A friendly reminder

Please don’t tell me you are “sorry”. When you find out someone’s child is disabled (i.e., has Autism, Rett syndrome, Down’s syndrome, etc.) do not say you are “sorry” – we understand you mean well, but it is incredibly upsetting to hear. Our child is still our child. She has not died and we are not at all sorry she exists. We are madly in love with her. As you are with your child. Every accomplishment, development, laugh, makes our hearts sing! Just as your child’s accomplishments, development, happiness, makes your heart sing. Every tear she sheds breaks our hearts. Just as your child’s tears breaks yours.

Granted, ours is not a life we likely would have chosen. And we have had to drastically shift our expectations (like continental – tectonic plate shifts). And we have had to come to terms with a life completely different than the one we had expected to lead. And it is a challenge. And it is not one we would ever expect you to understand. And it is not one we would ever want you to lead…it is hard. And we are NOT sorry. Our child gives us unspeakable joy and you saying you are sorry about her is heart breaking and painful to hear. We only wish you could see her as we see her and enjoy her as we enjoy her…So do not tell us you are sorry.

Just that.

Lifted, almost verbatim, from Jocelyn Gould Turken, super Mom and autism advocate. ❤️

Lily was featured in this years NYC Disability Pride Parade. This kid is making headlines. And changing perceptions about what it is like to live with a disability. She is my hero.
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To supplement or not to supplement

Recently on one of the parent groups, a question was asked about whether or not it’s worth buying expensive supplements for your kiddo. I thought my response could be helpful to other parents on a similar journey so I’m sharing here:

I’ve been using Agape on and off for years. When I can’t find it or afford it, I use the stuff you get at wholefoods ‘child life’ I think is the brand. I also have used and am using a mix of other supplements for my kiddo on top of this. And have I seen results? How can you really know? And what results are you looking for?

My daughter isn’t ASD (autism spectrum disorder), she has a disorder that, among other things, can cause growth issues (i.e. head and feet and other body parts stop growing) and failure to thrive because of malabsorption in the gut. She also has sensory issues and struggles concentrating. She physically cannot sit still due her her disorder.

So what have I seen? Well one thing is that she is on the growth charts. And continues to grow (though her weight is very much on the low end of the charts, but so is mine). I also see that she is healthy. And is getting better at paying attention. But is it just because she’s maturing? Is it because she got lucky and doesn’t have the growth issues that the other girls with Rett Syndrome have?

I don’t know. But I’m going to keep supplementing her and ensuring she eats the cleanest and healthiest foods possible (she’s on modified GAPS) because it can’t do anything but help.

If you’re not comfortable paying for Agape, why don’t you try the child life supplement to see if it’s something your kid will even tolerate before investing in a big, expensive bottle.

This SN parenting journey is not an easy one. And I’ve realized that we can’t do everything all the time. So pick and choose the things you believe in and think can help your sweetie be the best kiddo s/he can be.

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Long and lean, happy and healthy!

The true star at the ballet

 

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A few months back, Lily and I were invited by her dad’s family to see a special ballet performance geared towards children with disabilities up in Connecticut.  Lily had a ball.  And as you will see (and hear – yup, that’s her yelping THROUGHOUT the clip), this kid had a GREAT time.

(Hopefully you can view the video.  For some reason, some browsers only show a picture, and not a link to the video.  Ping me if you can’t access it.)

 

The importance of genetic testing and Rett Syndrome…

I’ve recently been approached by two families who have concerns about their daughter’s development.  And both have asked me to share our journey to an accurate diagnosis.  If you remember, Lily was given two mis-diagnoses along this journey.  So I’ve decided to dedicate a post for families who are on a similar journey.  if you’re new to this site (you found me through middle of the night googling), please feel free to leave a message below and I’ll get back to you if you have any follow up questions.

Q: I am wondering if you could share with me a little more about your journey to an accurate diagnosis, as well as any providers or evaluations that you felt were significantly helpful?

To me, what was the MOST definite and defining moment for Lily was getting the genetic test results with the Rett diagnosis.  Here are the ‘steps’ it took to get there:

Autism diagnosis August 2012

Lily was talking and social and hitting all her milestones and then BAM.  At around 15-16 months, there was a major regression. The language went away, she became super aloof and disinterested and physically started demonstrating some delays as well.  She was initially diagnosed with autism at 18 months (both through Early Intervention and a private developmental pediatrician).

ESES Diagnosis November 2013

Once we started EI services (she was getting 20 hours of ABA, plus Speech, OT and PT), it became apparent that the autism label didn’t fit.  The words started to come back (and then go away – which is still happening).   She came out of her shell and was social and interested in the world around her again.  We then had a bunch of EEG’s done to try and figure out the underlying cause of her regressions and found out she had a rare form of epilepsy called ESES.  And we thought ‘aha! this is what is causing her regressions’.

