Yo soy La Lay

adventures in family, faith, and Down syndrome

Dear EI Team

Dear Karen, Karli, Lori, Suzanne, and Beth,

And also Kim, Rachel, Joan, Shannon, and Kate,

And Sue,

Look at you all!!  We have been so blessed with not just one, but two amazing Early Intervetion teams.  I had been so terrified to leave our old home because it would mean a new CFC and a new team of therapists.  We had an amazing team, who Tessa mostly liked, or at least tolerated, and some of the moms can be so negative about their experiences with therapists (and rightfully so).  So we when we moved, I was nervous that we couldn’t possibly hit the jackpot twice.

We did!

You all have been such a positive influence on Tessa and our family. You give great suggestions for modifications that make her path more accessible.  You help us help her and made it so easy to get the equipment that she needs.  But what has been the most influential is that way that each of you has talked to us about her and her unique strengths and challenges.  It’s never about kids with Down syndrome, it’s just about Tessa.

Too often, I hear moms distraught by the delays that their child is experiencing.  They lament the IFSP meetings where the therapists rattle off all of the things that the child isn’t doing.  None of you has ever done that to us.  We aren’t unrealistic; we know that she is delayed.  All of you have helped us navigate those feelings and accept that her timing is all that matters.

As we head off to school in a few short weeks, I’m again fearful of leaving the safety net of our EI team.  As you all keep telling me, she is ready for school, and she is going to love it.  But without your home visits and your detailed reports, and your suggestions for what we can do at home, I’m so nervous!  Her preschool teachers sure have big shoes to fill.

Thank you so much for what you do. You are overworked and underpaid, but so so loved.

All the best,

Tessa’s Mom

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Dear Kim and Karli

Dear Kim and Karli,

This afternoon, when we attempted to get Tessa to walk across the room, she turned to John and said “No Daddy, stop it.” Clear as a bell.  I’m sure I’m supposed to be annoyed by this, but I bet you can guess that we just burst out laughing because it was a speech victory in our minds!

Later, Little Miss Carnivore asked us to take away her half-eaten brownie and for us to give her more broccoli.  We worked for so long on getting her to eat a real fruit or vegetable and look at her now, preferring the broccoli!  

We owe so much of what she can do to the two of you.  She has come so far… from that little lump of a baby who took an hour to drink a bottle while laying on her side to now happily joining in our full family mealtime, veggies and all.  She is going to start preschool with lots of words and signs to communicate her needs.  And she’s going to rock it!

Neither one of you have ever used the word “can’t,” nor have you ever predicted anything about her based on Down syndrome.  You have never told us that she just does something because of her diagnosis.  You have treated her as Tessa, a little girl with as much potential as anyone else.

We are so blessed to have worked with both of you.  Thanks for giving us so many tools to help our girl, and for being so supportive of our family.  I know that Tessa put you both through the ringer sometimes… especially you, Karli, once we put “persistence through non-preferred tasks” into her ISFP.  LOL!  I know she can be quite the character during her sessions. You both have just been lovely to spend time with.  The new littles that you work with are so lucky to have you.

Thanks so much for everything,

Maggie

Normal (messy) family meal time….

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These boots are made for… crawling.

In case you were wondering, no, Tessa is still not walking.  I don’t expect her to in the near future.  In fact, I’m not sure that a human being exists on this planet that is less motivated to walk than she is.

No, really.

She can stand.  I’ve seen her do it. And she can travel across the room on her feet with very minimal support from an adult.  When she wants.

If she wants.

I’m not fretting about this at all, actually.  Quite the contrary.  Cool as a cucumber over here.  No, this is not sarcasm.  I know, I know, this is not what one might typically expect, given my attitude in previous posts.  One year ago, I was impatient.  I will still working on being “ok” with our own pace.

(In this moment, the fact that I was working on it is almost laughable.  I can’t figure out why, but right now, not being “ok” with a slower pace seems silly.)

