Dyspraxic Journey

Tag Archive: behavior

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 >

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 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 >

Behavior – When to Worry and When to Investigate Further

I think having a child with special needs makes me, at least, hyper-aware of behavior changes. I am guessing this is the same for other parents of children with special needs. This hyper-awareness identifies a change; however, it does not necessarily result in an understanding of the change. It probably makes us more paranoid and triggers the ‘how do I fix this’ response. It is hard to know when the change is just a typical phase that will correct itself on its own or the result of some bodily issue like a bacterial infection, head pressure, or stomach problems or a social problem at school or home or some other external or identifiable internal source.You don’t want to over-react and spend too much of your time worrying about and researching something that is really just a phase. However, you don’t want to just let it go if there is something you can do to help your child change the behavior.

For CB, lately, he has really been expressing most things with strong emotion. For example, a question like “what would you like for snack?” could trigger “I WANT A BANANA.” with him yelling and sounding harsh or it could even trigger “Your are NOT NICE.” If we ask him to reply again, he will say his response calmly and many times more polite. Other things are triggering full on tantrums like “It’s time to go to bed.” or “Let’s change clothes.” My gut tells me there is something going on gut-wise. We have performed so many tests and it kinda bites to have to follow-up some of those with more tests but that is probably what we will need to do.

I think first steps are to move forward with the enzymes we purchased about a month ago and see if that helps with his high fecal fat content, tooting, and maybe even behavior.

April 12, 2016 Allergy, Diet, & Supplements, , 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 >

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 >