Dyspraxic Journey

Growth and Progress

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 >

Mooo…yep, we are going to introduce you!

So, dairy has not been a regular part of CB’s diet for 2.5 years. We have tried introducing it back into his diet a couple of times but for various reasons have removed dairy each time after a few weeks or a month or so. This time Olem and I decided to add it back into his diet because 1) his latest 2 lab results look good, 2) his behavior has been more manageable for a couple of months, 3) his allergies are not bothering him currently, and 4) we do not want the food group entirely eliminated if it doesn’t need to be.

We started with whole cow’s milk yogurt today and will try it for several days, remove it for a few days, and monitor results. Fingers crossed his body accepts the change and we don’t see negative side effects.

This is sort of crazy, but CB is still in the same phase he was in from my last post in early May. What?? He has remained in a more positive place and has been more flexible with correcting his use of negative words during vocal outbursts/stems and modifying his inappropriate behavior with friends and younger brother. Maybe summer break suits him :).

CB watched his 3rd movie at the theater this past weekend, Cars3. We went to a sensory-friendly showing so kid attendance was high. CB stayed the whole time inside the theater and in his seat . He started wearing his headphones after the previews (which were slightly quieter). CB did ask to leave 2 times but his heart was not in his request. He didn’t insist on it. His teddy and headphones made him feel safe.

June 29, 2017 Allergy, Diet, & Supplements, Growth and Progress 0 Read more >

A Welcome Phase

The last couple of weeks have been calmer than usual. Why? Well, I am not completely sure but I am definitely enjoying it. (I can’t help but wonder in the back of my mind when will this all change? Until then…) CB has been more loving, agreeable, and seems a bit more “put together” than his usual self. The last few days, when I ask him to do something, he replies more times than not with “okay”, a really cute, quick, and subtle “o’kaaay”. He also chooses to sit in my lap when I read his chosen book(s) during bedtime and has even cuddled up close to me 2x when he comes to our bed during the middle of the night. He usually just keeps a leg on me or allows my arm to rest on him for about 20 seconds. His body seems a bit more regulated.

I can’t pinpoint if this welcome change is related to other changes in our lives or whether it is just coincidental. Some of the changes over the last few months have been CB, HB, and I swimming together on a weekly basis, CB upping his OT from 1x to 2x a week, his teachers providing yellow highlighted work to trace instead of needing to have hand-over-hand assistance each time he wrote, camping and more family around the last few weeks, and more regular play dates w/friends. Maybe developmentally, this is just a new phase he is in. This week, CB wrote his name completely by himself (not perfect, but 100% independent without a model, verbal direction, or tracing)! He was so proud of himself with his loud call of “Mommy, look what I did!” and his beautiful smile beaming across his face. He also started riding a bike with training wheels within the last 3 weeks. Weekly, he has initiated getting on the bike for a short ride down the street.

We still have meltdowns over small things but usually just 1-2 a day and are manageable. Redirection has been easier.

CB’s last day of school was yesterday. He has formed bonds with several of his classmates and I love how he is just one of the gang.

I hope this long summer break will be a time for CB to grow, play, develop/dabble with new skills to help make life easier for him, enjoy life, and make lasting memories!

May 6, 2017 Growth and Progress, 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 >

Will we be moving?

The latest news with our family is that we are highly considering moving further out of town. I recently have reached out to more parents with children with special needs that live in my neighborhood to get their thoughts about our local elementary. Don’t get me wrong, it is a great school and one of the best in the entire area; however, I have received very mixed results from the parents of children with special needs. This is disheartening. I have talked with other parents with children with special needs that live in a smaller school district nearby who rave about their school system. This would also give us the chance to own more land, get more space, and live closer to the water. There is also a community space we can join with a pool, park and lake access. That could be a great option for meeting neighbors. We would live less in the middle of everything which has its benefits and drawbacks.

Our 3 week road trip ended last week. Lots of positive memories, genuine family visits, and the chance to get away from the heat. The kids traveled well, but man, I was exhausted when things were said and done. For all the positives, there was 2 solid days on the road, tension due to the stress of traveling, and the fact that these road trips really get us out of our element and get us thinking about our lives. Things surface that you may not be expecting. When we got back, I told myself that we need to find a different option for next year. However, just over a week later, I may have to already change my mind :). For all the tension, it may be a good thing for that tension to surface. Maybe with 3 summer road trips with the kids, we will be more prepared and aware of what comes from these trips. Plus, Olem was already in a questionable place so traveling with kiddos may not be the most relaxing and stress-free thing to be doing. The last 2 road trips have required us to rush back as there were other trips that got added to the end of the summer road trip. For this year, Olem had to fly out for work the day after he got back. (more…)

August 18, 2016 Growth and Progress, Therapy, Worries, Fears, & Ramblings, , 0 Read more >

Summer Vacation

We are away on our regular summer vacation!! Unlike the past where we would home swap, this summer we ended up having to secure a home through airbnb.com. We just couldn’t get anyone to want to trade homes during the dead heat of summer, surprise, surprise :). Sort of surprised we had luck for the past 2 summers. Like usual, the kiddos were great road trippers! We made our way north which took about a week with stopovers with various family members. All of our family visits were short but sweet. CB has always loved riding in his car seat, even as a baby. I think HB has simply followed suit as he has seen how his brother behaves on car rides.