Rett Syndrome Diagnosis January 2014

But while she was being treated for the ESES (using high doses of steroids that I had to inject into her leg every day which totally sucked for us both), we got the genetic results back (which we did to see if there was an underlying reason for the ESES).  Rett Syndrome was confirmed.  All her doctors (and she has many) were surprised with the results as she didn’t fit the ‘Rett girl’ profile.  She walked, she had some hand function and she wasn’t having seizures (though she does technically have epilepsy and has epileptic episodes which I’ve been told are NOT seizures).

Q: Who did you work with to get the Rett diagnosis?

The geneticist we worked with was Dr. Marion at Montefiore in the Bronx.  And what was especially great about being at Montefiore was that there is a Rett Clinic there (the only one in the tri-state area, led by Dr. Sasha Djukic) so we were already in the Montefiore system.  It also helped in terms of scheduling doctors appointments as the Rett clinic is open on Fridays and we now just go there once a year and see anywhere from 2 to 5 specialists in a day instead of going back and forth to the hospital to see all the different doctors.
Q: Where are you today?
A Rett diagnosis sucks.  But you learn to live with it.  And knowledge is most definitely power.  I know what I’m dealing with and I can better prepare myself and my child for the road ahead.  And by the way, it’s mostly a happy road we walk.
Q: Is she on a special diet?
Lily has been following the GAPS diet for the past two+ years (though she has pizza on Fridays at school) and is on the growth charts which I believe is because of the healthy foods and supplements she takes (many girls with Rett start to fall off the growth charts by the age of two).  She sees a nutritionist regularly.
Q: What types of therapies does she receive?
She goes to a private special needs preschool where she receives numerous therapies, and has an augmentive communication/speech generating device that she navigates with her eyes (think Stephen Hawkins).  It is called a Tobii.  Actually she has two Tobii’s – one at home (which we own and were able to procure through the EI program) and one at school (which took a year of advocating through the DOE CPSE program).
Here are the services she receives through the DOE, on a weekly basis:
At school:
  • 1:1 para professional for health and safety reasons (this is imperative: our girls cannot self defend)
  • 5×30 Speech Therapy
  • 4×30 Occupational Therapy
  • 4×30 Physical Therapy
At home (she has a ‘dual recommendation’, sometimes called an RSA, and is supposedly impossible to get through the DOE):
  • 6×60 SEIT (Special Education Itinerant Teacher)
  • 3×45 Speech
  • 3×45 OT
  • 1×45 PT
  • 4×60 Assistive technology services (so that the home speech therapist can program both Tobii’s and upload course curriculum to them so Lily can follow along in class and participate).
On the weekends she goes horseback riding through the GallopNYC program and is loving it.
Yes.  It is a lot of therapies.  And yes.  It was not an easy decision to put her in to all of these therapies.  But the proof is in the pudding:  My kid is thriving.
We live a mostly happy, and always busy life.  Yes.  It is possible.
Happy Girls, Halloween 2015

Happy Girls, Halloween 2015

Lily’s a featured angel on the Int’l Rett Syndrome Foundation site

She’s going to be 3 years old and has had 3 different diagnoses.  The last one (Rett Syndrome) combines the first two (autism and ESES, pre-epileptic activity) and adds a few more.  But regardless…. she’s still the best.  Ever.

We are heading to the hospital tomorrow and will be there for her birthday, but will celebrate it in style.  As always.

Check out her profile here:
https://www.rettsyndrome.org/news-and-media/irsf-features/featured-angel

And there is NO need for gifts or anything of the sort for her birthday.  If you feel so moved to do something, you can always make a donation (large or small) to the IRSF.  They’re amazing and have been so helpful for us these past two weeks.

https://www.rettsyndrome.org/make-a-difference/donate-now/donate

Love,
C and L

La-la-land vs. reality

Below are two posts/articles written by mothers of special needs kids.  The first one is quite popular and somewhat annoying, if not clawingly uplifting.  The second post is one which, once I read, felt like it was something I would have written.  It resonated with me that much.

  

WELCOME TO HOLLAND

c1987 by Emily Perl Kingsley.

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this……

When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”

And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss.

But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.

 

HOLLAND SCHMOLLAND

 

c2008 By Laura Krueger Crawford
.

If you have a child with autism, which I do, and if you troll the
 Internet for information, which I have done, you will come across a certain inspirational analogy. It goes like this: Imagine that you are planning a
trip to Italy. You read all the latest travel books, you consult with
 friends about what to pack, and you develop an elaborate itinerary for your
glorious trip. The day arrives. You board the plane and settle in with your
in-flight magazine, dreaming of trattorias, gondola rides and gelato.

However, when the plane lands you discover, much to your surprise, you are 
not in Italy — you are in Holland. You are greatly dismayed at this abrupt
and unexpected change in plans. You rant and rave to the travel agency, but 
it does no good. You are stuck. After a while, you tire of fighting and
 begin to look at what Holland has to offer. You notice the beautiful tulips, 
the kindly people in wooden shoes, the French fries and mayonnaise, and you
 think, “This isn’t exactly what I planned, but it’s not so bad. It s just
 different.” Having a child with autism is supposed to be like this — not
 any worse than having a typical child — just different.

