I've had Enough with Polite Discrimination

Enough. I have had enough.

I am done with the waterboy with T21 who is strong enough to lug dirty towels, loves the game enough to clean up after others play it, and show up to do his job rain or shine, be "given" the opportunity to run an unopposed play.

And then what? We all sit around applauding the charitable act of the team - which it was - who gave this kid a chance to "fit in" for one play? Are we serious?

OK, so maybe football's a brutal sport that could potentially harm the young man because of physical differences, but then what about the Home coming king bull? I'd love to know if these "charitable" students who are smiling for the cameras in their ball gowns after "charitably" voting for the boy or girl with T21 have invited them to parties when there was no news reporters in sight? Do they sit with them at lunch? Do they have conversations with them about how hard it is to "fit in" in high school with or without an extra chromosome?

Maybe they do, I would never assume to judge.

All I am asking is that you the reader, the community, and the world at large afford people with T21 the same courtesy.

Enough with "awareness." Sorry for the offense for those genuinely believeing it is good, but awareness walks, awareness days at the ball field, awareness shirts, on and on.

Other people are aware that our loved one's exist. They will tell you they think our loved ones are sweet (because aren't they all?) and lovable. What they wont tell you is that they also believe our loved ones are LIMITED!

Limited?

Put your three year old with T21 in a kindergarten level reading class. I currently know over 300 people across the globe whose child with T21 was a fluent reader before age 3.

Some typical kids struggle with literacy.

Call the news for the child with T21 who runs miles every week and have him explain how it helps him breathe deeper, speak clearer, and learn easier.

Some typical kids struggle with being sedentary and have speech problems.

Talk to a mother who has elected to homeschool her child with T21 because she knows it isn't an inability to learn, but the distraction in the environment that poses a challenge to an immature nervous system. Ask her if she believes she can fix it.

Some typical kids have processing problems.

Don't look at my son as limited until you look at your own and realize all children have strengths and needs.

And also, I have absolutely had enough with the "R" word discussion.
Guess what? I don't care if you use the word, just don't assume it applies to my son.
Assuming something about a child based on how they look isn't insight, it's discrimination.

Finally, I have had enough with people thinking it's compassionate (or in any way their ability) to "allow" a person with T21 a "special" opportunity to experience the joy of living in this world, being accepted, competing, and "fitting in."

It isn't compassionate, it's ignorance. I promise you my son - and MANY others with T21- will not only compete, but they will succeed.

And they wont ask your permission.

3 Inches of Height in 2 Months, to What do I Owe the Results?

Happy Halloween!

 Anyone who is part of my Facebook group will recognize these photos, they were worth re-sharing here, I just love them so much!

 

 Lucas has been working very hard on ice skating! He starts formal lessons December 5th, but already I have been faced with "Mom, I play hockey too?"

Of course Lucas, because having only two children in travel hockey leaves Mommy and Daddy with way too much free time on their hands.











This is Lucas post skate.


If he looks like a hockey player and smells like a hockey player......








Although Lucas's overall health has been exceptional (yes another calendar year without illness of any kind - brings the tally to 4.5 years!) and his learning incredible, I have been stymied by the question of growth.

It never made sense to me that short stature was "just Down Syndrome." Maybe, but why? Everything I had read pointed to one of three things was at the heart of the issue - Thyroid, Disgestive system function, and nutrition.

For over two years his thyroid has been very stable (all measures including thyroid antibodies). Today at the biomed she even commented that we don't want it too low, his TSH was well under 1.0.

I can honestly say in Lucas's 6 years of life he has never had an issue of a gastrointestinal nature. Most likely a combination of his diet and supplements, his digestion process is excellent.

And as far as nutrition, I should be so lucky to have the willpower to eat as cleanly and properly as Lucas. (This includes monthly bloods, analysis, and supplements).

So then why was growth still lagging?

At our August visit to the biomed, she recommended we look at Human Growth hormone levels (Which surprisingly came back WNL's) as well as optimize methylation. (

For those wanting information about the processes of methylation I would direct you to Andi Durkin's blog, DS Daytoday - it is a virtual encyclopedia of explanations and simplifications! She also has full bibliographies for further research.