In any case, we have put all the supports in place that she might benefit from.  Weekly therapy (which again, is not to speed progress, but to ensure that skills are developed correctly), Spio compression suit and pants, orthotic braces for her legs/feet, the most expensive pair of shoes I have ever purchased (they were 50 bucks… I’m cheap)…. Getting Tessa dressed in the morning burns as many calories as a session with Jillian Michaels.

But I digress.

She will walk, I am sure.  She just needs to find the right motivation.

As a side note, we met with our new pediatrician for the first time yesterday.  The appointment was great… Except when she asked about Tessa walking.  I literally had to bite my lip to keep from laughing when she suggested we try “putting some things in higher places so she has to work to get them.”  No shit.

The good thing is that Little Miss is indeed quite little, still under 22 pounds.  And, she is also quite cute.  Just look at how she charms her way out of walking with her Mimi today:

  

Girlfriend will get there when she gets there.  For now, I’ll just be thankful for the extra arm workout I get from hauling her around. After all, if she walks even half as fast as she crawls, we are in trouble.

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Advocacy #29: Support Early Intervention

Early Intervention is not a new topic here.  The number of posts tagged “Early Intervention” takes up three full pages on this site.  Right now, funding for EI is on the chopping block in Illinois.  We have a budget problem for a lot of reasons and every cranky person in the state has an explanation (some real, some not) and a solution (some constitutional and some not) and while the rest of the world has the benefit of just being able to complain about it without having their worlds turned upside down, my family does not have that luxury.  More on that tomorrow.  Today, some background on EI.

Early Intervention started in 1986.  It provides therapy services for children ages birth to three that show some developmental delays, be they physical, social, emotional, or cognitive.

EI is partially funded by the state, partially through federal funds, and families pay a monthly fee on a sliding scale based on income.

States can decide how to set up their EI programs within some federal guidelines.  Right now in Illinois, a child has to display a 30% delay to qualify.  It is estimated that about about 13% of children qualify for services, but only 20,000 kids are getting services right now (about 3.5%).

Each child develops an Individual Family Service Plan (IFSP) and goals to help the child function in their environment.  Goals are reviewed every six months.  Services (therapies) are scheduled based on what the goals for each child are.  Therapists come to the home to provide these services.

It is estimated that about 50% of children who enter EI as children are able to be remediated in their skills to the point where they do not need Special Education services when they enter the public school system.  Those who are not completely remediated still make significant gains.  And the earlier we start, the farther they go.

Early Intervention is crucial.

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Get ready… get set…

Last Wednesday at 8:30 pm, well past my bedtime, I found myself sitting at the kitchen table, hastily drawing on posters and t-shirts for a rally to preserve Early Intervention funding in Illinois.

“Mag,” John quipped from across the room, “you were born to be an advocate.  You just needed a cause.”

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Before I had Tessa, if asked what my hobbies were, I had no answer.  I’m not boring (I don’t think), just never had something that totally captured my interest.  Now, I have Down syndrome and special needs advocacy.  It’s an odd thing to qualify as a hobby, I suppose.  It’s not something that I do for fun necessarily.  In a way though, it’s something that I do because it feels productive and important and that is fun in my mind.

I recognize, of course, that this brand of advocacy is not for everyone.  Heaven knows that I’ve had enough conversations with enough people to know that some find us to be “takers, not makers” and unworthy of such silly requests as funding for basic therapies and a place in the classroom.

Ugh.  We’ll be addressing this later.

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In any case, all of this is important because tomorrow, October 1st, marks the beginning of Down Syndrome Awareness Month and the 31 for 21 Challenge.  Last year, we wrote about 31 things that we have learned since we had Tessa.  This year, we’re sharing 31 mostly simple ways that you can advocate for people with Down syndrome (or people with special needs in general).  I would never presume to tell you that just because this is my cause that it has to be yours, too.  But, if you should want to make a small difference in the lives of people like Tessa, in honor of this month or just because you want to, we are excited to share some ways to make a difference.

Thanks for joining us.

