A Mothers Voice-as an Educator and Parent

As a parent, we only want what is best for our children and we quickly learn that we are their only voice.  Brandon was born at the end of October and at our 2 month check-up with the doctor, I expressed concerns that I had.  I had noticed he was tight on his right side (his arm and leg were more stiff when I changed him), right tilt of his neck and a very visible flat spot on the back of his head.  I asked the doctor what she thought and she just nodded and said “well maybe..”  I asked her if it warranted a call to Early Intervention and she said it was up to me.  I was really looking for someone to tell me what to do since you are just figuring everything out for the first time as a new parent.  But then I remembered that I am Brandon’s only voice.  I placed a call that afternoon to Early Intervention of Montgomery County and 2 weeks later had an evaluation in my home for Brandon.  It was determined from the evaluation that yes, Brandon had Torticollis and we had Physical Therapy, 1x/week.

Chris Lewis, our Physical Therapist has been monumental in Brandon’s development.  Brandon had a tilt to his right side and his Torticollis was also related to his Reflux.  She provided suggestions and strategies on a weekly basis and my husband and I were like sponges!  We wanted to do EVERYTHING that she recommended.  There was one session in particular that she showed me a football hold that we could show my husband to make him feel more involved since he was not there for the sessions.  He tried the position that night and was so excited that he was practicing with Brandon.  I was involved for the first 2 months for his sessions because I was still home on Maternity Leave.  Chris also took a picture of the position so that I could use it to show him and model.  We also received our session notes electronically and it is great because I am able to send them to other family members and my husband to keep them updated on Brandon’s progress!  A few weeks later, she discussed ways of making Brandon more independent while I did activities around the home.  We had a fancy highchair still in the box and Chris recommended a feeding chair that was more appropriate and we could use it earlier b/c it would fit him better.  HE LOVED THE CHAIR and being able to play with his toys!  I loved it because my arms and hands were free to prepare dinner!!!  Chris learns about your routine as a family and builds strategies around what you do during the day.  Now that I am back to work, I send Chris updates about Brandon before his session so she knows what we have been working on and all the new things he is doing, trying  and learning.  There is always ongoing communication which I value as a mommy!!!

Most recently, we had our quarterly review and Brandon is doing EXCELLENT.  There is no visible tilt and the flat spot on his head is unnoticeable!!  Our service frequency has been decreased to 1x/month from 1x/week already!!!  Early Intervention, Kencrest and Chris Lewis are the key reasons why Brandon made such a huge leap in development.  I just think that if I didn’t make that call in January, we would probably just be starting the process after his 6 month checkup and the diagnosis of Torticollis could have prolonged his development in rolling, sitting and other future milestones.  He is also thoroughly enjoying sitting like a big boy in the store carts now thanks to the green light from Chris.  I was telling her how much he loves to see what is happening when we are shopping and she recommended that we try letting him sit in the cart.  We tried it that night and as you can see from the picture, he was a big FAN!!!  Thank you for all you do and the positive impact you have on so many young lives!!! Continue reading

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Early Intervention at KenCrest- A Family’s Perspective

The follow is a portion of an interview conducted with a family that has received services from KenCrest’s Early Intervention Staff.

Violet playing with bubbles!

Tara Lyn, mom of Violet, says “Therapists at KenCrest have always made me feel comfortable to express concerns.  They were easy to contact throughout the week and very responsive to our needs as a family.” When Violet received services with KenCrest, she was able to discuss all strategies that worked with the therapists. “The team is great about giving information and is using if something was not working.”

KenCrest therapist offered suggestions for Violet including certain exercises to try to help with her oral motor weakness.  Currently Sandy, KenCrest’s Occupational Therapist, is great about showing Tara exercises to improve low muscle tone.

“The team at KenCrest always made sure I understood the strategies they went over that week during our session and were happy to clarify if I was unsure.”

“Initially when Violet was evaluated, I had no idea how the process worked.  Along the way, everyone explained what to expect and what I needed to do to help violet along and as a result, Violet has come so far and is progressing nicely.”

 

You can find KenCrest staff at a variety of events this month representing Autism Awareness. Our next event will be a the Philadelphia Zoo on April 13 at noon.

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Early Intervention- A Family’s Perspective

The following is a portion of an interview conducted with a family that has received EI services through KenCrest. The mother (Tara) of this beautiful child (Ella-pictured) provided the following information during an interview with our EI staff.