Prior to today's visit I was alerted to an incredible Doctor out of Oregon who posted this article in The Down Syndrome Treatment Center of Oregon group:

Global DNA Methylation: Nutritional Correlates and Child Growth.
http://deepblue.lib.umich.edu/handle/2027.42/97956
click "download" for full dissertation

It wasn't news to me that hypomethylation was a huge problem in children with T21, but I didn't ever realize the direct correlation to growth - so I thought this information worth sharing.

In August, in addition to all of the methylation boosting we were already doing, we changed 2 things:

1. We replaced sublingual methylcobolamin with B12 injections 2x/week (Not sure who loves this more, Lucas or I)
2. We switched to MSB methyl plus from MSBv7.

Today, 2 months and 5 days after our August visit?

3 Inches of Linear Growth!
 I did see the clothes getting shorter, but there is a certain quality to this growth spurt. Lucas's hands and feet looked not only bigger, but more mature (if that makes any sense).

His running is solid and in fact he now runs a 13 minute 15 sec. mile. If anyone would like to be his new running partner let me know! :)
 He loves to ice skate and is able to do so without the pusher for short distances..ankles strong, no pronation.

His body feels solid, his thighs and arms feel muscular, and he flies down the 18' of brachiation bars with only minimal support.

This also has come at a time of most impressive intellectual change from maturity, to sentence structure, to academics (who knew Home schooling would be my very

favorite thing in the whole world? Wish I had a do-over with my other boys...their school is wonderful, but this journey with Lucas makes me miss not having it with them!)

 

Lucas and Ryan working on their individual dioramas

Lucas's Finished Product

And summary!

Not sure if this means Lucas is a genius or a smart ass. Most likely a little of both.

I wish everyone a Happy Halloween as we creatively try to keep the sugar and dyes away from the kiddos!

I Got It

Summer is definitely winding down and as usual, we are winding up. 

Lucas turns 6 on Friday. 

6. 

I can't believe it.

After six years on this journey with Lucas, I have to admit...everyone was right about one thing...Having this child irrevocably changed our lives.

Just about everything else however, they were stunningly wrong.

Lucas's sixth birthday marks 4 years without an illness. I can't believe I instinctively know how to keep him healthy and how it also applies to my other children as well. I can't believe he's never had an ear infection, never had antibiotics, and has never been constipated. I wish I could go back in time and tell myself that on the day of his birth.

Lucas's sixth birthday marks the start of his formal school years. I can't believe I not only feel confident enough to homeschool him, but that any other option feels horribly wrong. I can't believe that his IHIP (Individualized Home Instruction Plan) spans grades 1-3 and I am putting lessons plans together for things I wasn't sure he'd ever be able to learn on the day of his birth.

I can't believe he can read. Not Cat in the Hat, or Go Dog Go, but magazines, newspapers, advertisements, and text books. Every time he he reads to me I feel empowered, and a bit humbled. His reading also brings challenges - as Noah said the day the above photo was taken - "Lucas's reading is really becoming a problem!" We were trying to walk around the fair and ended up chasing Lucas all over creation because he saw a sign for a train exhibit, or ice-cream (I know dairy is a no-no, but how on earth could I refuse his request for Panda Paws with peanut butter swirl???)

And on that same note, I can't believe we were at the fair all day long and at 9:45pm we were still chasing him. (We really have to work on slow down and stay with me!) On our way out he pointed and said said "Look Mom, Boxall's I Got It!" Yep, he got it.

 

I really can't believe that this journey felt so lonely on day one and six years later has brought women into my life from around the globe that feel like family. Our facebook group is growing steadily and I find myself going there first thing in the morning to check in with everyone, and last thing at night to see how everyone's day went...what kiddo achieved what, and what new ideas these brilliant women had.

I can't believe I'm not jealous of other children's accomplishments, rather - I look at them as a to do list.

I can't believe I don't ask "what if" any more, I only ask "how." I guess that's because we've never not found the "How" yet.

I can't believe Lucas is the son that looks most like his daddy (and a lucky daddy he is!)...

or that he would have such an amazing relationship with Noah who is six years older...

I can believe however, that Ryan would be the one to teach him all sorts of "fun" things...

 

 

like "mom doesn't really mean it when she says don't play with her phone."

 

I can't believe six years has changed pretty much everything I learned and believed to be true about therapy, interventions, education and medicine.

