Open Letter to My Daughter's Support System

Tis the season where you shop for your family and your kids' friends and your kids' teachers....and so on and so forth.

I will, without a doubt, post again about the holidays, but today's shout goes out to the host of people that brings me zipped coats and intelligible words.

I have to buy gifts for the people who I live with.  I have to buy for family members who are hard to buy for.  I have to buy for people who expect presents, but are not happy with anything.  I get to buy for people who are easy, and I get to buy for people who are excited for anything...but those are mixed in with obligation gifts.  And just because someone is easy or hard to buy for, in no way illustrates who I love deeply...

The list of people that I LOVE to buy for is short. 

The list of people that I would LOVE to buy for is ridiculously long.

And every year I am faced with squeezing the budget for that last category. 

But I want to take this moment to say to my daughter's teachers, aides, and therapists:

I wish I could buy each and every one of you a loaded gift card for Target or Staples, a trip to the spa for a massage, luxurious goodies, and a trip to Hawaii.

The work that you put in over YEARS of fighting for the same thing for my kid, is not unnoticed.  That we have been working and crying together for tied shoes and zipped coats and clearly written alphabet and spoken pronouns for 10 years...well, we are sisters and brothers-in-arms.  You know better even than most of my family how HARD it's been crawling up canyon walls to get to heinously behind, wrestling our way up from static and stalled.

You have been the backbone to Elise's scholastic achievement and her social successes.  I don't lay down on the job, but I also know I can't do it alone.  I know some tricks, but you know many more, and are continuously learning for MY KID.  You learn the hard way how 6-50 kids react in stressful situations.  You take even physical abuse protecting my child from herself.  You go home every night, trying to figure out what else MIGHT work for 10 kids...and you make mine feel like she is your most beloved.  You reach out to me when I cry at IEP meetings, crying with me and offering me comfort.

If I sat on Santa's lap right now, I would wish that every single time you opened your desk drawer, you would discover just exactly what you needed.

I will have to content myself with gifts that actually depress me to give you....in desperation that you feel how much I value you.

Because this year for Christmas, you gave me a kid who could talk on the phone with me and make sense, and, despite warning me that she may never be able to zip her own jacket zippers two years ago, she has done so, BY HERSELF this month, for the first time.  I have gotten more weepy about that than my son applying to colleges (shhhh, don't tell him).

Thank you.  You are the very best sort of elves.  You work magic with my girl and you do it with creativity and the most amazing ethic.  And, frankly, you don't get paid nearly enough for all the magic beans you plant in our lives.

How We Get Early Intervention Wrong

This post is not isolated to Down Syndrome at all.  It is a blanket conversation about all Early Intervention programs.

Now.  Let me start out by saying that I think Early Intervention therapies are stellar.  I believe that they prevent a lot of frustration and more involved therapies in the future.  I furthermore believe that in many cases, helping kids to cope with their unique challenges before they are crippling is imperative.  This is especially the case with social, sensory, and communication challenges and particularly for kids on the spectrum. 

I had Elise involved with every early intervention program I could from the time she was 1-2 months.  You see, as a teacher, I read nothing but good things about the programs and was an enthusiastic believer in "The Einstein Syndrome".  (The theory that if you assumed that your child was a genius, and treated them with high expectations and offered stimulation, they would rise to the expectations.)  Since then, I have realized that positive expectations are indeed important, but there are many, many factors that combine to explain every child's personal development levels.

The first problem with Early Intervention is that many parents go into it believing that if they don't miss a therapy appointment, their child will be "fixed" and that all of their struggles with be eliminated if the parent is Doing All The Right Things.  This is not a real formula.  There are so very many factors that go into your child's development, that you cannot possibly guarantee anything based on regular therapy attendance.  It's just ridiculous.