Ella has been receiving Early Intervention Services for almost a year now and has been with the same Physical Therapist (PT) from the start. Ella’s mom, Tara did not know what to expect from Early Intervention but was very familiar with Physical Therapy with Infants and the Developmental Milestones for children from her experience working as a NICU Pediatric Nurse.Tara reports, Ella’s PT has been absolutely GREAT!  We are always working with new things and she includes Ella’s twin sister during our sessions.  She is able to email our session notes which I love to forward to my husband since he is not present for her therapy and suggestions.  Ella is extremely receptive to (the PT) and wants to impress her.  Ella works so hard and our other daughter also gets upset if she misses (the PT).  I always prepare the girls in the morning by telling them that (the PT) is coming and if Ella’s sister is napping during the time (the PT) is at the house, she is sad…At the beginning of service, the girls were close in development but as time has passed the gap between developments of the 2 has changed.  Ella is rolling over and sitting up while her sister Kaitlyn is walking.  Ella is working on weight bearing and pulling up.  The girls initially were not parallel playing but now they are so interactive with one another. 

I have leaned more than anything to not get wrapped up with what Ella may not be doing but to celebrate and be positive with what she is developing and doing.  We want to support her to succeed, watch her progress and be positive.  We always want to know how we can improve on her current skills. We have also learned to use her motivators and build on those.  She loves people and any praising and clapping.  The PT recently gave us a strategy to use a bin with weights to promote Ella to pull up to her favorite toy.

When I asked Tara to summarize her experience in 1 or 2 sentences, her response was GREAT!!  She stated that Early Intervention seamlessly works into their normal routines nicely.  The girls love the sessions and they are so happy when the therapists are visiting.

References:

www.portal.state.pa.us

www.nichcy.org/babies/overview

About the Author: Rachel Houseknecht is an Assistant Director for Early Intervention (Birth-3yrs) for KenCrest Services – Chester, Delaware, and Montgomery County

 

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From The Room Down the Hall: A Sister’s Perspective

By: Eileen Falchetta, KenCrest Staff

In the next several blogs, we will be telling stories of families dealing with autism and developmental disabilities. It is our hope that if we share our stories they can inspire and encourage all families with members on the Autism Spectrum.

I come from a very close-knit family. My parents have been married for over 30 years, and I have two wonderful brothers. Fifteen years ago, when my youngest brother Joe was just 7 years old, we found out that he had Aspergers. At the time, there was not much research about it; therefore, my family treated Joe like everyone else.

Being an older sister has its perks, but when you are dealing with someone with Aspergers, there are things to consider.

1-      Be careful how you tease. It’s inevitable that if you are an older sibling, you will find ways to torment your younger brothers and sisters. But, if one of them happens to have Aspergers, they may not get over the torments so easily, nor will he/she understand sarcasm.

2-      You may never win a debate. My brother is very headstrong and insists that Donovan McNabb should have never left the Philadelphia Eagles. He has statistics to prove it. I do not. I can just argue. He can back up his arguments with facts and figures.; which is the same for politicians, bands, etc.

3-      Accept your sibling’s daily habits, even though you may not fully understand them. Joey likes to heat his ice cream for 30 seconds before he eats it.  Who knows why; I can ask him why until he is completely annoyed with me. I finally know these habits will not change.

4-      Sometimes you may not hear the words ‘I love you’. People with Aspergers may express feelings differently. Once in awhile, I will get a small nudge or pat on my back. I know he loves me, he will just show it differently than my other sibling.

5-      Be their best friend. Growing up, it may take some time for your sibling to make friends as easy as you did. As you are busy making plans or bonding with family, make an effort to include your sibling. You may be their best friend and it is up to you to help give them the confidence they need to succeed.

I am proud to say that even with Aspergers; Joey was his high school Prom King. In college, he worked as a sideline reporter and sports announcer for several La Salle sport teams. He was a lead anchor for the school’s sport show which was aired on cable each week. He networked with some of Philadelphia’s finest sport anchors and reporters.  He has friends and is one of the most personable, talkative people that I know. I’d even like to think of him not just as a brother, but as an inspiration. The least I can do for him is to be an understanding older sister.