And lastly, I can't believe I am lucky enough to be this little boy's mother and that I would be so much less if he was never given to me. I personally still have a looong way to go, but just the other day I read something that further convinced me to stay the course..

The first graduate from the University of Kentucky with T21 was interviewed. 

She didn't credit a pill, or a therapy, or a single intervention as the key to her success (although she did say she grew up taking vitamins to provide her with the things her body needed).

She stated (as has Karen Gaffney and many other adults with T21 that the world looks at as "outliers") that the keys were:

 

- Learning to read very early

-Having parents who taught her and kept her out of activities that didn't encourage her to achieve and excell

This is good news indeed, and I can believe it.

Happy Birthday Lucas!

I can't wait to see what unbelievable things this year will bring!

 

Six Months Post Expansion

Oh, they think they're sooooo funny. Did they really think there was any way I was letting them buy all the chips they put in the cart???

One of the two main reasons we had decided to aggressively pursue palate expansion was to optimize function of the pituitary gland. Anatomically, it is cradled in a skull bone that is directly affected by a narrow mouth. According to Dr. Weston Price, this compression results in the decreased ability of the gland to function properly resulting in many things we commonly see with our children.

Pretty much everything on our list has some roots here; growth, intellect, hormone production, and another that I was very interested in - Nocturnal Enuresis; bedwetting.

Continence during the day is one thing - anyone with children knows the potty training gig. We allow the child to move through a process that ultimately teaches them to identify the need to use the toilet and then void. Night-time incontinence is different, and until I started reading Price's work I simply thought it was because the child was asleep and didn't realize they needed to void.

Not so.

The hormone arginine vasopressin is naturally produced in a circadian rhythm by the hypothalamus and stored in the pituitary gland. Until the gland has produced sufficient levels of this hormone, the child's brain isn't sending the correct signals. (Just a side note, I can't help but notice all of the discussion about neurotypical kids and night time continence. I firmly believe since we've been on this path with Lucas that our western diet is creating smaller and more maladaptive bone structures. Dr. Price outlines it perfectly in his research. Might this be the key to night time continence for neuro typical kids as well? And now, that we are generally seeing kids begin with orthodontics around age 7, is there a correlation between expansion and night time continence in them as well?)

When we started the expansion process, Lucas was still in pull ups for sleeping.  We discontinued them about 3 months ago because Lucas was continent 4-5 nights during the week. As of late he was fully continent at night but would wake very early wiggling around because he had to go to the bathroom.

Last night I was startled to wake at 3 a.m. with Lucas standing next to my bed. I asked him what was wrong and he said "I have to go to the bathroom." So, in my sleep induced coma - mother of the year emerged - and I said, "OK, go." And he did. Fully emptied his bladder, (washed his hands!) and went back to bed.

Under no circumstances can I call this a coincidence. It has methodically been improving since we completed the expansion...and although our daily program has increased significantly with the addition of a respiratory excellence component, his speech is beginning to explode. All parts of speech evident in sentences that are 4-6 words in length, prepositions, articles, descriptors...all there.

There are so many approaches to our children, and when they are looked at in isolation, they would drive us insane trying to account for everything. For example- trouble with balance? PT. Trouble with speech, ST. Trouble with fm control, OT. Trouble with ADL's, OT, Behavior mod. Trouble with behavior, Psychologist. Trouble reading? Special Ed. And then, as if that isn't enough - we get even more specific - The PT believes in NDT, the OT wants the child to focus on a sensory integrative program, the Speech therapist wants oral motor expercises, Special Ed thinks the key is to slow things down (don't get me started on that one) and to focus on one thing at a time, and on and on.

As an OT and now a mother, I wholeheartedly believe this approach is missing the boat. The key is not to breakdown skills to the very smallest component and put together plans for each, The goal is to look at every area of need and figure out where they all intersect - because they do. Optimally, we can use the "Lists of what will be wrong" at some point in the future to draw those conclusions BEFORE the need becomes evident. This allows us to put real programs in place that become part of the child's day - everyday - to ensure we do not see those problems emerge.

That's what we're doing so very successfully - without therapists, without special ed - without school - and without doctors.

Tomato, Tomatis...

Lucas's tolerance is pretty amazing!

