Tag Archives: tired momma bear

Hello there:)

blog-were-back

 

Hello my friends:)  No we didn’t fall off the face of the earth and we are still in full swing of the Brain Balance program.  Continuing to make strides and progress.  May has just been a month that has taken us and me personally through more than I had planned and it took my away from my blogging.  So I am super excited to be able to start it up again and here we go!!!

Two major changes for our Dalton within the last 2 weeks.  His medication has been decreased by 10mg.  Which is HUGE!!  We felt that the weight loss coupled with the changes/progress that he had been displaying warranted reaching out to his pediatrician to discuss this option.  The pediatrician did agree to decrease his dosage and he has already shown positive improvement from this change.  This has also made me question whether or not we should being looking for a new pediatrician for him though…with an outlook from one of the doctors in the practice of “there is nothing that Brain Balance is going to do to effect his medicine or help him”…I’m not so sure that he is a good fit for our team any longer.  I will wait to speak with his regular pediatrician before making that final determination.  They have been in our lives for 19 years…will be hard to let go and move on because they have been fantastic doctors…we don’t have to agree on everything and we already disagree about some things.  And that is OK:)  But if there is going to be more problems on the horizon and too much resistance and not enough open mindedness…you gotta do what you gotta do for your kids.

The other major milestone is that Dalton made it through the night in regular underwear and NO ACCIDENTS!!!  First….Time….EVER!!!!  I almost did backflips down the hallway when I saw his smiling face this morning 🙂  Super proud of you buddy!!  You are our rockstar!!!!

Tonight we have his 3 month evaluation.  Excited to see what his measurable progress is and see how far he has come since the program beginning!!  Stay tuned!!

 

 

“I just want to read my books…”

 

Good morning folks!  So…I mentioned in my blog yesterday that Dalton always seems to show more real progress in the mornings after he is well rested and before his meds.  Well this morning was another stellar example of this!!

When going in to wake Dalton for school this morning…he was already awake.  But he wasn’t JUST awake…he was awake, laying in his bed reading his books.  When asked what he was doing he said, “I woke up and I just want to read my books.”  These words have NEVER come out of Dalton’s mouth.  N.E.V.E.R.  Did I mention NEVER?!?!?  Not in 9 years…NEVER!!!!  He then hurriedly got ready for school and put his shoes and socks on correctly the first time in less than 30 seconds (the shoes and socks took less than 30 seconds…not the whole process…LOL).  His motivation was getting back to his books before his transport arrived to take him to school.  Now…reading has always been a struggle for him.  Mostly because he lacks the attention and focus to keep his eyes on the proper line in the books and if he looks away from the book even for a split second he is completely lost…these are skills that we are working on in the Brain Balance program.  His exercises at home and at center are working his eye tracking abilities and are helping tremendously!  We also noticed that Dalton is able to read his school lunch menu.  He showed us this ability just 2 days ago when we were looking at lunch choices for the week and he read what the main entree choices were for each day.  We had no idea that he was actually able to read at the advanced level that he was performing at!  Not because we are inattentive parents…but because Dalton has been unable to show us what he is capable of.

Consider this…a child that lives locked inside his body.  He can’t command his body consciously or unconsciously to perform and behave in the way that he wants.  He lives unaware of his space and existence in our neurotypical dimension.  He doesn’t feel his body the way that others do.  He can’t track very well with his eyes (huge deficiencies in 3D vision) and therefore is nonathletic, clumsy and is constantly tripping over and walking into/over items in his path (and an occasional doorway).  His eyes can’t track and focus on single images/words for long enough periods of time to complete simple tasks that we do every day and take for granted.  His olfactory senses peak off the charts when new smells and foods are introduced which cause huge sensitivities to new foods and new environments.  Sounds are his enemy.  Especially if there is no order to it.  He clings to music and melodies because there is consistency and structure to each musical movement.  This is one of the best mechanisms that he learns through.  The world of  imagination and make believe is his reality.  He is a master of that realm.  He can shut off sounds, talking and chaos around him and simply “be” in that world he has created.  It is a reality that he has 100% control over and therefore he prefers to live in that isolated world than in our real world.  A real world that doesn’t understand him, doesn’t openly accept him and would rather he be kept away with other kids like him.

