Friday, April 8, 2011

Therapy !

Dearest Lily,

Today was therapy day. I have to admit when I first found out last year that we needed to have a therapist come to our house on a regular basis, I sort of panicked.

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We had so much on our plates already with homeschooling and church and just life with a large family. I'm also- get used to it, Lily- pretty neurotic about having people over...call it obsessive-compulsive or paranoia, but I just can't stand to have people over if our house is a mess. Even if it's a good friend or relative, I really cannot relax with company over unless my house is in order. I wish I was the kind of person who could just say, "Come on in, ignore the mess!" But I think your Grammi ruined it for me all those years ago. Any time we had relatives coming, we spent days cleaning and organizing, and giving everything "the white glove test." (sounds complicated, but really it just meant someone should be able to wear white gloves and run their finger over every surface...and still have it remain white!)

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Anyhow...I did worry that having a therapist come on a regular basis would add a lot of stress to our lives. And admittedly, I struggled a little with having someone else come in and show me how to help my baby. Perhaps it was insecurity, or maybe even pride, or maybe just a little bit of denial about the fact that you really might be different than my other babies... but honestly I was a little apprehensive about Early Intervention right from the start.

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But guess what? We LOVE therapy!!


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And somehow we lucked out and got the best Early Intervention therapist on the planet. Karen immediately set my heart at ease about "being trained to not look at houses, but to look at babies". In those first few months of adjusting to life with another new baby, I had to call several times to reschedule therapy appointments, or cancel altogether.


Once we had a rather eventful night of kids being sick, and Mama was up taking care of everyone. I slept in, woke up late, and was still in my pajamas at 11 a.m. Karen pulled into the driveway and Daddy had to rush out to explain that we just couldn't keep our appointment that day. I am SO thankful your dear therapist graciously said we could reschedule, and even complimented Daddy for rescuing his weary wife. Later when I called to apologize, Karen reassured me she wanted to "relieve any guilt about things that come up"...see what I mean about getting lucky? Actually, I prefer to call it blessed.


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Karen encourages me every visit about how much you are learning, and how far you've come. She sees things even I don't see- strengths that I take for granted. Because I don't always know what to expect from a baby with Down syndrome, I often overlook signifigant accomplishments, but Karen is quick to inform me when you're doing something that is impressive for a baby with Ds.


Today you worked on standing and balancing, and shifting your weight from one leg to another. Karen held a vibrating toy on one end of the couch to get your attention, and helped you to walk along the couch, holding on, to get to the toy. You prefer to just stand in one place, and you haven't quite gotten how to pick one foot up and shift it to the side to move yourself. So Karen gives you "prompts" by gently swaying your hips side to side and then giving them a quick downward thrust...a little reminder to your joints and nerves- "hello! you're here, get to work!" She gently lifts one of your feet and moves it over, and holds onto you hip her with the other hand... and also moves that toy just out of reach. "I'll work the bottom half, you work the top," she tells you, and you turn to stare at her over your shoulder, as if to ask, "who, me?" :)


After that she worked with you on climbing up stairs...

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And then she had you on the ladder and slide- your favorite!

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We're trying to encourage you to soften up those legs- you like to lock your knees, which doesn't really make it easy to climb up things or take steps or crawl on all fours. So Karen tickles the back of your knees or wiggles them to get you to bend your leg...it's quite a process getting you to climb up the slide backwards, or up the steps of the ladder. She waits for you to bend your leg at the knee, and when you do she immediately helps you plant that foot firmly on the slide or step, and holds it there. This gives you the leverage to move your body upward...but she waits for you to do the work yourself. As soon as you push up she helps you lift your other foot...plant, hold, push, plant, hold, push...

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It's teamwork but she really tries to get you to do most of the work. She gives you just enough support to help but not do it for you. And boy, do you like to COMPLAIN when you think she's working you too hard! You actually yelled at Karen today, and last week as well- you turned red and grimaced and pushed with all your might to get up that slide, and you let us know it was HARD WORK!


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Karen helped us come up with homework for all your brothers and sisters. She always tells us we have built-in therapists with all of your siblings and Daddy and I working with you.

