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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A No Laughing Matter

Have you missed us??

We are back – and tonight, bringing an important public service announcement.

Let’s start with this: I laugh loudly, and a lot.  It’s genetic, really.

It’s unfortunate that with her extra chromosomal material, Tessa didn’t pick up that loud laugh… It would be built-in therapy.

We’ve brought this up before, how Tessa bursts into tears at the sound of adult laughter.  It’s been on my mind recently because we have a family trip to Kentucky coming up and like I said, the laughing loud thing?  It’s genetic.

It’s kind of a troubling issue you see, because we are all laughers and boy, does a crying child dampen the mood.

Now that I have tripled my commute time each day, I have lots of time to think.  Nothing particularly earth shattering has come out of this deep thought, believe me.  Mostly I just wrestle with whether I should stop to quench my undying sweet tooth after a long day at work (hellooooo Oreo Coolata).  But I digress.  I’ve actually been thinking some about the laughing.  I’m not Tessa’s therapist, but I know my girl, and I want to share some ways that you, dear family and friends, can help us help Tessa.

1. Tessa is learning to live in a world where there are adults who laugh and screaming toddlers and the whole gamut of unsettling noises.  Do not censor yourself.  We need her to learn to deal with her emotions.  She will, in time.  The last thing anyone wants is to see all the fun go down the toilet!

Remember this?  

2.  It really helps if, after you laugh, you avoid eye contact. You may think I’m crazy, but how many time have you seen a kid fall down and not actually cry until an adult gives that ‘look’?

3.  Never, ever (EVER) feel bad about her crying when you laugh. It’s not you, it’s her. And that’s ok. It’s ok for her to have this issue and it’s ok for you to laugh. And to be honest, when you feel bad, we feel bad and uncomfortable and it just makes everything feel a lot worse than it needs to. So even if you do feel bad, just pretend that you don’t.

4. Did I mention the “no eye contact” thing?  It seems to help with #3.

5. Know that as her parents, John and I have got this.  Sometimes people like to help by making suggestions, or trying to problem solve, or commiserating, but it can be exhausting.  Between her therapists and our support groups, we’ve got the tools that we need to help her process.  We need time, and we need people to know that if she needs a break, trust us, we’re on it. 

So, to recap, your job is to laugh.  Please, please, laugh.  We’ve got this.

Maybe these will bring some chuckles?

  

  
  
  

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Lesson #19: Occupational Therapy: No occupation required

The most recent addition to Tessa’s therapy regimen is Occupational Therapy (OT). Around six months, we noticed that Tessa wasn’t really engaging her hands. In fact, she spent most of her time with her hands balled up tightly in fists. There was very little reaching for objects and if she actually got hold of something, it was released almost immediately. At her IFSP review, we all agreed that it was time to add weekly OT.

OT focuses more on the fine motor skills required to function. Since starting with Kate, Tessa’s therapist, we have seen great strides in her ability to use her hands. She will reach for toys and play with them. She plays with her toes. When on her belly, she will use her arms to push up. Most of the time when she does that, she has her hands open.

We are still fighting with her left hand. She has a tendency to keep a couple of her fingers curled up when she’s pushing up onto hands and knees. She grabs more frequently with her right, using her left to stabilize her body. In therapy, we work a lot with engaging the left. Her issues are small, but on the radar.

OT is one of the therapies that Tessa gets at daycare, so I don’t have a lot of info about what a session might look like. However, Kate sends me detailed notes so that I can see how she did. Right now, just like in PT, we are working on sitting and playing with objects. We have to get Tessa to build strength in her core so that she can stop counting on her hands for stabilization. Kate puts her in a lot of different positions (belly, knees/hands, sitting, etc) and then uses different toys to motivate Tessa to reach for them. We’re also working on getting Tessa to hold her own bottle.

OT, PT, and Speech are once a week for an hour. The last therapy, saved for tomorrow, is Developmental Therapy. More on that tomorrow!

Sitting at 6 months (see the hands?!)

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Sitting now… Progress! (Also, the only happy Bears fan in the USA today)

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