That is a snapshot my Dalton…and of many other children/adults that are affected by Autism Spectrum Disorders and ADHD/ADD.  That is what he is working SO HARD to break out of and what WE and our Brain Balance team are working to break him out of.  That is why he is my hero.  This is his story.  I know that many people get tired of seeing my posts on Facebook, Twitter that illustrate his “tiny progress” when they have no idea what a HUGE step that is for him.  To those of you that feel that way…please don’t feel obligated to read my blog.  I am not writing it for you.  I am writing it for myself as a record of our journey…and it gives me hope and strength moving forward when I need a little extra encouragement after he has had an exceptionally challenging period of regression.  And I am writing it for other parents like me that face the same daily challenges that I face.  That are looking for help that they may not know is out there and available to them.  That may be considering researching this program a bit more but want to hear about an individual journey going through the program instead of just a testimonial letter or video documenting their successes after program completion.  There are parents that travel HOURS…one way…three times a week to get their children to our Brain Balance center in Edwardsville.  It isn’t just working for us…it is working for SO MANY other children/teens/adults…

Another bit of progress to mention…Dalton has never been a child to not have ALL of the buttons on his shirt buttoned.  Even if that top button is going to cut the circulation off at the neck….he will button that top button.  That all stems from his sensory issues.  He also prefers to wear shoes that are too small for him so they feel tighter on his feel.  Helps him feel his feet better.  But I digress…after putting his shirt on this morning he started to button his 3 collar buttons and I said (like I do EVERY SINGLE TIME he wears a shirt with buttons), “Hey buddy, why don’t you leave the top button unbuttoned?  Your shirt looks really cool that way.  It doesn’t need to be buttoned.”  He said, “It does?  Huh.  Ok.  I will leave it unbuttoned.”  And…he…DID!!  He left it that way when he left for school.  Now…that isn’t to say that he won’t come home with it buttoned because he had the need to feel that security during the day…but this morning he was comfortable enough and in touch with himself/his body enough to leave it that way!  Way to go buddy!!!

hero story book read

 

4 down with a holiday to boot!

Four weeks in and still going strong!  This past week added the additional stress of a holiday…EASTER!!!  Which not only celebrates the resurrection of our Lord and Savior Jesus Christ…but also brings the extra bonus of CANDY, CHOCOLATE and STRESSFUL EGG HUNTS!! Holy…Shit… It is for me by far the most dreaded holiday of the year.  Not even Halloween or Christmas brings me this much stress and anxiety. Coupled by, of course, the fact that I work at my church; so my work load and mental capacity are already pinging at an 11 out of 10… #someoneshootmenow. 

Did my best to plan ahead and bought little trinkets and “tiny” toys to fill Easter eggs with…didn’t plan to load the Easter baskets up with candy, chocolate and sugary treats (and I didn’t).  First test of the day was when pastor handed out baggies of jelly beans to all the kids during children’s time.  After church he immediately gave them to me and said, “these aren’t healthy for me mom”.  What?!?!  What just happened there?!?  Is he making the conscious choice to not eat candy?!?  On Easter?!?  Maybe today is going to be better than expected!! Woot!!!  Especially since he sat still and behaved almost perfectly during Easter Family Worship!!

After church he waited patiently for Easter Baskets to be handed out at home, ate all of his Easter dinner with modifications, and was BEYOND belief amazing during our Easter Egg hunt….I started to finally breathe a bit easier and enjoy my day a bit more fully.  #thankyoujesus

Things continued to chug along but then he got very distracted, very non-compliant and very tantrummy (yes I know that isn’t a word…but I don’t care).  Screaming for screen time, screaming and throwing himself around like a 3 year old… #regression #itswhatsfordinner.   Regression coupled with the Skittles filled Easter egg that he found and chowed down the entire thing down in about 30 seconds before I discovered it.  #prepareforhellonearth

Things escalated and escalated more as the sugar started to work through his system…until he finally crashed and was I told him he was ready for bed…which brought an additional unnecessary layer of stress to both of us because lo and behold…he was out of melatonin. At the same time his MiMi had to go to the ER to have 2 severely infected cat bites treated…which completely sent him into an heightened anxious and worried state.  

Lots of talking, lots of essential oils and bedtime stories later…he fell asleep peacefully.  #whatarollercoaster. Keep in mind that I have 2 other kiddoes…one that ran an unexplained fever and was lethargic, clingy amd whiney all afternoon and into the night…AND the other was breaking out into her typical hive like rash from stress and anxiety and was going back and forth from pinging like a drop of water on a hot skillet to being a “i dont want to anything i dont want to do” uncompliant, teenage drama queen self… #ineedjesusandabottleofwine

In all seriousness though…still seeing strides and progress in Dalton.  More consistency of the same types of behaviors I have previously mentioned in earlier blogs.  I think the most notable for this past week is his increased interaction with his little brother QT and has been sharing more, playing more and being more affectionate with him. 

We have our first progress report with Brain Balance this Wednesday night…hoping for good news beyond expectations!!