Dyspraxic Journey

Worries, Fears, & Ramblings

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 >

Losing a Loved One

This evening’s blog is a bit off topic as it is not about CB but rather about my dealings with the loss of my grammy.  My grammy passed away last week and I realized I am still heavily mourning her loss of life. Just about anytime someone asks me about her, tears roll down my cheeks. Or someone can talk about something else sad to them and those same tears form and roll steadily down my face. As much as I would love to be that person that is the most empathetic person you know, that is not normally me. I try, I do, but generally tears do not flow that easily with me. Don’t get me wrong, when my hormones are fluctuating during those specific times of the month, I can cry over anything. (I am still waiting for my hormones to normalize a bit more. HB stopped nursing earlier this year and my hormones are still trying to figure out how to act appropriately.)

My grammy and granddaddy were my closest neighbors growing up and were a huge part of my childhood. My grandaddy passed away 8 years ago. My grammy lived on and remained in her home. She has been on hospice for the past 3 years (and the Dr told my mom she wouldn’t last one month after they put her on hospice) so I have had time to prepare for her passing. Just under a week prior to her death, a health situation occurred that caused her to go downhill quickly and I got the chance to see her and tell her goodbye before she lost recognition of those around her. I got the chance to have “closure”. Even with that “closure”, I am still mourning our lost connection, her symbolic role in the family, the heartache my mom and aunts are enduring, and the loss of one more of my dear grandparents.  (more…)

September 22, 2016 Worries, Fears, & Ramblings 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 >

Impulsivity and Reflected Emotions

I’m trying to figure out how to even start. This last week and a half have been quite hard. Poor CB has been sick with a fever that lasted for 4 days, plus a cough, runny nose, sneezing, and increased impulsivity. The impulsivity started before the fever and it has grown to such a degree that we opted to remove cow’s milk from CB’s diet again. The decision also took into account reviewing his latest blood work and past stool test to determine that his gut does not seem to be performing at optimal levels due to the high fecal fat content and the lower vitamin levels of zinc, D3, and iron saturation. Goat’s milk is still currently in his diet and he is eating goat’s milk kefir in the mornings to help combat the antibiotics he is taking. He still also gets his probiotic at night. Since he has been prone to yeast infections in the past when he takes antibiotics, I try to ensure to restore with good bacteria. Olem and I still feel that diet can make a big difference and are just trying to see if there is an optimal diet that suits CB best. There are always so many factors to consider that it is typically not one thing that we can pin such behavior changes on. Additionally, some of CB’s therapies and his preschool are coming to an end. He could be feeding off my and/or his teachers’ energies. He can be very sensitive to others feelings and we see his behaviors reflecting/modeling back others emotions. We talk with CB about some of his therapies and preschool ending but CB doesn’t say much or respond much to these comments. Who knows if this is affecting him more than he can show us.  (more…)

May 26, 2016 Allergy, Diet, & Supplements, Worries, Fears, & Ramblings, , , , , 0 Read more >

Desperately in Need of a Breather

Sometimes, it is all so overwhelming…the therapies, the driving all over town, the strict schedule, the constant attention on what your child is not achieving or should be working on, determining if the therapies are helping or possibly hurting your child’s progress, and watching your child struggle at most everything he/she does. Also, there is the constant worry “Is it all too much or do you need to incorporate more?” Today was one of those days where wham..I was just whacked in the face with the weight of it all. One factor is probably that it is the end of year where everyone seems like they are so ready for the school year to be over. Some of the teachers’ attitudes seem to be on the less positive side, somewhat distracted, and some flat out do not seem like they want to be involved in my child’s life right now. Maybe I am just in the same boat as those teachers and I just want out. I want a change. The end of CB’s current school year is less than a month away as well as our drive to another town 30 minutes away, 4x a week. He will also stop his PT as she is located in the nearby town, as well.

I also just feel like I don’t want to hear another therapist or teacher telling me what CB is not able to do that he should be able to or what we should be working on to help him speak better, throw correctly, walk up/down stairs appropriately, act more appropriately, …I am just so tired. Tired of thinking minutely about every little thing my son says, eats, and everything he does. He has come so far and he continues to grow and progress, but sometimes I just want to not have to worry and overthink everything we are doing and he is doing. I want to not have to go to therapy for everything and for him to just once to be able to acquire a skill easily and for CB’s little brother to not understand what we are requesting before CB does. I understand everyone has their challenges. Regardless of how it may seem, everyone has struggles and difficult times in their life.