It is really important that I make it clear that this post is written as Lucas's mother and not an OT. From the very begining of our journey I have found myself divided: what I thought I knew, and what I now know.

A few years ago, I looked at the auditory processing outcomes of traditional models of treatment for children and adolescents with T21 and I decided we were going to find something else, and further we couldn't afford to wait. It had to be something that was natural, could not harm Lucas, and most importantly had the ability to actually change the way his brain was perceiving sound.

I read a story about Alfred Tomatis, a French otolaryngologist, and how he had worked with opera singers whose muscles of the inner ear (which need to vibrate very quickly to detect high frequencies) had become "flabby" over time from the frequent and intense sound they were receiving. He completed programs with them which gated different sets of frequencies through head phones to retrain their "listening" ability. Although the concept is incredibly complex and scientific, that was the basics for me.

You had me at "flabby." If the opera singer lost the ability to hear the higher frequencies and consequently couldn't hit them with her voice, how would my son's speech and processing develop if he never perceived them to begin with? Was it likely the muscles of his inner ears were flabby when the rest of his body was low tone?

I was elated to realize there was a great Tomatis clinic 20 minutes from my house, and Lucas completed all three "Loops" when he was 18 months old. At the time, he was babbling in monotone and very quietly. Upon completion, we noted a sing-songy quality to his babbling and jargoning quickly followed. Lucas began saying his reading words out loud and we also had noted Lucas indicating the need to void after the loop that concentrated on basal sounds (which tunes the child in to their body).

Whether I speak as a mother or an OT, the bottom line is that there is only one way into a brain - our senses. If walking and balance is the outcome of poor or incomplete neurological integration, then what will "practicing" walking and playing balance games do? I used to think it would somehow help the brain organize - I now know it simply helps the patient practice his maladaptive skills. The same can be said for attempting to improve handwriting by practicing handwriting, speech by speech drills, and processing by...well, what do we do for kids who have difficulty processing?

Depending on the type and severity of processing delay there are many programs and techniques available, in Lucas's case auditory processing seems to be our Holy Grail. It is the reason the child can learn complex things quickly at home, but doesn't even seem to realize the teacher is talking to him at his reading group. At home, Lucas can carry on a 6-7 turn conversation, yet can't even respond to a "hello" at the noisy market.

When you talk to me, I can focus on your voice and ignore the whir of the lights, the humming of the refrigerator, and the music on the radio. Sometimes children with "auditory processing difficulties" feel the two sets of stimuli competing with each other. After Lucas's listening test (NOT hearing test, his hearing is very acute), it is clear that he isn't even experiencing the competition of stimuli, he ignores the higher frequencies (speech) when a lower frequency (environmental) is present.

How in the world could I ever put him in a classroom until this is sorted out? Even worse, I filled out 2 sets of the Vineland (a standardized questionnaire) for him; one as a caretaker and home-schooler, and one based on his performance in a "classroom," his reading group. Some of Lucas's academic skills were pushing the 7-8 year old level, while his basic classroom skills were at the 2-3 year level!

With all of this in mind I set up an 8 day Tomatis "bump" for Lucas. The head phones have the ear piece obviously for the higher frequencies and a bone conduction piece for the lower. The sound is very low and I have brought his reading and knowledge programs with me to do with him each day at the clinic while he is listening. 

Tomorrow is his last day and I most certainly am keeping careful notes on changes I see in him. I can say that this morning he went to the market with me, pushed the cart, got everything on his list and had a nice conversation with the lady who runs the store. 

If you are so inclined to learn more about Tomatis, it is easy to research and if you are local I have a wonderful contact for you.

Trouble, Trouble, and Trouble on Easter!

 
Alfred A. Tomatis was an internationally known otolaryngologist, and inventor. He received his Doctorate in Medicine from the Paris School of Medicine.(1)

His alternative medicine theories of hearing and listening are known as the Tomatis method or Audio-Psycho-Phonology (APP). Tomatis' approach began as an effort to help professional singers in his native Nice based on his idea that errant hearing is the root cause of a variety of ailments. His Listening Test and later his Electronic Ear therapy were designed to alleviate these problems.(2)

1. Sollier, Pierre (2005). Listening for Wellness.

 2. Tomatis, Alfred A. (1991). The Conscious Ear: My Life of Transformation through Listening. Paris: Station Hill Press.

World Down Syndrome Day Isn't about my Child, it's About Yours

3/21 -World Down Syndrome Day.

