My Name is Sarah

MY NAME IS SARAH. I am a quilt designer and the sewcial director of Sarah's Sewcial Lounge. I also have a business called Down Right Charming. I sell my quilts mostly on etsy and I make pillowcases to donate to patients in the hospital in memory of my friend Kristen Kirton. I am a young adult living with Down syndrome. I hope you enjoy reading about my life journey.

Tuesday, August 18, 2009

What message would You like to send to EI (early intervention) Workers


A request from Joyce:

Sarah and I have written before about our dear friend Lisa. She was our neighbor girl who started watching Sarah from the time she was a toddler. Lisa is such a great friend and mentor and truly has had such a significant impact on Sarah being the young woman she is today.
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Lisa is now a Master level medical social worker at Akron Children's Hospital. She has been asked to do a training on Down syndrome for all the Help Me Grow (name of EI program in Ohio) Early Intervention specialists for Summit County. She has asked Sarah and me to help her present, which we are thrilled to do. However, we are obviously a few years progressed from our days of early intervention.
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So, if you were speaking to this group - What would you like them to know? Thank you so much for your help. The talk is on August 26th. I am also going to ask them what they would like parents to know and we will post a follow up.

13 comments:

Lund7 said...

Hi Sarah! Nice to meet you..thanks for stopping by my blog. I am excited to follow yours. You are an amazing and beautiful young lady. It is so nice to see how independant you are. I want that for my son with Down Syndrome some day too!

Advice for the talk you are going to be at...Workers in Early Childhood special ed. need to love what they do. They need to be loving yet set definite guidelines and routines for these children. They thrive in that environment!

Good luck and stop back to my blog again.

ParkerMama said...

Please send me your mailing addy for your Blue Bunny coupon!

Lisa said...

We loved our early intervention workers. There was only one thing I would have changed. I wish they had expected my children to be more obedient and respectful. Once my kids understood they could avoid obeying and get away with it, they totally took advantage of the workers and in turn they took advantage of others who were in charge of them. Smart cookies! :)

AZ Chapman said...

have the ei people know to dream big for the child

Ria said...

1. Never lower overall expectations for the child just because he/she has Down syndrome.
2. It is very important to intensify the input of activities more than you would with a typically developing child, ie. more applause, more encouragement.
3. Please recognize that children with Down syndrome are very capable of achieving so many things if they are given the right opportunities.
4. Always keep open communications with the parents. No one likes to be left in the dark or wondering and in doubt.
5. I think it helps when all therapists work as a team and communicate with each other. By working as a team, they can view the child's development as a whole as they piece each of their roles together. This also gives me an idea of whether everything we are doing matches the bigger picture I envision for Matthew in my own mind.

I hope this helps. :-)

Courtney said...

Hi Sarah! I wanted to first thank you for stopping by our blog and for your sweet message about Lucy. I think she's adorable, too! I am so excited to be following your blog, now, too!

The most important thing that I try to tell my EI team is "thank you". It's hard to remember to tell them after every single visit (they're here a lot!) but it's important that they know how much we appreciate the hard work they do.

I also would want to tell them to try to remember that the child they are working with is not just a child with Down syndrome (or other disability) but that she's my baby. She's my baby first, before everything else. I remember when Lucy first started EI and these strangers were coming into my house and telling me how to hold my daughter, how to feed my daughter, how to play with my daughter. I know it was all in her best interest, but sometimes I just wanted to love her...not have every moment of her life feel like therapy. Lucy used to cry so hard during PT and I felt I wasn't allowed to comfort her, or that the therapist didn't understand how difficult it was to watch my infant daughter cry like that. The babies that they work with are their clients, but they are our children. It's so important to be mindful of that!

I think it's so great that you guys are doing this! I hope be able to give back to the Ds community someday, too!

Tim and Kelli said...

A big thank you for our EI. They had us involved when Lindsey was just 2 weeks old. I don't know if I would have known about what a great resource they are if we weren't referred to them in the hospital.
While we use private therapy our coordinator is out once a month and does everything she can to keep us up to date on the latest things that are out there for Lindsey that we may not know about.
She seems to really love Lindsey and interacts with her so well.
They have an important job and when they enjoy it you can tell.

Mel said...

What a great opportunity. I would want them to have high expectations but also be realistic. As in things that ae practical for a child in a busy household. And that the child is not a project, and they shouldn't look back on their childhood and remember hating therapy- to try to make it a positive and enjoyable experience. They will learn better that way :)

Mama Mason-Mann said...

Hi Sarah and Joyce,
What a cool project! I can't wait to hear what they have to say to us! :) I loved what Courtney said about remembering they are our children and what Mel said about making it enjoyable. Chloe's therapists never push her to the point of misery. They might get close, but as soon as she starts to fall apart she is allowed some mommy love. They play games with her and make her home plans easy to execute in our home. But best of all, our therapists get to know her as a person and us as a family. They are a very important part of our lives and they all work very hard to maintain a strong relationship with us. :) (And they always wash their hands).

Jan and Randy said...

I agree with others have said:

1. LOVE what you do. Love kids.
2. Keep your expectations high but allow the kids to 'succeed'. Small successes create confidence.
3. Variety. Seek out different ways to teach the same thing.
4. Don't let them get away for saying "NO" just because they are cute or little or have Down Syndrome. Keep redirecting them to the task.

Jan

Tausha said...

Always have high expectations for the kids but be loving and kind to them as if they were your children.

RK said...

There have been alot of great responses here, but I'll throw in one more kind of specific one... the best therapists we've had have understood that when they present a book, toy, motivator, or give a request for Braska to do something, they must wait--longer than they feel like they need to--for her to respond and connect with the new thing.

Like we had a PT who would talk nonstop, almost not taking a breath, and Braska would be tuned out almost immediately and therefore not cooperate very well. Braska was always about 3 steps behind her, and you could see her eyes glaze over. We changed PTs and the new one gets it. Really gets it. She demands more from Braska, but she does it in a way that Braska can understand and comply with without getting overwhelmed.

Braska's strength is speech, but if her ST asks her what her name is, then rephrases and asks again after 1 second, then again, she will not hear that she knows her name. But if they ask her and then wait for an extra 2 or 3 seconds, Braska will proudly show off that she knows her name AND how old she is.

I don't know if that makes sense, but it's been the thing that has been the most detrimental when not done and the most helpful when done right... and it seems to be a common thing among our other DS buddies.

You guys will do great!!! Can't wait to hear how it goes! :)

Michelle said...

Hi Joyce-
I definitely think a 'thank you' to start. These people that work with our kids make such a huge difference. At an early age, they are what gets them started in life, gives them direction, goals, teaches us as parents. One thing, is simply to love our children...yes, this is a job to them, one they need to take seriously and one they get paid for, but aside from that, love the children, don't just show up because it's your job, but put your heart and soul into these kids. Our PT does that, but it seems as though our OT isn't quite as vested and I can certainly tell the difference.