Another factor is also that this summer, we will take about 3.5 weeks off – no therapies, no school, no sports activities. Yay! We will visit family and then stay in another home in another state for 2 weeks. I think I really need this to recharge and start everything up again feeling refreshed and ready to take it all on again.

May 4, 2016 Therapy, Worries, Fears, & Ramblings, , 0 Read more >

Why saying CB has Global Dyspraxia helps Me

CB does not have an official diagnosis of global dyspraxia or DCD (Developmental Coordination Disorder). He actually doesn’t have any official diagnosis other than the loose term of speech motor disorder. For one reason, it is hard to get a diagnosis of DCD prior to the age of 5 and some doctors won’t even diagnose till around 7. CB will be 5 next month. Another reason for the lack of diagnosis is that only certain doctors will prescribe a dyspraxia/DCD diagnosis. Many doctors here in the US are not familiar with the diagnosis. The 3rd reason deals with what getting a diagnosis would actually do for the child or family. Here in the US, neither DCD nor dyspraxia are recognized by school systems as disorders so it can still be a challenge to get services even with the diagnosis. On a side note, if you have a dyspraxia/DCD diagnosis for your child, your child should qualify under the OHI (Other Health Impairment) section for special education services. Besides for services at school, it could be beneficial to have the diagnosis for insurance purposes. Insurance is so far covering the therapies CB needs (minus the high deductible and co-insurance…fun) so that is not an issue. For school, we are working around the lack of a dyspraxia diagnosis by getting a ADD/ADHD diagnosis so he would qualify under OHI.  We are also getting an OT eval performed for CB. I feel that at the moment, CB will get the same evaluations and therefore access to the same services he would get if he had the dyspraxia/DCD diagnosis by taking this other route. It would be great if getting a dyspraxia/DCD diagnosis would automatically entitle children to certain special ed services like children with an autistic diagnosis get.

Now, for me, stating that CB has global dyspraxia helps me to have a 2 word description to describe CB’s special needs. I don’t have to go into all the detail about all the different needs he has i.e., speech, fine motor, attention, motor planning, visual tracking, sensory, etc. The term global dyspraxia serves as a great umbrella term that encompasses these conditions. To some parents with autistic children, I state that CB is just off the spectrum. There are a lot of overlapping traits for dyspraxic children and autistic children. When CB was 3, we even took him to a neurologist to confirm he is not autistic.  The neurologist stated that he did not believe CB was autistic but that he possessed enough symptoms that he could diagnose him as autistic if we needed it for insurance purposes. We opted not to get the diagnosis but to keep the option open if we needed it. Many of the kids that CB really connects with are autistic children and in many situations, the parents of autistic children have assumed CB is autistic. As CB has grown, several of his autistic-like symptoms have faded. I know for sure at this point in CB’s life that he is not autistic but dyspraxic. I am not big into labels but this is one label that has really helped me understand my child even better, my son’s teachers understand him better, me describe my son to others so they better understand him, and give me a more focused approach to finding and choosing appropriate therapies and education. Having this label, global dyspraxia, helps make his future seem less scary to me.

December 17, 2015 Worries, Fears, & Ramblings 0 Read more >

Personal Navigator

So for us, we have had help along the way. Not like there has been a person that has helped guide everything we do, but there have been people providing tidbits of help along the way. You know what, I would absolutely LOVE to have a person who guides us through all the steps from identification of special needs to therapy suggestions to diet suggestions to test suggestions to specialist suggestions to best help for working with schools to the questions to ask at each phase to when to not worry and just be. The best name I can come up with for this role is a Personal Navigator. If this person exists, please private message me :).

I think one of the biggest issues is knowing what questions to ask and how to ask them. I wish there was a place to go to get most of the answers and a place to go to help calm your nerves and to help you not to worry. Why does this journey have to feel so unique, complicated, and sometimes lonely? I want others to not have to feel this. I dream that personal navigators will be more common and that these people, whatever their credentials are, will be easily accessible to parents with children with special needs regardless of financial means, physical location, or physical need.

