Monthly Archives: March 2013

My Biggest Fear And How YOU Can Help

Stop the r-word.

Stop the r-word.

Sure, at first glance, Braxton doesn’t appear to have any medical issues.  In fact, most only see the handsome, smiling baby staring back at them, but things are not always what they appear to be.  That brings me to my first issue: What does “disability” look like? Does a person need to appear physically deformed before you consider them disabled? Before you knew Braxton, did you know “disabled” people could look…”NORMAL”? There is no standard of what people HAVE to look like in order to be classified as disabled, nor should it matter what they look like to deserve respect! That brings me to my next issue: RESPECT.  One of the ultimate forms of disrespect is name-calling and using words like “retard.” Mentally Retarded was once an official medical diagnosis used to describe many individuals who were “slowed or delayed in cognitive ability” (the official definition of “retard”).  Wait a minute…what do you mean “was once an official diagnosis” ? Yup, ONCE.  “Mentally Retarded” is NO longer recognized as an official diagnosis. The term has been stricken from legislation, healthcare policies, and diagnostic terms partially due to the extremely negative connotation the word now has.  Over the years, society has taken a medical term and the individuals it was ascribed to and transformed the word in such a way that not only is it mean and hurtful, it completely demeans the worth of millions of individuals.

Finally, this brings me to one of my biggest fears.  Eventually, Braxton has to go to school.  I am terrified of that day.  I’m not afraid of him being in school, but I am afraid of the other kids he will be in school with.  We are still so unsure of what the future holds for Braxton with whatever diagnosis he may have, but I’m certain he will have cognitive delays.  At 20 months, Braxton is actually more like a 10-11 month old baby developmentally.  It is possible that he “catches up” and maybe even has “normal” cognitive ability, but no one can tell me that with any certainty.  Who knows if his diagnosis may also bring physical deformities later in life – there is so much we don’t know right now, and most days I silence those thoughts and thank God for the blessings of today.  I’m so thankful that Braxton is doing as well as he is, but I know he’s still not where he should be.  I’m so scared of Braxton going to

Teach your children to be respectful

Teach your children to be respectful

school and being bullied.  I know it’s going to happen and there is nothing I can do about it.  And THAT is what terrifies me – the nothing I can do about it part.  I’m deeply saddened that as a parent I cannot help shield my son from the cruelty and hate in this world, that all I can do is help prepare him to face it, and hope he is able to actually defend himself when the time comes.  Braxton will be one who the term “Mentally Retarded” describes.  Actually, the official term is now “Intellectual Disability” and I know this is something we will have to deal with.  Braxton is more than likely always going to be behind his peers.  I don’t even know if Braxton will ever even speak correctly.  He makes many sounds, but none are real words with meanings.  He may need an assistive communication device to talk to us.  Hopefully he will learn sign language to communicate with us too.  He’s always going to be different.  We will do our best at home to teach him to embrace his differences and not be embarrassed by them.  We will teach his sister how to stand up for him.  She already loves him despite any disability, and I’m so thankful she will also grow up and be more tolerant of others because she has grown up in such an environment.  But hate, cruelty, bullying, ignorance, and a slew of other things no child should EVER have to deal with we will HAVE to prepare for, because it will inevitably happen.