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To hear our radio interview at the Early Intervention rally last week… click here:  http://wuis.org/post/funding-worries-persist-parents-disabled-children 

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Helpless, hopeless

To sit and watch babies lose their Early Intervention therapies left and right is gutwrenchingly painful.

Do you hear me???!!?!

I cannot understand what our state has come to.  I cannot understand a world in which we cast aside those who need us the most, to be nothing but a political pawn in a game of war that we can only lose.

This is not a liberal or conservative issue.  It is about human rights.

I am well aware that a somewhat vocal minority believe that it has been my choice to have a child with special needs.  You could have aborted her, they say.  (Yes, they literally say that)  And then there would be no expense for therapy.  There would be no expense, no argument for Early Intervention.  She’s just an expense.  Not a human being.  There are people who cast us aside and feel that we are owed nothing because we can contribute nothing.

We are owed nothing.  I understand this.  But we contribute.

What world do we live in that civilized human beings will shun needy children?  What world do we live in that politicians continue to push down on the disabled and the hurt and the suffering and play with the very real power that they have to devastate an entire population?  What is going on with a world where not getting a lottery payout is national news, but thousands of children being abandoned is not even covered somewhere on page 12??

Family and friends shake their heads from afar… Oh, that’s a pity they say.  I’m so sorry to hear this, those (fill in derogatory term) politicians…  They get mad, and move on in their day…. We cannot.  We live waiting for the letter that terminates services.  We watch our dear friends lose their lifelines.  And it hurts us to know that we are alone in this battle.

Do something.

I implore you.

Don’t tell me that this is just temporary or that it’s just a publicity stunt.

Make a phone call.

Don’t tell me that money has to be cut somewhere, so just deal with it.

WE ARE TALKING ABOUT BABIES HERE.

Babies.  We are talking about babies.

Make a call.

#INEEDEI  

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18 months

Ok, that’s enough cranky already.  Yes, The Big Move is daunting.  Yes, spring time has brought mass chaos.  Yes, my patience has been tried beyond its usual limits.  But let’s be realistic.  We’ve made so much progress that really, amidst all the chaos, there is still so much joy.

I don’t even remember the last time I shared a family update.  As this outlet is generally meant to be that – a place for updates – I’ve certainly dropped the ball.  So here you have it:

John and I are making our way, slowly but surely, to the end of another school year.  We both took on leadership roles in our buildings this year and while challenging and new and definitely an adjustment for me, the year has been revitalizing.  And we had a really great time together at a family wedding recently!

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However, we are rather boring.

The children though… oh, the children.  They are, as I tell anyone who asks, wild and crazy.

Seemingly overnight, Ellie went from scribbling haphazardly all over coloring books to this:

Mike Wazowski from Monster’s Inc, drawn from memory

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Our family (there was “no room” for Daddy)

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A tree (clearly, I hope)IMG_8104I hear that those are pretty good for a three-and-a-half year old (though she is now getting much closer to FOUR than I care to admit).  We have some artists in our family (especially my mother in law) so I’m sure that she could have some artistic talent.  I’m not sending these off to the Louvre quite yet, but hey, if the kid can draw, that’d be pretty cool.

Ellie was also in the wedding that I mentioned above.  She was the sweetest cutest little flower girl.  Did she fall asleep in the salon chair?  Yes, she did. Did she cry going down the aisle?  Yes, she did.  But did she look lovely during the whole shebang?  Yes, quite lovely.

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Tessa, while still very much a baby in a lot of ways, has catapulted herself toward toddlerhood.

We recently had some tests done on her eyesight and hearing, both of which have come back without concern.  While her SLP (speech therapist) was concerned that she might not be hearing everything that she should, we know that she has an ear tube that is working its way out of her ear (as they usually do after 12-18 months) and it is partially blocking some of her hearing in one ear.