Today, I am celebrating with my son who reads, writes, is never sick, and happily works a grueling program with me everyday while typical peers achieve the same thing without effort - and in the process can do many things “typical” 5 year olds can not. Our goal is not fitting in with peers, but rather to emerge as a leader. Lucas will join his peers when our work is through, he will sit for entrance exams to private high schools and he will go to college.

Today is not about bringing awareness to my son and finding a way for him to fit in the world. It definitely isn't about the cute little "special" category into which prejudiced people like to fit my son. It isn’t about “tolerance” because society has no right to arrogantly decide they have the choice to “tolerate” my son - or any member of the human race - as if the random chromosomal alignment that shaped my son couldn't just as easily been you or your child.


This day isn’t about my child, it is about yours. Will your children accept Lucas as a peer or look at him as less? Will your children accept his accomplishments as valid, or dismiss them as a fluke? Will your children simply see his almond shaped eyes as part of him like skin color or orientation - or will they use it as a means of segregating him. How will you feel when Lucas sits next to your child at the induction ceremony to National Honor Society? Or asks your daughter to the prom?

It isn’t about “inclusion,” because arrogant school systems who fail children like my son have convinced parents it is their child who can not learn, instead of a system that can not teach.  It isn't about specialists ingrained in the past who call my son "high functioning" when he can do things his typical peers can't. I have never asked the world to see my son as special, or to make special considerations for him, nor will I ever. He is a member of the human race with strengths and weaknesses - the same as your child.

This day is about equality, respect, fairness, and humanity.

You have my word that is how Lucas is being raised to treat your child.

It's coming Together...

It's all coming together...major frenzy before the conference and major excitement!

Stay tuned for a big announcement....

Enough with Holland

I am in the midst of one of the most emotional and gratifying processes of my entire life...this project has become a physical embodiment of the deepest love I've ever known. I've gone over it and over it because every word on every page has to be right - I owe that to Lucas.

I can't help myself from reading daily articles from around the globe on issues of T21. Some focus on hard science, some on treatment, and some on social issues. Usually hard science excites me because the more we understand the more we can affect, the ones on treatment bore me because the majority of the ideas are rehashed paradigms from decades past; where therapy was reactive and delay-based.

The articles written on societal issues probably give me the most insight, not because of the content of the actual article, but because of the comments that follow. Today, I came across a comment from whom I don't know, but she was explaining what "Welcome to Holland" was all about - I won't bore you with it, I'm sure you've had it shoved down your throat as the most compassionate and beautiful pieces of "literature" ever written.

Am I the only one who is insulted by the insinuation that my son was an "mistake" that I will learn to see the beauty in and maybe even love someday??? I guess if you are an outsider who reads it, it wouldn't occur to you, but this piece of "literature" is handed out like medication to alleviate the anxiety of new moms with a baby who has T21 (among other diagnoses). It is handed out in prenatal classes and support groups. Maybe over 20 years ago when it was penned it offered some consolation, but today???

I tell you what, if I got on a plane expecting to go to Italy and ended up anywhere else, I'd have somebody's ass for it. They'd pay me royally for the screw up that caused me inconvenience, money, and wasted my vacation time. I'd demand all sorts of things in my anger and disbelief and under no conceivable circumstance would I get off the plane, look around and say, umm....well, maybe.....

Having my son was like getting on the plane and having it crash, then  jubilantly realizing I was still alive... and not only was I still alive, but I loved life more, I loved my children more, I was more determined than ever before to toss out the crap that wasn't important and spend the rest of my life trying to live up to the beautiful and amazing gift I had been given. I saw beauty in things I never noticed before, and I felt power in the fact that I had these insights that I previously couldn't have fathomed.

My son was not second best, he wasn't something I needed to learn to accept, he wasn't Holland ... he wasn't even Italy.

He was and is one of the most amazing children I've ever known, he's the child I'd die for a million times, and will spend the rest of my life changing the world for.
 

Long Overdue Update!