I will admit (although I’m ashamed to) that yes, I once threw around the word “retard” like it was nothing.  I felt like if I wasn’t using it toward an individual with an intellectual disability in a mean way that it was no big deal.  I was wrong. Very wrong. It’s a HUGE deal. Sadly, it took having my own child with disability to get me to understand this.  And that’s where YOU come in.  I need YOU to help me bring this issue to light. To understand it’s importance in our life and how it directly affects us.  I can’t change the future, I can’t stop the hate my son will face, but I CAN attempt to educate everyone I meet and everyone who reads The r-wordour story about the terrible effects of the “r-word.” The word is usually used in a derogatory manner to mean any number of things including: stupid, pathetic, loser, moron, idiot – none of which is how I would want my son to be described.  This is so much more than a language change; it’s a culture change.   We as a culture have to change the way we think about people with disabilities and words like “retard” and ultimately strike that word from our vocabulary altogether.  You may not realize that your choice of words is harmful to people, but I’m here to tell you that it is.  The r-word hurts million of people and kids like Braxton.  If you wouldn’t want someone picking on Braxton, you shouldn’t stand for anyone slandering another child similar to Braxton.  When people are called out for using the r-word the standard response is something like “Oh, I didn’t mean YOUR kid” or “I didn’t mean it like THAT” or “well, you know what I meant” No, actually I don’t know what you meant.  From where I stand you meant to say that you did something stupid or foolish, or that someone else did something pathetic, or that someone is a loser.  Why not say that? Why not choose another word? Why not strike the insult altogether? The Special Olympics started the “Spread the word to end the word” campaign several years ago to tell people how harmful the r-word is and to get people to think about what their words mean.  Today is the national campaign day to spread the word.  There is still time for you to go to r-word.org and add your name to the list to pledge to STOP the use of the word “retard.” Little by little we can all make a difference for Braxton and all the children like him.

Spread the Word to END the Word

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Spread The Word to End The Word

So today is “Spread the Word to End the Word” What word might that be? The “r-word,” you know, “retard.” Although this post doesn’t specifically deal with the “r-word,” it’s about how words can hurt and ultimately has the same underlying goal: RESPECT! People of ALL abilities deserve respect no matter what. I will probably write more on the “r-word” later, but for now re-read this post I wrote last year about respect and tolerance for children with disabilities.

Journey Full of Life

If there was ever a question I absolutely abhor hearing, that would be the one. [Notice, I used abhor, not hate, not dislike, but abhor – extreme repugnance or aversion; to detest utterly; loathe – get the idea?] This one simple question can cause so much damage and most don’t even know it.

Let me first make clear, I don’t care what other people think or have to say about my kid. It doesn’t make US treat him any differently, love him any less, or change his plan of care. Kids, however, are another story. Sure, he’s not old enough now to understand the inquisitive eyes, but one day he’ll see just how cruel the world is and wonder what’s really going on. We took Braxton out a few times over the weekend after his surgery, and you would NOT believe the ugly looks he got. While I may just…

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Neurology Update

Braxton looked like such a big boy waiting to be called

Braxton looked like such a big boy waiting to be called

Yesterday, I took Braxton to follow up with his Neurologist.  Overall, I think it was a pretty good visit…we didn’t receive any bad news or anything, so I guess that’s a good thing.  Our neurologist is very nice and extremely knowledgeable, but it still seems with most of our doctors, that they literally review the chart about 5 minutes before walking in the exam room.  They tell me things they’ve already told me before (perhaps they think I’ve forgotten, seeing my preparation with charts and spreadsheets in hand you’d think they’d know better) and ask me questions I’ve answered for them a hundred times.  I get that you have a lot of patients, but would it be so difficult to do a little more prep and at least make me think you care? =/ Ok, vent over, back to the appointment.

We went back over the medical history, and he asked if there were any new developments…doctor, we haven’t seen you in 6 months, of course there are new developments, but would you just ask me what you want to know, otherwise we’ll be here all day.  We discussed Braxton’s initial Brain MRI again, and he reiterated that Braxton has a dysplastic corpus callosum.  He mentioned though, that this wasn’t the CAUSE of all the other issues, that there was some other root that was to blame.  [This is actually a question I had previously, because looking up signs and symptoms for agenesis of the corpus callosum showed several things that Braxton has done or experienced. Part of me thought, “Hey, I’ve got it! There is no other problem, it’s because of this that everything else is happening!” Whomp. No such luck.]