References:

Atwood, T., & Garnett, M. (2013). From Like to Love for Young People With Asperger’s  Syndrome    (Autism Spectrum Disorder): Learning How to Express and Enjoy Affection With Family and    Friends, Jessica Kingsley Publishers.

Russell, A.J., Mataix-Cols, D., Anson, M., Murphy, D.G.M., (2005). Obsessions and compulsions in   Asperger syndrome and high-functioning autism. The British Journal of Psychiatry.

Rao, P.A., Beidel, D.C., Murray, M.J., (2008). Social Skills Interventions for Children with           Asperger’s Syndrome or High-Functioning Autism: A Review and   Recommendations. Journal of Autism Developmental Disorder , 38, 353-361.

Other editions

Enlarge cover

Top of Form

Winner, M.G.,  www.socialthinking.com

For more information on KenCrest’s services visit www.kencrest.org/autism-services

 

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Early Intervention…It Makes A Difference!

It is widely believed that early intervention programs that involve parents are more effective than those that do not (White et al., 1992). That is the premise that guides the work of the early intervention professionals at KenCrest. The understanding that the first few years of a child’s life are a sensitive period in their development for cognitive, behavioral and overall physical health is paramount. The clinicians at KenCrest, with specialties in Speech, Occupational and Physical Therapy, work endlessly to involve the families in their treatment, knowing the impact that families will have on their child’s progress.

In the coming weeks, we will write about several families that have experienced early intervention services first hand. You will hear their testimonies as they share the “ups” and “downs” of their journey.

 

References:

  • White, K.R., Taylor, M.J., & Moss, V.D. (1192). Does Research Support Claims About the Benefits of Involving Parents in Early Intervention Programs? Review of Educational Research, 62, 91-125.

 

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AUTISM and EXERCISE

Getting in Shape and Staying in Shape can be difficult!

Many of the families we serve indicate the need to increase activity patterns in their kids. “They watch too much TV and they play too many video games,” reported one mother when talking about her children. The following links can help parents motivate their kids with positive activities that will Get Them Moving!

http://www.youtube.com/watch?v=uYJcw_bA8sI

http://www.youtube.com/watch?v=-X-QkJq1TsI

http://www.youtube.com/watch?v=HUJ1p_oPjqA

http://www.youtube.com/watch?v=vlfzzu5fQjs

http://www.youtube.com/watch?v=Gm8u2BDeMmA

http://www.youtube.com/watch?v=RQwzoZWxnDM

http://www.youtube.com/watch?v=8cvvEDBWnRc

http://www.youtube.com/watch?v=BBJHXU4Egbg

http://www.youtube.com/watch?v=JNuWOYwSoHw

 

The above lists of links are here for you to consider as you plan activities with your family. This author does not endorse any of the sites. They are simply offered for you to research as a resource.

References:

  • YouTube

 

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Autism and Exercise

Happy New Year!

If you’re like most people, the holiday season has left you with a few extra pounds to carry around each day. The New Year sparks new beginnings. In fact, the #1 New Year’s Resolution (according to USA.gov) is Lose Weight. As families with children on the spectrum try to plan activities together, one consideration may be an exercise plan. Doing things together as a family will bolster the success of everyone participating. I have included the following links to assist you in planning for your family.

Good luck and Get Fit!

The following YouTube videos have a variety of exercises you can model for your kids.

http://www.youtube.com/watch?v=e-uR6oLzbZk

http://www.youtube.com/watch?v=1G8f1DokAHM

http://www.youtube.com/watch?v=OmhXgYyVL2Q

http://www.youtube.com/watch?v=MpjIAVXRPcM

http://www.youtube.com/watch?v=4GTTtFNQcXc

 

The following links will help you with ideas to keep your kids active.

http://playthroughautism.com/

http://www.ericchessen.com/

http://www.autismsupportnetwork.com/news/five-myths-about-fitness-and-autism-768933

 

The above lists of links are here for you to consider as you plan activities with your family. This author does not endorse any of the sites. They are simply offered for you to research as a resource.

References:

  • YouTube
  • USA.gov
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GF/CF Diet for the Holidays!

