoy his company. He looks forward to going to school and from observations enjoys his time there. He is even enjoying journal time, which at this point is CB deciding what sentence to write, the teacher writing the sentence out with dotted letters, and CB tracing the letters with hand-over-hand assistance.

CB’s vocabulary and sentence structure are continuing to grow in depth and length. He can verbally express so much more. He still has difficulty saying some sounds like “l”, “w”, “f” and possibly “th”. His biggest issues are with sentence structure and motor planning to organize his thoughts. The therapists are working on asking questions and making sure he is using pronouns, articles, and correct verb structure. He still receives speech 4x a week, which really helps.

For PT, he seems physically stronger and can run longer distances than he was able to do just a couple of months ago and he can jump from higher distances. He still has problems with staying in motion while running. He normally stops after running a short distance. We are currently evaluating why this is happening (i.e., just tired, vision issues, motor-planning issues, etc.). He has an appt with a behavior optometrist in less than 2 weeks to evaluate whether the issue is vision-related (issues other than myopia or astigmatism, which are treated with his glasses).

For OT, he is slowly improving. He wore a weighted vest for the entire session today. His ability to trace letters seems to have improved. He will start a different handwriting without tears book soon in OT.

At home, we are still seeing tantrums and self-regulation issues resulting in either failed or successful attempts at hitting, kicking, spitting at, and verbally exploding at Olem, HB or me. Most can be easily mitigated but we had one on Wednesday that lasted for 20-30 minutes at home. Currently, we are exploring the technique where we remove him from the situation, briefly explain the situation, take him to a place to calm down, and ask him to let Olem or me know when he is calm enough to chat. When he says he is calm, we go back to that place where he was calming down and discuss the situation and appropriate next steps for him to be able to rejoin in the previous activity. So far, this is working pretty well. CB targets anyone around when he is upset so we leave him alone until he is calmer. This technique only works if we can remain calm during it.

On another note, he and HB play together so much and for the most part quite well. They go on so many adventures outside, build different flying contraptions and rolling vehicles out of legos, make up chasing games, and really enjoy playing with each other.

Updated blood work is just a few weeks away so I will have more results to evaluate. This lab work request also contains some stool and urine samples and additional blood work (compared to normal). This is due to a pediatric gastro we are considering and these are tests he requires his patients to get before seeing him.

CB loves most of his therapists and wishes he could see his proportionate share speech therapist every day.

 

 

October 28, 2016 Education, Growth and Progress, Therapy 0 Read more >

Educational Desires for CB

Olem and I are in the throes of figuring out whether we relocate for better schools, try out our local public school, consider one of the many charters in the area, or consider a private school for next year. I would love a crystal ball and to be able to foresee what future would be best for CB. Ideally, we want HB to attend the same school so he can be there to help out CB if he needs it and vice versa. With all the talk about how our state is failing kids with special needs and underprivileged kids, it makes it even harder to continue to invest in this state. We think about how nice it would be to live in a state that understands the impact and importance of investing in our children, including those with special needs and those with less means. Why are our representatives so short-sighted and only worried about the costs of today? I mean, how can a representative with special needs represent this population in such a negative way and really feel that limiting and in some cases removing supports within the school system and within the medical system, including cutting funding for children with special needs on medicaid, make any sense for the state? Additionally, we live in a school district where a huge chunk of our taxes are reallocated to schools outside our school district and our school district representatives are not committed to investing in children with special needs either. Where does this leave us?

Olem and I got in an argument last night over whether it really makes sense to stay in our city and our state. He argues that another state may better suite our son’s needs, our political views and our values. And possibly, we could get all of this and pay a lower cost of living. It would be a huge trade-off though. We have a good support system here – friends in town, family within a few hours, moms’ groups, good, healthy food, restaurants that cater to diet restrictions, easy access to medical resources, lots of therapy options, different schools and types of schools, good weather, like-minded people around us, good neighborhoods, the beach within a few hours, close access to camping and good hiking, good weather, low crime, lots of job opportunities, good town culture.

I think it is pretty easy to tell that I want to stay. I just can’t think of another place I would prefer to be. At the moment, I think we can get all we need in this area. As I started off saying, before my big train-of-thought detour, we are trying to decide whether we need to move to a different school district. If we move, we will be further away from everything, have to travel further to schools, and will have less access to a variety of schools. Well, at least all of this is true for the primary neighborhood/school district we are considering. We also will potentially be paying more for our home and have less finances to consider alternatives other than public school. I guess one big question is whether we feel public school, even one that provides the best special education resources in the area, is the best fit for CB, at least for the next couple of years.