Naturally, he told me it was critical that we find the genetic cause for everything.  I told him we were waiting for the results from our Exome Sequencing, and he looked and didn’t see anything in the file, but said he’d talk to our Geneticist since she is in the same office as him and see if he could find anything out.  The doctor pointed back to the physical features Braxton has that point to a genetic disorder (prominent ears, forehead bossing, etc)  and noted since multiple systems were involved that it was not simply something neurological in nature.  He told me that developmentally any issues that arise from this would be closer to those that affect people with mild cerebral palsy.  He did not say that Braxton has CP, but that his issues would be similar.  I was also told that Braxton’s condition could be noted as Static Encephalopathy – meaning a disease or disorder of the brain that will remain unchanged.The good news in that, is that it can’t get worse.  Doesn’t necessarily mean it can get better, but at least we know it won’t be worse (always reassuring). The key to all of this is stimulation and intervention.  How do we do that? By taking advantage of services and therapies, which we are already doing.  I am SO fortunate that we were hooked in to all the therapies we needed shortly after our discharge from NICU.  I know this is not the case for so many and it breaks my heart.  Knowing that kids CAN be helped IF they are helped early on, but don’t get the help they need because they fall through the cracks and end up worse than they should be just kills me.

Braxton was showing off the entire appointment.  He was babbling, sitting up, pulling forward to crawl, pulling up to stand, picking his feet up, he just couldn’t stay still.  The doctor obviously noted my confusion and fear and said, “Hey look at him, look at how great he’s doing.  You certainly have the therapies you need and to see his progress is pretty cool.” Yup, the doctor said Brax was “pretty cool” [that’s not news to us 😉 ] I asked about needing a new MRI and he said that he definitely wants us to have the MRI repeated, possibly this summer.  (We’re going to try and coordinate with ophthalmology so Braxton doesn’t need to be put under anesthesia more than necessary) It is important to monitor the brain development to ensure that there is nothing new or worsening.  Although he mentioned the condition would be unchanged, the continual testing and monitoring is necessary, because..well, because you just never know.  Just because it shouldn’t change, doesn’t mean it won’t.

Recently, I read about gelastic seizures, also known as laughing seizures, and became concerned because I felt like Braxton may have had a few episodes. These “laughing seizures” are just that, random outbursts of laughing/crying for a period of time.  I can recall at least 3 times that Braxton just started laughing for no reason, we thought it was cute, but then the laugh turned in to more of a cry with a grimace but still sounded like laughter at times.  It was the weirdest thing.  At the time I didn’t think much, but then I came across the article and my heart about fell out of my chest.  Everything I read, said these kinds of seizures are difficult to detect on an EEG which measures brain activity and can determine if a child is having seizures.  But when the doctor realized we haven’t had an EEG done since birth (ahem, SEE why you should look at a chart BEFORE you walk in the room!), he said we needed to have it done very soon.  An EEG will tell us if there is any slowing of Braxton’s brain activity that would be a concern or lead to seizure activity.  I only know that when I was younger I had febrile seizures, that would only occur when I had a high fever.  One of my sisters had one when she was 6 or 7 and was put on anti-epileptic medicine, but it was the only one she ever had.  All of that to say that seizure activity runs in the family, so Braxton definitely NEEDS to be tested.  We will return in 2 weeks to have that done. He also recommended that we start seeing the Developmental Pediatrician in the office who can monitor Braxton’s developmental delay.  We already have one, but their office stops seeing him at age 3, so it was recommended we go ahead and make the transition to someone who will follow him for a longer period of time and can note progress from Point A to Point B. So, that’s just one more appointment to schedule. Oh, what fun!