I have been wanting to get this update out for so long. My dad passed away the day before Thanksgiving and then the holiday season just swallowed us whole with all the boys' activities. Now I am working very hard to finish everything for the conference including - yes - my book which has taken way longer than it should have. I know the information in the book is important, but my boys wont wait - so I've been doing my best fitting it in - but the time has come, it will be available, soon.

I don't even know where to begin with my thoughts on palatal expansion - I guess the best place is with a photo, or 2...
                                                                  

               

Before                                                                                        After

Physically, there is a much bigger space between his front two teeth (and it showcases nicely just how badly he had damaged his teeth before we addressed the grinding!) But the amazing difference to me was the overall shape of his mouth and face. If you look at his back teeth (the ones covered by the expander) look at how far in toward midline they were on the before picture, they were almost pointed inward. Looking at the "before" photo you can see how much space he had on the roof of his mouth - definitely less than the width of his tongue.

The "after" photo shows all of the teeth in alignment and in an outward position. To see Lucas in person you notice immediately when he smiles that it appears that he has a ton of teeth, his cheeks and maxillary area appear different as well.

In the following picture, you can't see the actual palate, but you can see the overall width of his mouth. The silver brace that extends down to the teeth sits off the roof of the mouth - definitely enough room for his tongue now!

I now know for certain the "large tongue" phenomenon is not true, our kids have very small mouths for a normal sized tongue to fit in giving the appearance of an enlarged tongue.

 

    
Aside from the physical, the changes have been dramatic and some of them coming as quickly as two weeks after we had begun expansion.

1. Sleep - Hands down the biggest change we saw within the first two weeks. Lucas slept through the night, breathed only through his nose, and had no episodes of waking. Sleep apnea is one of the biggest areas our kids can have difficulty with and to remedy, our physicians perform surgical procedures to remove tonsils and open sinuses. Sinus infections are a problem, to which many children with T21 are given maintenance antibiotics. In addition, the most exacerbated physical deformity associated with T21 aside from the almond shaped eyes is a diminished middle third of the face.  It stands to reason that enlarging the area and giving the maxillary sinus network proper drainage issues like sleep apnea, noisy breathing, and chronic infection would stop. I can not overemphasize the absolute change in this area.

2. Speech - This one I can honestly say I have no idea if it had anything to do with the expander or not, but it happened simultaneously so I can not rule it out. The first couple of weeks speech remained the same although articulation initially worsened simply due to the appliance in his mouth. After about two weeks we all felt like we were crazy...I'd find myself asking the boys "Was that Lucas?" Singing - keeping time with the song, expressions like "OOOH Mom, I like that!" Asking Questions, answering questions, having a 7-8 turn phone conversation - appropriately. Use of vocabulary (like when he told me his soup was not delicious!), volume of speech, yelling, naming the days of the week upon request, telling me it is "12:15 o'clock" when it indeed was 12:15 O'clock! Despite all of this the BIGGEST change is reading and he'll do it out loud. I know the preferred method of reading is silent, but let's face it, he is going to have to demonstrate the ability to read...and he is.

3. Health - As I had mentioned, the month leading up to Christmas was crazy. In effort to make everything alright, I did nothing "right." The worst failure was Lucas's diet leading up to Christmas. There were several gatherings where food was out and Lucas helped himself to things he probably hasn't ever eaten. Cookies (gluten, dairy, sugar, dyes), crackers, etc. We got all the way to December 23rd and guess who got sick? (Don't anyone ever dare tell me there is no proof that eliminating those things have no bearing on health.) After a miserable Christmas Eve and Christmas Day (goopy nose, sneezing, etc) I held my breath we would not have a respiratory issue. Indeed before we began this path, it would always go from a head cold to his respiratory tract. After two days, something astonishing happened, Lucas got better. He actually for the first time in his life figured out how to blow his nose, and did so. By the day after Christmas, he was ready for action (and of course I was getting sick!) I believe the improved ability for the maxillary sinuses to properly drain directly affected not only the length of illness, but it eliminated the opportunity for the infection to manifest in the respiratory tract.

4. Growth - all of the studies suggest there will be a growth surge within 6 months of expanding. I am being very disciplined about not measuring him everyday! Will let you know how that goes.

I am sure there are a ton of other little things that I am not even thinking of right now, but those were the biggies. Lucas gets his expander off at the end of January and I couldn't be more thrilled with the outcomes.

How I adore this little boy!!!