Gluten Free Chocolate Chip Peanut Butter Cups
Peanut butter-filled cookie cups made gluten free with Pillsbury® Gluten Free refrigerated chocolate chip cookie dough! They’ll be asking for more!
prep time 20 min
total time 1 hr 45 min
ingredients 2
servings 24
Ingredients
1 container Pillsbury® Gluten Free refrigerated chocolate chip cookie dough
24 gluten-free miniature chocolate-covered peanut butter cup candies, unwrapped
Steps
1 Heat oven to 350°F. Place mini paper baking cup in each of 24 mini muffin cups. Spray paper baking cups with cooking spray.
2 Place 1 level measuring tablespoonful cookie dough in each paper baking cup.
3 Bake 10 to 12 minutes or until dark golden brown. Immediately press peanut butter cup candy into center of each cookie cup. Cool 5 minutes; remove to cooling rack. Cool 10 minutes. Refrigerate until set, about 1 hour.

Cappuccino Dessert
What You Need
1 pkg. (1.5 oz.) JELL-O Vanilla Flavor Fat Free Sugar Free Instant Pudding
2 tsp. MAXWELL HOUSE Instant Coffee
2 cups cold fat-free milk
1/8 tsp. ground cinnamon
1 cup thawed COOL WHIP LITE Whipped Topping

Make It
BEAT dry pudding mix, coffee granules and milk with whisk 2 min.; pour into 5 dessert dishes.
REFRIGERATE 1 hour.
WHISK cinnamon into COOL WHIP; spoon over pudding.

Fruit Scones
Makes 8 servings
2 C GF flour mix (Whisk together 6 cups brown rice flour; 2 cups potato starch; and 1 cup tapioca starch)
¾ C sugar
2 ½ tsp. GF baking powder (baking soda with tarter)
¾ tsp. xantham gum
½ tsp. salt
½ C (1 stick) cold GFCF butter
1 C diced dried apricots, raisins, or cherries
3 large eggs
1/3 C cold almond, coconut, or rice milk (add small amounts if mixture seems dry and flaky)
1 ¼ tsp. GF vanilla extract

1. Preheat the oven to 400 degrees. Grease a divided scone pan, or grease (or line with parchment) a baking sheet.
2. Whisk together the flour or flour blend, sugar, baking powder, xanthan gum, salt, and nutmeg.
3. Work in the cold butter till the mixture is crumbly.
4. Stir in the dried fruit.
5. Whisk together the eggs, milk, and vanilla till frothy.
6. Add to the dry ingredients, stirring till well blended. The dough should be cohesive and very sticky.
7. Drop dough by the 1/3-cupful into the scone pan or onto the baking sheet. Let the scones rest for 15 minutes. With a brush, give the tops a milk wash.
8. Sprinkle the scones with sparkling sugar or cinnamon sugar, if desired. Bake for 15-20 minutes, till golden brown. Remove from the oven and let rest for 5 minutes or so before serving. Best enjoyed warm, with butter and jam.

Pecan Pie
Makes 6 servings
1 C light Karo syrup
3 whole eggs plus 1 yolk, beaten
½ C light brown sugar
½ C white sugar
2 T CF butter alternative
1 tsp. vanilla
¼ tsp. almond extract
1 ½ C pecans
1 9-inch unbaked GF pie crust
TIP: partially pre-bake crust

1. Combine all ingredients except for the pecans. Mix well. SLOWLY pour filling into pre-baked crust.
2. Arrange the pecans on the bottom of the partially baked piecrust, pour the filling over them. The pecans will float to the top.
3. In a preheated 350 degree oven, bake for 55-60 minutes or until the filling has set. Allow pie to cool on a rack for at least two hours before serving.

Reference:
www.pillsbury.com
www.kraftrecipes.com
Autism File, Issue 47, Dec-Jan 2013.

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Holiday Tips for People with Autism (Part 1 of 3)

Season’s Greetings! It’s that special time of year again when people swarm the malls, when we call or send letters to family members that we haven’t spoken to in some time, and when many of us reminisce over the joy of seeing our school district on the list of snow day closings.

For many neurotypical folks, this time of year is wonderful but can be a tad stressful. The holidays can be even more challenging for our friends, family, and coworkers with Autism Spectrum Disorders. While each individual is unique in what that person can handle with varying comfort levels, I would like to offer a few tried and true tips for a happier and healthier holiday season.