We could not have planned a more jam-packed summer if we tried. I can’t say I would have given up any trip or experience, but I do wish there had a been a bit more relaxation time built into the schedule. I think some of CB’s behavior tidbits this summer were directly connected with our travels. Overall, the summer break has been good for him. He has more chunks of time set aside for play, mostly with HB, which I think is good for him. We have followed the new supplement schedule with just a few exceptions due to traveling and I think the supplements seem like a good fit. We are sticking to the GFCFSF diet. Thank goodness for all the modified diet options we have today. We attended a conference a couple of weeks ago where we connected with other families and learned more about CB’s genetic difference. I think the main things we learned is that an MRI could be helpful, an updated hearing test, signs to look out for for anxiety, an awareness that developing seizures later in life is possible (not sure though if it is really related to his gene or others on the long arm of Chromosome 18) and a few more things to investigate.

I am toying with the idea of piano lessons but then I also want to ensure that he has sufficient off-time/playtime. This is the second time he has said yes. We will see. I guess the next thing I need to figure out is his schedule and to ensure not to pack in too much into it. How do you do that with so many needed therapies? I guess that is the challenge we have as parents with children with special needs. I know that playtime is super important at his age, and his school gets that. I hope this year if things get to hectic, I will be aware enough to back off a bit and see if things balance back out. I also should see if there is an insurance-covered OATS-like test to test his levels to see if the supplements and anti-fungal cleanse helped.

 

July 25, 2016 Genetics, Growth and Progress, , , 0 Read more >

Summer is Now in Full Swing

I can’t believe it has been a whole month since I last wrote a post. With school ending, camp starting, and trips to two states and another country, it has been a bit of a whirlwind. It is hard to determine where to start.

Well, for the latest nutritional update, CB had blood taken today so we will know in a week or so whether his vitamin levels are back to normal. I believe I mentioned we ultimately decided to completely cut out dairy again. It just really seemed like the factor contributing to the declining levels. We will see soon. Otherwise, for the last month, CB regularly gets probiotics at night, but that has been the only supplement. We will most likely add the enzymes back in to help with his regular smelly gas after he eats. We were waiting to make any additions/changes till after we receive the blood work results. We quite giving him the vitamin D drops b/c he is getting so much sun everyday. We will also need to think about adding the multivitamin back in. I am really curious to see how his Vitamin E levels and to see if his fat absorption has improved.

I have now met another family with the same genetic mutation as my son. It was so affirming and feels really good to know you are not alone. Although our children are different, it is easy to tell how the genetic difference greatly impacts both our children’s lives. Still not much is know about SETBP1 loss-of-function mutations so we still have to address each symptom, i.e., speech therapy for the motor-planning disorder, OT for the fine motor challenges, PT for core strength, balance, and coordination, diet for sensory needs, etc. It would be nice to be able to help the root cause, but who knows if/when during CB’s life this level of information will even be known. I am reaching out to as my knowledgeable professionals and researchers as possible to find out what we can. (more…)

June 29, 2016 Allergy, Diet, & Supplements, Genetics, Growth and Progress, , , , , 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 >

A Positive Shift in CB’s Body

Starting a week ago, CB went through a shift and seems more comfortable in his body and to have grown in a few areas. This may be the growth that is typically witnessed after long regression periods. I already blogged about some of the regression we were seeing with CB in January and February – http://www.dyspraxicjourney.com/regression-hitting-kicking-spitting-and-perseverating/. We saw small bits of improvement in late February and then starting last Wednesday night, it was as if a barrier within CB’s brain was removed or moved out of the way. It all started during a walk with me after dinner last Wednesday. We were walking along and he seemed more present, conversational and observant. During the walk, CB saw 3 girls playing in a neighbor’s lawn with their mom’s gathered in a semi-circle behind them chatting and sipping wine. CB showed interest in the girls playing and the older one who was 9 asked him to join them. He played beautifully with the girls, including 1 his own age, which involved kicking balls around, chase, and just typical kid play. He even played in his rubber rain boots. We stayed there for 30-45 minutes. The next day continued in the same fashion where he received 2 bonus stars at school and had a great OT session. On Friday, his ST mentioned that they played 2 games and CB was actively involved the whole time. Usually about 2/3 the way, CB would grow disinterested and distracted. He also focused very well and was attentive during his horse therapy. While playing at the park, he ran further than he ever has. If he over-reacted with his brother, he could recognize the behavior, apologize, and move on. The following days have continued in a similar pattern.  (more…)

March 10, 2016 Growth and Progress, , 0 Read more >

Regression – Hitting, Kicking, Spitting, and Perseverating

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

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

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