I asked him for the technical diagnosis with regard to the corpus callosum since it has come up in personal circles with other moms looking to find someone with experience with a particular callosal disorder.  The technical diagnosis for Braxton is Hypoplasia, which is a thinning of the corpus callosum.  The entire structure in his brain is present, it’s just thinner than it should be.  There is also Hypogenesis which means part of the structure is missing.  Confusing, I know, which is why I asked for clarification.  I’ve since looked into the National Organization for Disorders of the Corpus Callosum and through further research, I learned that these fall under an even more broad category: Dysgenesis of the Corpus Callosum (DCC) – which means the callosum developed, but developed in some incomplete or malformed way. If you are like Joseph, you don’t want to hear all the technical mumbo jumbo (that’s mom’s specialty), but instead you want to know what does that mean for my kid.  Here is what I pulled from the NODCC website with regard to behavioral expectations.  [Of course, whatever Braxton’s genetic disorder is, will more than likely alter some of these expectations, but at least we have them for point of reference.  Regardless…it’s still a very long, hard road ahead.]

From the NODCC:

What are the common developmental problems that may occur with disorders of the corpus callosum?

  • Behaviorally individuals with DCC may fall behind their peers in social and problem solving skills in elementary school or as they approach adolescence. In typical development, the fibers of the corpus callosum become more efficient as children approach adolescence. At that point children with an intact corpus callosum show rapid gains in abstract reasoning, problem solving, and social comprehension. Although a child with DCC may have kept up with his or her peers until this age, as the peer-group begins to make use of an increasingly efficient corpus callosum, the child with DCC falls behind in mental and social functioning. In this way, the behavioral challenges for individuals with DCC may become more evident as they grow into adolescence and young adulthood.

 Behavioral Characteristics Related to DCC 
This is an overview of the behavioral characteristics which are often evident in individuals with DCC.

  • Delays in attaining developmental milestones (for example, walking, talking,reading). Delays may range from very subtle to highly significant.
  • Clumsiness and poor motor coordination, particularly on skills that require coordination of left and right hands and feet (for example, swimming, bike riding, tying shoes, driving).
  • Atypical sensitivity to particular sensory cues (for example, food textures, certain types of touch) but often with a high tolerance to pain.
  • Difficulties on multidimensional tasks, such as using language in social situations (for example, jokes, metaphors), appropriate motor responses to visual information (for example, stepping on others’ toes, handwriting runs off the page), and the use of complex reasoning, creativity and problem solving (for example, coping with math and science requirements in middle school and high school, budgeting).
  • Challenges with social interactions due to difficulty imagining potential consequences of behavior, being insensitive to the thoughts and feelings of others, and misunderstanding social cues (for example, being vulnerable to suggestion, gullible, and not recognizing emotions communicated by tone of voice).
  • Mental and social processing problems become more apparent with age, with problems particularly evident from junior high school into adulthood.
  • Limited insight into their own behavior, social problems, and mental challenges.

These symptoms occur in various combinations and severity. In many cases, they are attributed incorrectly to one or more of the following: personality traits, poor parenting, ADHD, Asperger’s Syndrome, Nonverbal Learning Disability, specific learning disabilities, or psychiatric disorders. It is critical to note that these alternative conditions are diagnosed through behavioral observation. In contrast, DCC is a definite structural abnormality of the brain diagnosed by an MRI. These alternative behavioral diagnoses may, in some cases, represent a reasonable description of the behavior of a person with DCC. However, they misrepresent the cause of the behavior.

I sure am thankful for that last paragraph, particularly the last sentence.  One of the doctors recently recommended further testing for Autism, which I just didn’t think made sense, and after talking with our therapists, primary care doctor, and asking neuro yesterday, they all said that is an incorrect primary diagnosis to give Braxton.  Neuro said that some of the symptoms he exhibits could end up giving him a secondary diagnosis of something like Autism at some later point in time, but at this point that was not the root of the problem and it had been misattributed.  *sigh* always more questions than answers.  But, good news, I think ?

Waaaaa, he's so big!

Waaaaa, he’s so big!

Baba ma da baba

Baba ma da baba

Sorry for the long post, this is one of those ‘for my own information and if I don’t post it here I will forget or never find it again if I write it down in a safe place.’

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