The second problem is that you can forget to play and allow memories to be made.  If you think that regular therapy attendance is the official Key to your child's adult potential, then taking off a day for emotional well-being is simply not an option.  And God forbid you take a summer off and play in the grass and the pool.  And do you know how exhausted that makes you?  Much less your child?  Much less your child's siblings?  Toys are just for playing sometimes, not always "neurological stimulation".

The third problem is that they are only made to mediate problems.  They cannot "fix" everything.  They cannot combat physiology.  They cannot combat medical problems.  They cannot entirely rewire the brain.  They only promise to offer strategies to make things easier in the world not made for them.

The fourth problem, and the most important, as I see it, is that we are trying to jam a child into a mold.  If you are paying attention only to the first and second issues I put out, then I think you may have missed the point of the therapies that your kid qualifies for.  The therapies are tools to reduce distress and anxiety and give them the ability to communicate their feelings and ideas with the world.  If you are trying to "fix" your child so that they can look, act, and sound like everybody else, then you will miss out on the best present your child can give the world.  A fresh perspective.  Dyslexics, kids on the wide spectrum, kids with ADHD, kids with Down Syndrome, gifted kids, kids with learning disabilities, kids with physical disabilities, they ALL have a unique view of the world....therapies are only the manner to give them freedom and a voice.  That's all.  Stop trying to squash their voice into a neat box, their view can offer more than you ever comprehended.  Accept and enjoy it.

And if you have to take the summer off from therapies to reset and hear that voice? 

Do it.

Kindle-ing the Flame

We are still working on the "talk box"...the learning curve is steeper than I anticipated...

The funny thing is that it happened just as I suspected.  We ordered the Accent about 1 month before a verbal boom.  You know, when ALL the speech therapy of the last 4 years fell into place and she started talking like a house afire.  Well...for her...

I was not in love with the speech therapist from the 2 school years previous to this one.  I mean, I didn't hate her, and Elise liked her, and she did her job.  But she really pushed sight words and school and reading, with led to a sight words boom. But this focus also led to debilitating stuttering and a complete stall in social words.  Such that last summer I engaged a speech therapist outside the school system, for the exclusive goal of eating and socializing.  She was lovely and near by, but she was also scheduled quite full and we were worked in once a week.  So, when the therapy center than Elise gets hippo therapy (horse occupational therapy) engaged an extra speech therapist, I was in. 

Also, at the beginning of the school year, we were thrilled to discover that her new speech therapist at school was one of our very favorites from back in "Babies Can't Wait" days (Early Intervention, pre 3 years program).  And Elise has loved having her again.

Between Kathleen and Pam, Elise speech has completely exploded thanks to support and the brilliance of these ladies.  They are the kind of speech therapists that talk to the kids, ask about their likes, and then they utilize the snot out of those interests...I love them.  Even if their last names make me giggle like a tweeny-bopper...because they are like textbook words on HARD TO SAY.  Which, is ironic for a speech therapist, if you ask me...

Although Pam and Kathleen have been beyond amazing, and Elise has really started to sound clearer, she still is low on the speech realm.  And the talk box would be really excellent for chatting with those that don't know her...but Elise has gotten all pompous because people are understanding more...especially her conversation starters...and so she doesn't want to use the box, because she doesn't need it for the conversation starters...and so she is not practicing the beginning stuff, and wants it for the harder stuff, but because she doesn't use it for the beginning stuff, the more advanced stuff is almost impossible to find, which makes her frustrated, which makes her not want to use the box...and the circle continues.  I should have gone over the school's head years ago.

My intervention has gone to "school time" in the mornings.  Where we read and color and write.  And now practice our talk box.  Hopefully, this will get better.

"School Time" was inadvertently invented, because Elise was sad that she couldn't go to school and was taking that frustration out on her sisters.  So, now we are somewhat scheduling our day, so expectations protect us from meltdowns.  If you know me, you know I don't love that...but, it's better than the alternative...so....

The funny out-growth of this new speech boom is that Elise has now become Vanna White to sell me on the apps she wants to buy. 