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So she instructed Tyler on how to make a chart, complete with tasks for each child to work on with you each day. Each sibling works for ten minutes a day with you on a different goal.


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Abigail sings songs and works on flashcards with you. Noah plays hide and seek and peek-a-boo with you. Caleb works on standing and squatting and shifting weight from one leg to another. Jonathan's job is the slide, and Mackenzie will be teaching you sign language.

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Tyler helps you do "planned catastrophies"- stacking pillows or cushions and allowing you to roll down them safely, so that you learn how to organize yourself and figure out how to fall or land on your own. Jackson's job is to imitate you for ten minutes each day- if you suck your thumb, he sucks his thumb; he leans forward when you do, or claps his hands in response to you doing the same...like a built-in mirror he mimicks your every move.

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After every therapy session Karen gives us notes on how you did and what we need to work on. We discuss things we want to see you do more of, such as signing or getting up on all fours, and we make a plan for how to make that happen.

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It's so exciting to me to be a part of all these milestones; I love knowing I'm contrubuting to your growth and development, and not just "hoping" you'll get there some day.


We've come a long way in the past year, baby girl. Therapy has stretched both you and me, and I'm happy to say I truly do look forward to those bi-weekly visits. I'm so proud of my hard-working girl!


All my love forever,


Mama oxox


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Thank you, dear friends!!

9 comments:

momof4inNY said...

When my daughter (who is now almost 16) was a baby, we had Early Intervention also. My Kaycie has Cerebral Palsy. We had the BEST therapist EVER!!! Sometimes it's hard as a Mommy to let someone else "teach" us how to care for our children, but when you have a special therapist it makes it so much easier! Way to go Lily, the pictures your Mama posts are so precious:

Lori said...

Yeah Lily!!

nicole said...

How awesome to have a "built-in" therapy team! I love the idea of all of them having a role to play ~ it's good for them too!

Anonymous said...

Sometimes I just cannot believe it when I read your heart, Patti, because you remind me SO much of myself. I was the exact SAME way about the whole therapy situation. We have two therapists that come twice a week. One for occupational therapy and one for physical therapy. And I am the same way about my house. It stressed me out a bit at first to have to expect them twice a week. Also, you know how it is with homeschooling. It throws our schedule totally off. But I have learned how to adjust our schedule and activities, and to actually enjoy these sweet ladies coming into my home to help my son. They are a blessing, and I am SO thankful for everything they have taught Benji and I. And I know he needs it. He pulled up all by himself the other day for the first time, and we rejoiced. You know the feeling- all their milestones just make you crazy. We get SO excited every time he does something new. I am so thankful for his therapists help in those milestones. And I am also SO thankful for my built-in therapists at home that LOVE to work with him.

Love the pictures of Lily working SO hard. She is doing GREAT!! What a blessing that you have such a wonderful therapist. Thank you for sharing all of this. We can relate and realize others go through the same emotions as we do. Love, Cara

Lisa said...

I think that maybe all therapist are sent straight from god! My daughter Cate is 5 and has been in early intervention therapy since she was 6 weeks old. I still see her do something just like a therapist taught her and am thankful for their gifts!

Scott said...

Aw! You make me wish Reagan had more siblings. It is fun to watch Lily's experiences and read the commentary :). We love Reagan's therapist also and look so forward to bigger and better accomplishments as she gets as old as Lily is now! What a journey, huh?!

viv said...

I love how she involves the children they really are the best EI you can get

Krista said...

So glad it has been a positive experience. We LOVE therapy.

Anonymous said...

I am so excited for Lily. She is doing amazing things and she is so beautiful, Patti!! I know exactly how you feel...I have always wanted to be the one to do EVERYTHING with my kids without any help, really. When Laura was born and she wouldn't take to nursing right off and then needed the therapy, I felt so sad and almost useless at times. It was hard. I didn't like that someone else was telling me what to do with her. I know it was all pride and I feel that through Laura, God has taught me SO, SO much...even more than with our other babies. He is so good and has blessed both our families with the greatest gifts ever....Lily and Laura <3 I love you guys and miss you so much! And the next time we see you all, we promise not to surprise you...haha P.S. Ash is asleep and I didn't know how to sign in another way..so, I'm anonymous. hehe