 

December 3, 2015 Worries, Fears, & Ramblings, , , 0 Read more >

Trusting My Gut

The theme for this week for CB is confidence and trusting himself. There have been several situations where he responded to the posed questions with confidence and with the correct answers. However, when another child joined in and started responding, CB would wait to respond till the other child responded. CB would then second guess his answers and much of the time respond with the other child’s answers, even if the answer was wrong. Olem and I have talked in detail about how much we want to help him gain confidence and to be able to trust that he can accomplish whatever is set forth. Yes, it may take a longer time for CB and it may take more work, but he can do it! I want him to stop second guessing himself.

This got me thinking about how I talk about this topic like it is such an easy thing to do – trust yourself, trust your gut. This is something I have struggled with and continue to struggle with. On certain topics, I can come across as quite assertive and maybe even arrogant. I am argumentative by nature and have to work on toning my assertiveness down. On some topics though, I feel I struggle to get my head around all the options and which one seems to be the best one. I have told myself over and over not to second guess myself so much in those scenarios, but I feel that my ability to really make the best decision was limited.  I just didn’t feel like I was able to really see the bigger picture. I would get lost in all the minutia of the data presented and couldn’t really step back, take in all the data, and make that really high level decision. Now, I am mainly looking back at a very specific time in my life, but I feel I learned a lot about myself during those trials and somewhat tough times. So how does this really relate to CB and his confidence struggles?

I wonder if that is how CB feels but on a daily basis. Maybe he can only process so many variables and on a regular basis, there are just too many variables presented. So he either shuts down, focuses on some other distraction, or choose the only option he can process, which in the scenario I presented above may be to choose the other person’s answer.  Who knows if by focusing on the other person’s answer whether he has even forgotten what the original question was and therefore really doesn’t know the answer. CB does need things broken down step by step. He can follow multi-step requests but only certain ones. Many times, we have to speak slowly and repeat them. If the issue is that he is having to process too much, then the obvious answer is to provide an environment with the least distractions and to not test CB’s capabilities in this type of fashion. It is educational and beneficial to interact in the group setting and I think he can still learn in those scenarios; however, it may not be fair to access his knowledge acquisition in that same setting. So, in some scenarios, maybe it is not an issue of trusting his gut. Maybe, he is losing sight of what his gut is telling him before his gut has a chance to speak. And for many others, there is the issue of CB learning how to listen to his gut and to trust it. We will continue to provide more options for CB to be independent and feel success in his capabilities. And we will continue to try to understand where CB is coming from and to try to meet him at his level and to find new and different ways to help CB learn and grow.

October 22, 2015 Worries, Fears, & Ramblings 0 Read more >

The kiddos started school and I am the one having the hard time, is it just me?

I was really looking forward to CB’s pre-k and HB’s mother’s day out program starting up so the kiddos would get back into their new routine. The summer chaos had settled in and there was no question that a routine would be great for all of us. CB had a lot of therapy changes and some additions so I was anticipating how it would all go. All of the new changes seemed like wonderful enhancements to CB’ learning and development. And you know what, the new routine and programs have been fantastic for CB. He is progressing well and has been playing with HB better than ever. So, the big question is, why is this tough for me? All this positivity should be beaming directly into my being and helping me to shine, as well. Unfortunately, this has not been the case.

Part of the matter boils down to me not taking better care of myself and another part is what to do with some added no kid time? I haven’t put any focus on either of these. I therefore have not eaten great in between shuffling the kiddos everywhere and have filled my free time w/frivolous things. I just finding myself not wanting to do anything when I have a free moment. You always hear about classes, articles, presentations, and on and on about how parents and especially parents with children with special needs need to make sure to take care of themselves and to make it a priority. Honestly, when you are in the thick of it and are feeling weighed down. The thought of taking care of yourself and making it a priority just sounds like work and more stress.

The realization that more needs to be done to take care of myself should help motivate me to get back on at least a somewhat regular exercise schedule and to make lunch meal prep for me, as well, a necessity. I think I just need to fill my cup up a bit more so I will have more to offer. It is probably not a bad idea to start periodically thinking about how I will want to fill my time next year when CB is in kinder and HB is in a mother’s day out program 3 days a week. That has also seemed stressful, but I think it is mostly related to perspective. I just need a new plan :).