What I like about the thought of a good public school with proper special education resources

  • CB will be included in a classroom with typically developing peers
  • His education will be provided for by our taxes
  • The team has training with how to handle behavior disruptions within the classroom
  • CB will get the same education as other typically developing peers
  • The school has to provide accommodations and differentiated learning
  • Having CB in the classroom will be beneficial to him and his peers
  • The material can be modified if CB needs it
  • My neighbors’ children will attend the same school
  • CB will attend public school like Olem and I did

What I don’t like about the thought of a good public school with proper special education resources

  • There will be standardized state-mandated testing and the anxiety/pressure that comes from it – The schools in our area put a lot of focus on it, unlike when I was a child
    • Although having a child with special needs means my child can take a different version or potentially opt out
  • There will be regular homework in elementary school
    • Although I may be able to get it reduced
  • The differentiated learning and accommodations have to fit within the school’s framework – There isn’t typically too much differentiation they can do.
    • A good, well-trained, knowledgable school should be able to more flexible than others.
  • The school may push to put CB in a contained classroom for part/all of the time over the years
    • As the parent, I have the right to push-back. The burden of proof that the contained classroom would be the least-restrictive environment would be on them.
  • CB will get frustrated often due to the inflexible schedule/difficulty of the work/typical expectations if the teacher/assistants are not well-trained, motivated, flexible, creative and understanding
    • A good school should be able to provide these kinds of teachers.

So the continual weight of it all will continue. I am a person that likes to plan and not-knowing right now is quite frustrating and a bit overwhelming.

September 18, 2016 Education, , 0 Read more >

Nutrition Update – Low Iron

Feeling a bit bummed today…CB’s nutrition report came back with low iron, high UBC, low cacl % iron saturation, low IgA, slightly low zinc, high vitamin E, low WBC, and improved vitamin D3. I believe the persistently high vitamin E levels are due to CB’s high almond intake so this is understandable. His IgA level is 6 points lower than it was 2 months ago but the second test was taken in the morning while fasting so that might account for some of the difference. The zinc is the exact same value as 2 months ago and the vitamin D increased some. The vitamin D increase is easily explained by the additional time in the sun plus vitamin D supplements for the first month or so after the last test. However, the vitamin D3 level is not as high as we would like it to be. CB stopped having dairy in his diet one month before the last test. There is definitely the potential that adding dairy back in caused the decline in iron. Even though the dairy was in his diet before the last test, maybe it took more time to really impact his intestines and then his iron levels. From this we know only adding vitamin D3 supplement does not bring up the iron and zinc levels. We also know that although the probiotics are helping, they are not enough.

We feel at this point, we are going to take a step back and look through his previous nutrition reports to find when his levels where the best. It seems like October of last year, his vitamin levels were quite solid with the exception of low IgA (although it was improving) and high vitamin E (still high almond intake). For now, our plan is to get back on the following supplementation routine. CB will also remain GFCFSF plus we limit dyes, no HFCS, any preservatives with initials for names, no carageenan, and no MSG. (more…)

July 7, 2016 Allergy, Diet, & Supplements, Education, Tests & Evaluations, , , , , 0 Read more >

Awww…to breathe and function again

My entire family has been out of pocket off and on for the past 2 weeks. Ughh…everything from the flu to sinus infections. CB, HB, and I are on the mend. Olem is still battling the sinus infection but his doctor has sufficiently drugged him up so he has hope he will feel normal again soon. This seems like so late in the year to get the flu, but I guess the flu had other ideas. I was told it was some mutant, super-strong strand that invaded and that even if we had received the flu shot, it wouldn’t have mattered. The plan for the future is to still stick to my guns and not get the flu shot in upcoming years. 3 cancelled trips later and we back into our usual routine.

In other news, Olem’s crazy behavior regression back in January/February has for sure flown the coop. It has not surfaced and we hope it doesn’t rear its head again, or at least goes into hiding for a very long time. On the flip side, it seems like CB’s language skills have improved tremendously. I just read through my last blog and I will say that some fog has slipped back in. He isn’t in the regression phase, but he also isn’t in the mostly-fog free phase he went through a couple of weeks ago. He seems more like his usual self with his usual challenges, like today, he didn’t want to change activities and told me how much he didn’t like me each time a change was requested. For example, I walked into the door at his school and he told me he wanted to play more. I asked for a hug and he told me he didn’t like me and went to sit by the door and throw a fit. He followed a similar patter when we got to his speech therapist’s office and when I asked him to find his water bottle for dinner, which was located in his backpack he brought in from the car.

From the pre-k front, his head teacher and I have set a goal for CB to be able to write his name before he leaves school, which will be the end of May. The goal is for the first letter to be in caps and the others to be in lowercase. We will see how this goes :). Being that CB really dislikes writing and doesn’t put much focus into it, this may be a stretch goal. Oh, and I found out that his head teacher also worked at the university lab school CB will attend next year. She had nothing but positive things to say about the school. I love CB’s head teacher! Too bad, the school isn’t way closer.

 

March 31, 2016 Education, Growth and Progress 0 Read more >

Kindergarten School Selection

After much deliberation, we decided on CB’s school of choice for Kindergarten for next year. We ended up selecting a school that is located and run through our local university. The school does not meet the criteria I specified in my post The Perfect School, but that school doesn’t exist (that I know of ;)).

The school is run by a master teacher with her master’s or PhD in child development or a related field, an assistant teacher with her degree in child development or a related field, and several undergraduate students. There will be a max of 19 students in the class. The school is designed to meet the child at their level. I hope this will be less stressful for CB. The school only runs from Monday-Thursday so that allows more time for therapy. They also focus on positive behavior and social interaction like CB’s current pre-k. The school comes highly rated by close friends.

The downside is that we will have to pay for his school for his Kindergarten year but the plus side is that we both feel very comforted by the decision. Too bad the school only offers options through Kindergarten.

March 3, 2016 Education 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 >