Tessa loves (LOVES.) to babble.  Usually, her intonation makes it sound like she is speaking in long sentences of gibberish.  There is a lot of emotion in her statements.  We get a good laugh out of the angry Tessa, as we are quite sure that if she had words, they would be quite unkind when she’s upset.  We have been working more on signing with her.  Ellie loves signing and always asks how to say various words in sign.  Tessa has just a couple signs – more, eat, daddy, and play (what more do you really need??).  We are working on bedtime, please, thank you, drink, potty, Mommy, Ellie (we use the sign for E, but shake it like play), shoes, and of course, NO!!!

Very often, I have moments where I think “wow, she is absolutely nothing like an 18-month-old.”  And then sometimes, she does things like this…..

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…. and I’m reminded how she’s not entirely different from her typical peers.  That cabinet had been closed, by the way.

Tessa crawls like a champ.  MAN is she fast!!  One of her favorite things to do is to hold a block or other object in her hand and race across our new laminate floors.  She LOVES the loud bang bang bang of her little hands as she moves.  We are working on getting her to bear weight on her feet.  She fights it most of the time, but today, when John was giving Ellie her bath, Tessa was so desperate to see what was happening in the tub that she pulled herself right up to her feet.  SO exciting!!!  We have her wearing a SPIO suit on a fairly regular basis (supposed to be every day… realistically, it’s like 2-3 days a week) to give her more body awareness and support.

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What I love the most about her right now is the budding personality.  So far, Tessa is a little shy, but sweet as pie.  She just loves to smile and laugh.  While she is usually contended to roam around the house exploring, nothing makes her happier than to have the full attention of one of us or, most especially, her sister.

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Did I mention that she gives kisses now?  Or that she got her first haircut?  Or that she can eat real table food?  And she kind of drinks from a straw??  Have I shared that we finally moved up to 12 month clothes?  Or that turning the pages on books makes her squeal with delight?

We’ve been busy.

In two weeks, school will be out for the summer… ok, three if you count my extended days.  I can promise more updating as we take our deep summer breath.  Get excited.  Summer is going to be here before we know it!

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My political rant continued.

“Don’t worry,” they tell me. “Tessa has Down syndrome, which is an automatic qualifier. Her services aren’t affected by these changes.”

That is a dangerous line of thought. And it’s SO not the point.

As I shared earlier – this is not just about her. She is one face in the world of disability, but she is not the only face. It’s about taking care of families, taking care of children.

The reality is that there are many, many children who do not have “automatically qualifying diagnoses.” The laundry list of delays that I laid out earlier could be any child, anywhere, with or without Down syndrome. And a choice to leave them to fend for themselves is cruel. It’s inappropriate. It has long term consequences that we cannot even begin to understand.

Once we begin to remove supports for individuals with disabilities, we limit their potential. Once we have told them that they aren’t worth our resources and efforts, we take a step backward in our development as a society. We devalue an entire population.

I won’t stand for it. And I won’t change my message. This has to be stopped.

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A political rant – and I’m not apologizing.

I now live in a state where the governor believes that providing Early Intervention services for infants and toddlers who are less than 50% delayed is “financial recklessness.”

Early Intervention has been my lifeline, my saving grace, my hope that if we can get her started on the right path, she can accomplish her dreams. And though the path will be challenging, there has been support and structure and light for our journey.

However, my child is not more than 50% delayed.

In the proposed budget, presented today by our newly elected governor, my child would lose her therapy services.

My child, who has just mastered crawling on hands and knees while her peers are starting to walk.

My child, who has just barely begun to sip from a straw while her peers are long off the bottle.

My child, who is miles from any words, while her peers have begun saying Mama and Daddy and other first words for weeks.

My child, who ate pudding on her first birthday because she cannot manage solids while her peers fed themselves their own birthday cake.

My child, who has come so far and has worked tirelessly for every. single. milestone.

I literally feel as though I am going to throw up.

Life is not fair. I have never expected it to be. But I’m angry. Livid. Because this isn’t just about me and my family – it is about society and values and about being a human being.