CORRECTION STATED BELOW – So, we got further confirmation that CB in fact does have a peanut allergy. The IGE allergy testing he had done a few months back indicated he could have a peanut allergy as the numbers were slightly elevated. We have stayed mostly away from peanuts since the test. Well, last weekend, while out of town at the beach, CB ate a bunless burger with fries, pickles, some raw onions, and some bites of tomato. We knew the burger and fries were cooked in peanut oil, which seemed weird but we thought we would try it. Partway through the meal, I noticed CB’s cheeks were bright red and he had what looked like a big pimple forming on his chin just below his mouth. His lips also looked like they might be a little swollen. Since he had been at the beach, I wasn’t 100% sure if the cheeks were turning red b/c of the food or the sun. I really thought the redness was more apparent and didn’t remember the blemish. We set the food aside and gave him some food we had packed as back-up. We thought this could be related to the vinegar in the pickles b/c he is sometimes getting swollen lips from those, from the peanut oil, or from some other ingredient we didn’t even know about. Two nights ago, during dinner, CB had some thai spring rolls in peanut sauce. He got that same enlarged pimple/blemish. Guess we will keep that off the food list for now.

Diet/Nutrition Update: CB also started GSE (grape seed extract) a few days ago to help treat the yeast in his belly and a new probiotic w/30 billion active cultures (Ultimate Flora Extra Care Probiotic Supplement). We are also periodically giving him some dairy with no noticeable changes.

9/23/2015 UPDATE/CORRECTION: Yah, CB’s allergic reactions appeared to be peanut related, but they were reactions to the already known allergy, soy. The peanut sauce for the spring rolls had soy sauce in it. I can’t believe we weren’t thinking about that when we got it. The restaurant that said they cooked their burgers and fries in peanut oil were incorrect. I called them back and they double-checked the oil. It was vegetable oil with soybeans in it. It is so hard to really know what you are eating when you eat out. The cooks didn’t even know what they were using and then just guessed and guessed wrong.  I was so concerned we were going to have to start carrying around an epi pen and start having to worry about peanut exposure, as well, whew. It is nice to have one less thing to worry about for now.

September 15, 2015 Allergy, Diet, & Supplements, Worries, Fears, & Ramblings, , , , 0 Read more >

Home Again Home Again Jiggity Jig

We are home at last!! Our travels began back in early July, when Olem and I had the opportunity to attend the Childhood Apraxia of Speech conference in San Antonio. I can’t even express how comforting and wonderful it was to meet many other parents with children facing similar challenges as CB. I feel I learned so much just from the parents and the experiences they shared. We also had numerous take-aways from the conference speakers. I have a therapy journal started for each of CB’s therapy providers and preschool teachers to post their session and class notes within daily. I think this will help keep all the therapists on the same page and help Olem and I to better target our at-home practice. No clue why I didn’t start one sooner. One of the speakers also provided a large list of speech apps to incorporate at home. She also demonstrated several of those apps during the session and provided tips about how to specifically utilize those apps. I am still working through the apps to determine which ones will work best, but I feel I have a much more solid starting place to work from. I have been quite reluctant to allow Olem to play with my phone or our iPad much, but I think if I provide the right apps at the right time, it can be quite beneficial for him. We also decided to increase CB’s private ST sessions to 4x a week. Even though it will be with 2 different STs, I think this will be the perfect amt for him right now.

One of the biggest benefits of the conference was that it simply lit the fire under our tail ends to motivate us to take definitive action on some of the things we have been teeter tottering on. I think the conference gave me the tools and confidence to make the decisions without having so much uncertainty and/or indecision behind the choices. I made a checklist of actionable items from the conference and have been checking them off over the last 1.5 months. There are still more to go, but I feel confident I will get them done. This reminds me though that I need to go back and look at the provided USB again to reflect and internalize a few more of the ideas/discussions presented.

As soon as the conference ended, the kiddos, the grandparents , Olem and I headed up north to their house for a few days. We then continued traveling up to Michigan for a home swap, and later to Ireland for 5 days, back to the g-parents home for a little while and returned around August 16th. The kiddos were with us roadtripping for everything except for the conference and Ireland trip. They handled the travel quite well, although towards the end, I think it was getting a bit hard for CB. It was harder to get him regulated and he was more impulsive during the last week. The trip was unforgettable though and CB surprisingly did not regress verbally or physically. This is our second home swap and both trips were huge refreshers. On one hand, we have such a great time experiencing the new place and on the other, we appreciate being back home, as well. We definitely plan to do this again next summer, and are even considering a European home swap. I think next year, we will limit the travel to 1 month. With Olem’s ability to work from anywhere since he works from home, this makes it possible to go on a big family trip without the typical expense and with limited vacation time needed for Olem.

 

August 20, 2015 Worries, Fears, & Ramblings 0 Read more >