Here is our’s top five list for a wonderful winter workplace:

1. Always be mindful of the variety of spiritual backgrounds, ability levels, sensory concerns, gender/sexuality orientations, etc. that are in the office when deciding on a venue for an end of the year party. Maybe it’s not the best idea to have an office event at a noisy bar if some employees have sound sensitivities. Simply be considerate.
2. When deciding to have a “white elephant” or other gift giving event, make sure that each employee offers a list of 3-5 possibilities so that employees who may not be the most socially adept can have a slightly easier time purchasing presents for people they may not know well. This is a nice offering for all employees to reduce the stress of picking out the right gift.
3. Don’t assume that anyone understands the rules for any holiday gifting event or party venture. In order to avoid singling out any individual as festivity-challenged, offer a printed up list with expectations for the event including money maximums and minimums, examples if appropriate, and explanations of dress code if necessary.
4. I know that this time of year brings people closer together figuratively, but literal closeness can be intimidating and uncomfortable to some employees. A holiday hug might sound like a great idea, but physical boundaries in the workplace should always be respected. As awkward as it might feel, asking if someone would feel comfortable with a “see you in 2014” hug goodbye is a necessary strategy. If someone has actually had the courage to offer a negative response, this boundary should be respected. A warm and heartfelt “thank you” or “I’ll miss you for a few days” is sufficient to express the emotion.
5. The colder weather, darker days, and pop-up festivities can cause the office dynamics to derail from the usually regimented work environment. Some individuals with ASD rely on this structure for security throughout the day. It’s important to offer options to all of the employees, but if there is still that 1 person who would prefer to email reminders around the office rather than prance around the office singing memos while wearing ugly sweaters, then this is acceptable too. The merriest moments happen when everyone is accepted and appreciated for who they are and what they do.

This blog is brought to you by Autumn Dae Miller, Ph.D. Autumn likes to celebrate the season by wearing a giant squirrel costume, but faux fur isn’t on the list of KenCrest approved work apparel so she’ll have to save that for a family event.

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Gluten Free Thanksgiving Dessert

With the countless options on the table at Thanksgiving, including dessert, we offer you a gluten free one !

GLUTEN-FREE
MAPLE VANILLA BEAN APPLE PIE

INGREDIENTS

Use organic ingredients where possible.
6 large Granny Smith apples

  • Juice from 1 lemon
  • 3 tablespoons sweet rice flour
  • ¼ cup maple syrup
  • ¼ cup sorghum syrup
  • 2 teaspoons Frontier® cinnamon
  • ½ teaspoon Frontier® nutmeg
  • ¼ teaspoon Frontier® cloves
  • 1 Frontier® vanilla bean

Crust

  • 1 ½ cups oats
  • 1 ½ cups pecans
  • 2 tablespoons butter
  • ¼ cup brown rice syrup
  • ¼ teaspoon sea salt

Crumble Topping

  • 1/3 cup organic cane sugar
  • ¼ cup butter

DIRECTIONS

  • A few hours or the night before, peel and slice apples
    into even, ¼-inch thick slices and toss with lemon juice and flour.
  • In a small pot, combine maple syrup, sorghum syrup,
    cinnamon, nutmeg and cloves. Split the vanilla bean in half and scrape out the
    vanilla into the pot as well. Heat over low until warm and starting to bubble
    around the edges, whisking occasionally. Pour over apples and toss until apples
    are coated. Cover and set aside. If overnight, store in the refrigerator.
  • When ready to bake the pie, preheat oven to 375 degrees
    and lightly grease a 9-inch pie pan.
  • In a food processor, pulse oats to a coarse flour
    consistency. Remove oats and place pecans in the food processor, pulsing again,
    to resemble coarse meal but careful not to make nut butter. Add oats back into
    the food processor along with butter, salt and brown rice syrup. Pulse mixture
    a few more times until it is well combined and starts to form a ball.
  • Take the oat mixture and press into the pie pan to form
    the crust. Bake the crust for 12 to 15 minutes until set and lightly brown.
    Remove crust from oven and add filling.
  • To make crumble, place ¾ cup oats in a food processor and
    pulse until it resembles coarse flour. Add the sugar, remaining oats and
    butter. Pulse until everything is just combined. Sprinkle and pat crumble over
    the filling.
  • Bake pie until filling is bubbling and the crumble is
    browning, 45-55 minutes. Transfer pie to a rack and let cool before serving.

Note:
Ensuring the apple slices are the same thickness will help the pie bake and set
well. Using a mandolin or apple peeler can help with this task.

Sources:

http://www.frontiercoop.com

Living Without, December/January 2014

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