I want out. Out of this state. I want to throw a tantrum and yell and kick and scream. And then I want to strap Tessa in her car seat and drive on over to the governor’s mansion and interrupt his lovely dinner to ask him a few direct questions. When did we decide that it is just fine not to take care of our own?? When did we decide that it is dandy to cut from our most vulnerable of citizens who live in families (like mine) that otherwise cannot afford to provide them with the therapy services that they need?? Why is that okay with ANYBODY??

My direct statement to my family and friends who voted this man into office (because I know you are many) – is that I am begging and pleading for your support in fighting this proposal. It is not what is best for our children. It is not what is best for our state. You elected him into office and he is now dismantling every support that my family relies on – I urge you, please contact your representatives and ask them to fight these changes to Early Intervention. This cannot move forward.

End rant. For now.

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Life, lately

It’s been difficult for me to sit down and write these days. Not for lack of words, I assure you, but simply for an odd restlessness that had settled into my brain. (Hello, 3 am wake ups, can we be done now?)  We’ve had a lot of serious discussion happening in our home about our future and those talks have mostly drained my ability to look at computer screen and write it out.

I realize as I re-read what I just wrote that I sound terribly melancholy. Rest assured, I am not. As a matter of fact, especially this weekend, I have had a rush of peace with the whole idea of our new family adventure. We’re moving forward.  It’s all good.

Very quickly After, we knew the time would come that we would have to move.  For more reasons than I could possibly go into (not the least of which being the cramped quarters of a home we meant to move out of 3 years ago), it’s time now.  And because of the fabulous fact that we bought our house at the second-worst possible time in recent history, our move is going to involve a stint living at home with Momma and Daddy Dub.

I didn’t expect to spend the summer of my 30th birthday moving back in with my mom and dad.  Then again, I didn’t expect a lot of the twists and turns that I’ve taken in life, so we’re rolling with it.  We don’t necessarily have a timeline for selling our current place, which is nice because there isn’t much of a rush to pack it up.  We’ve started, but it’s not all-consuming.  True to my usual manner of business, I’ve got a few spreadsheets rolling to organize us.  No major task in our family is complete with out some help from Microsoft Excel!!

The kids are thriving lately.  Tessa’s annual meeting went really well.  The therapists have been really impressed with her progress and I was able to push for a specific goal that I think will target her communication skills.  We (very necessarily) have focused a lot on eating in the first year.  Now that she’s sitting, beginning to sign (yay!) and beginning to have more feelings and needs, I’m looking forward to working more on communication during our sessions.  We will continue to have OT, PT, Speech, and Developmental therapy each one time a week.  She’ll start wearing a Spio suit soon, which looks kinda like the clothes you wear for scuba diving if you ask me (though it is sleeveless and shorts, not pants).  You should know that we don’t live in a constant state of therapy in our house – that really, truly, most of Tessa’s “therapy” comes from trying to get the toys back that Ellie steals from her.

Just before we had our meeting, I ran across a quote on the National Down Syndrome Society‘s website that was a lightbulb moment for me. On the surface, I knew this, but the words struck me in such a way that I had a productive shift in mindset.  It reads:

The goal of physical therapy for these children is not to accelerate the rate of their development, as is often presumed, but to facilitate the development of optimal movement patterns. This means that over the long term, you want to help the child develop good posture, proper foot alignment, an efficient walking pattern, and a good physical foundation for exercise throughout life.

Ok, duh.  I know this.  But, for whatever reason, the statement that Tessa is 48% delayed in her locomotion (moving) skills hasn’t phased me simply because of this.  Because suddenly, the delay isn’t about me not putting her hip helpers on her for three days in a row.  She should wear them, yes, but it’s not about me holding her back, but more about teaching her to do it correctly.  Weird how things can strike you like that.

I look forward to telling you about my older child’s awesome development soon… at a time when she isn’t hanging off of my arm crying that I put too much milk in her cup.  Ah life… I wouldn’t have it any other way.

A picture of Ellie at hour 10 of an 11-hour Road Trip, just because.  She was 13 months at the time of this picture (same age as Tessa today).

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