When I read that, my son was almost three, completely non-verbal and 
was hitting me over a hundred times a day. While I appreciated the intention
 of the story, I couldn’t help but think, Are they kidding? We are not in
some peaceful countryside dotted with windmills. We are in a country under
 siege — dodging bombs, trying to board overloaded helicopters, bribing
 officials — all the while thinking, What happened to our beautiful life?

That was 5 years ago. My son is now 8 and though we have come to 
accept that he will always have autism, we no longer feel like citizens of a
battle torn nation. WITH the help of countless dedicated therapists and 
teachers, biological interventions, and an enormously supportive family, my
son has become a fun-loving, affectionate boy with many endearing qualities
and skills. In the process we’ve created well our own country, with its 
own unique traditions and customs.
 It s not a war zone, but it s still not Holland. Let’s call it
 Schmolland.

In Schmolland, it is perfectly customary to lick walls, rub cold
 pieces of metal across your mouth and line up all your toys end to end. You
 can show affection by giving a “pointy chin.” A “pointy chin ” is when you 
act like you are going to hug someone and just when you are really close,
 you jam your chin into the other person s shoulder. For the person giving 
the “pointy chin” this feels really good, for the receiver not so much, but
 you get used to it. For citizens of Schmolland, it is quite normal to repeat
 lines from videos to express emotion. If you are sad, you can look downcast 
and say “Oh Pongo.” When mad or anxious, you might shout, “Snow can’t stop
 me!” or “Duchess, kittens, come on!” Sometimes, “And now our feature
 presentation” says it all.

In Schmolland, there’s not a lot to do, so our
 citizens find amusement wherever they can. Bouncing on the couch for hours,
 methodically pulling feathers out of down pillows, and laughing hysterically 
in bed at 4:00am, are all traditional Schmutch pastimes.

The hard part about living in our country is dealing with people from
 other countries. We try to assimilate ourselves and mimic their customs, but
 we aren’t always successful. It s perfectly understandable that an 
8-year-old boy from Schmolland would steal a train from a toddler at the
Thomas the Tank Engine Train Table at Barnes and Noble. But this is clearly 
not understandable or acceptable in other countries, and so we must drag our 
8 year old out of the store kicking and screaming while all the customers 
look on with stark, pitying stares. But we ignore these looks and focus on
the exit sign because we are a proud people.

Where we live, it is not
 surprising when an 8-year-old boy reaches for the fleshy part of a woman’s
 upper torso and says, Do we touch boodoo? We simply say, “No we don’t
 touch boodoo” and go on about our business. It’s a bit more startling in
 other countries, however, and can cause all sorts of cross-cultural
 misunderstandings. And, though most foreigners can get a drop of water on
 their pants and still carry on, this is intolerable to certain citizens in
 Schmolland who insist that the pants must come off no matter where they are,
 and regardless of whether another pair of pants are present.

Other families who are affected by autism are familiar and comforting
 to us, yet are still separate entities. Together we make up a federation of
 countries, kind of like Scandinavia. Like a person from Denmark talking with
 a person from Norway, (or in our case someone from Schmenmark talking with
 someone from Schmorway), we share enough similarities in our language and
 customs to understand each other, but conversations inevitably highlight the 
diversity of our traditions. Oh your child is a runner? Mine won’t go to
the bathroom without asking permission. “My child eats paper. Yesterday he
 ate a whole video box.” “My daughter only eats 4 foods, all of them white.”
”My son wants to blow on everyone.” “My son can’t stand to hear the word no.
 We can’t use any negatives at all in our house.” “We finally had to lock up
t he VCR because my son was obsessed with the rewind button.”

There is one thing we all agree on: we are a growing population.

10 years ago, 1 in 10,000 children had autism.

Today the rate is approximately 1 in 250.
(CS update: As of 2013, the rate became 1 in 55 children in the US.  No joke.)

Something is dreadfully wrong. Though the causes of the increase are
 still being hotly debated, a number of parents and professionals believe 
genetic pre-disposition has collided with too many environment insults –
toxins, chemicals, anti-biotics, vaccines — to create immunological chaos 
in the nervous systems of developing children. One medical journalist
speculated that these children are like the proverbial canary in the coal
mine here to alert us to the growing dangers in our environment. While this
 is certainly not a view shared by all in the autism community, it feels true 
to me.

I hope that researchers discover the magic bullet we all so
 desperately crave. And I will never stop investigating new treatments and 
therapies that might help my son. But more and more my priorities are 
shifting from what could be to what is. I look around at this country my
 family has created, with all its unique customs, and it feels like home. For 
us, any time spent “nation-building” is time well spent.