Elise got a Kindle for a conglomerate (all gift cash going toward one item!) birthday present last year.  And then I put it in a super safe place.  And it's still there.  And I can't find it.  And it's still there, with my iPod...yay.  So, for for this last Christmas conglomerate, she got a new Kindle.  I figured that would make the safe one turn up immediately..unfortunately, not this time.

ANYWAY, the Kindle has the unfortunate banner at the bottom of the screen of "other customers who bought this app, also bought..."  And Elise spends massive amounts of her days trying to talk me into new apps.  AND SHE NEVER FLIPPING GIVES UP.  She has persistence in SPADES, People.  And this is in the face of the rest of my kids, uh, none of them are exactly mellow push-overs.

(* If you really want to make me happy, please feel free to call Amazon Kindle's Customer service at (206) 922-0866  and beg them to take that banner off.  They listened to all the begging and installed Parental Controls which were not originally on the Kindles.  So, they really do listen!!)

I will say, for the record, that the Kindle is massively sturdy, and has some amazingly great apps, free and for sale...I love it.  Now, if it had been able to download some of the really great speech device apps, we would never have come to the Accent debacle...I really wish that the companies making the special needs apps would acknowledge that the Kindle is a much more reasonable option, and make them in Android versions, too.

But until such a time as the banner is removed, Elise is all about using her new speech to tell me all the lovely things about the apps she wants, telling me what all you can do in it, what different characters can be chosen, and why she totally NEEDS it. 

Which is why she has about 6 cooking apps, 3 hair cutting apps, and 5 coloring apps.  They were free.  I succumb to the duplicate apps, not because I really feel like she needs them, but because I am sooooo proud of the vocal sell...and that deserves a little reward.  The only one I regret was a shark app that didn't look terribly violent, but it has unfortunate sound effects.  SO!  But, if it takes wanting an app to really jumpstart the verbal confidence, so be it.

Christmas Shopping??

Dolls for Downs

 

You have no idea how excited I am for these dolls!!! I loved Downi Creations, but they went out of business years ago...and no other doll line has attempted to bring the beauty to the "typical" features of Down Syndrome to a doll.  Don't get me wrong, there are dolls out there with Down Syndrome...but frankly, they are creepy and hurt my feelings.  There is no way in this world would I give them to my daughter and tell her, "Here, these look like you".  This company has not only brought the beauty back, but it was brought not a toddler doll, but to dolls that represent the age and culture of our kids when they truly realize they are different. My heart was so full last night that I couldn't write.  But I simply MUST showcase these lovelies!!

 

I "found" these dolls thanks to my dear bloggy friend, Anna, the Chunky Chicken's mama, yesterday.  I also confess that one has already been ordered for Elise.  I now have to wait until it comes AND then I have to wait until I have a good excuse to give it to her. 

 

 

 

To try and narrow down one reason I am so excited about these dolls is laughable.  There are both girl and boy options.  They've made them so practical!  They will be bathe-able and they deliberately chose wigs that should stand up to vigorous "care". They've even managed to plan self-help/fine motor skills into their wardrobes...! I could absolutely gush compliments without end. 

 

I even find myself considering that maybe her sisters need one of their own to be friends with their American Girl dolls...promoting the beauty and differences that their sister has.

 

ANYWAY, PLEASE check out these fantastic dolls.  If you are on Facebook, you can watch their progress.  https://www.facebook.com/#!/DollsforDowns?fref=ts

 

And please share the "love" and tell others!!

(Oh, and in case you think I have an agenda?  I got bupkis for this "commercial", I don't know them, and it's just me spontaneously gushing!)

31 for 21: Better Than It Looks: Toys

Last night's/This morning's post also brought to mind another "we have it better than the Typs" post...

Toys are a long term investment. 

They are therapy, for fine motor, gross motor, speech, and sensory.  They provide input and help us put forth social mores.  With toys we can probe their understandings and allow practice for proper interaction.  We can learn more about their problem areas, we can learn more of their fears.  We can reinforce the behaviors we desire to see more of and discourage those we don't.  Some of us take it even further than most and make PECS (Picture Exchange Communications Systems) of varying degrees, social examples, and more.

Because their developmental levels tend to stay in holding patterns for longer, the toys don't tend to pass from interest as quickly.  I'll grant you, that there is usually a longer learning curve, that we end up having to teach PLAY, itself, but once learned, that toy stays in rotation for longer.

Elise, in particular, tends to fixate on social interactions on movies.  To exclusion of toys, sometimes.  But this birthday, I tried to offer toys suggestions and movies, in balance, to those asking for gift ideas...and I am thrilled to tell you, that the toys were the first things to be ripped from their packaging this year.  Not so, previously.

She still prefers matching/thematic toys that can be sorted and made into "families" that "match".  But the plastic families of dinosaurs are trying out more social interchanges without my input.  I know it sounds funny that I have had to teach this to an almost ten year old, but it has been a long road of significant effort.

SO.  Toys are important at my house and valued for their examples...I bet you just curse them for being sucked up in the vacuum, doncha?  :)

Thankful That We Are Not Alone : Penny's Take on a New Therapy

Penny is a new friend as well. A treasure discovered in the wide, wide world of Facebook. She has an adorable munchkin, Wyatt, with Downs and some sensory stuff, who stars alongside his brothers in her blog, Penny's Peeps. 

She offered this spectacular follow up about Therapeutic Listening. I have not ever heard of this before, but let me tell you, after this post I will be looking into it for Elise!! Can I get a HOORAH for new weapons in the sensory arsenal???  :)

 a major component of wyatt's sensory therapy has been "THERAPEUTIC LISTENING."  "Therapeutic Listening" is defined as "an auditory intervention that uses the organized sound patterns inherent in music to impact all levels of the nervous system.  Trained therapists learn to use modulated CDs to set up programs for clients in homes, schools and clinics."  (Vital Links)  

many experts believe that the auditory system is a critical link in sensory integration (which is the ability to organize sensory input from the body and the envirnment and to incorporate it adaptively in meaningful occupations).  the vestibular and cochlear systems function similarly with "hair-like receptors moving in a fluid filled canal" as one system.  "therapeutic listening" provides direct input to this system through various musical styles, types of filtering, and level of complexity!  the music is actually "electronically altered to elicit the orienting response which sets up the body for sustained attention and active listening."  (Vital Links)

so how does this all work?  wyatt wears specially designed and "weighted" headphones to listen to cd's for varying lengths of time.  the process involves building up the time spent listening. he had worked up to 30 minutes on the first cd before switching to the second cd in the series this week.  his therapist sits with him, usually on one of their therapeutic swings, gently swinging back and forth.  this gives additional vestibular input as he listens.   this week he also crawled around and played while listening. 

and what outcomes might be anticipated from this therapy?  "Therapeutic Listening coupled with SI (sensory integration) tends to speed the emergence of:

• attention
• organized behavior
• self regulation
•  postural control
• bilateral coordination
•  praxis
• fine motor control
• oral motor/articulation
• social skills
• communication
• visual motor integration"   (Vital Links)

what have we seen with wyatt?  we have seen a HUGE improvement in his ability to focus on tasks in therapy!   we have also seen improvement in his social skills (not hitting his friends as much).  his postural control is better, he is showing improvement in both gross motor and fine motor skills, and he is jabbering away with varying inflections ALL.THE.TIME now!  these are just a few of the changes we have seen! 

"Therapeutic Listening" was created and developed by occupational therapist sheila m. frick, who also founded vitals links.  her organization provides the materials used as well as training in the system to clinicians.  another component of therapeutic listening is the "astronaut training program: a sound activated vestibular-visual protocol."  although wyatt's therapists have invested in this program, they decided that he is too young for the movements that the program involves.  but if you have an older child, you might look into this program as well! 

www.pennyspeeps.blogspot.com