CPD Legacy Story: Karen Robinson

September 27, 2011 by cpehrson

This CPD Legacy Story is from Karen Robinson.  Karen volunteers at the Mountain Plains Regional Resource Center, part of the Center of Technical Assistance in Excellence in Special Education (TAESE) at the CPD.

By Karen Robinson as told to Connie Pehrson.

When I was looking for a part time job over twenty years ago, little did I know I would find the perfect job!

I have worked at the Mountain Plains Regional Resource Center at the CPD for the past 23 years. I started out working in the MPRRC Library with Julia Burnham (now retired), doing some filing. I now work a day or two each week for a couple of hours shredding papers, helping with the recycling, book binding, and whatever else they need done.  I like working here because they allow me to be flexible with my schedule. I have recently decided to continue to work here as a volunteer so that I can stay in touch with all of the great people that have become my friends through the years.

Having cerebral palsy hasn’t slowed me down much.  The Cache Valley Transit buses help me to get to and from work because I am able to get my electric scooter on it easily.

The buses also help me get to the activities offered by the local Options for Independence Center in Logan.   I have made some great Halloween costumes for their annual Halloween Party, and have had my picture in the Herald Journal showing them off a couple of times.  Most of the time I win first place!  I have also come in first place a few times in their 3K scooter/power chair races held each year.

I like my job, and I like to work.  Coming to work each week gets me out of the house and gives me a feeling of satisfaction.  I want to thank all of the great people at the MPRRC for letting me come and helping me to be productive and independent.

Here's a selection of photos showing Karen in her Halloween costumes.

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CPD Legacy Story: Becca Crookston

September 7, 2011 by cpehrson

This CPD Legacy Story is written by Becca Crookston whose two daughters have been involved with the Up to 3 Early Intervention program at the CPD.

Part-time Therapist, Full-time Mom
By Becca Crookston

As a mother of children that need extra help, I am busy. I love the Up to 3 Program. It helps me solve the current problems I deal with everyday. But, it also adds to my busyness. They have also helped me find other services in the community for my children to benefit from, such as great interactive story times, and Signing Time products, and even a Rachel Coleman concert. These events also add to the busy in my life, but it is worth it. I am busy for my children. I am busy because I’m a mom.

My husband and I have four children and they, of course, all have different needs. All of them have been in speech therapy.


I have elementary-aged boys. I volunteer in their classes at school and serve on the PTA board, so I can ensure they know I care about them and their education. They know they can tell me so-and-so did such-and-such and that I know the personalities in their classes, so I believe them and can help them brainstorm a solution to the problem if needed. They talk to me about things that are concerning them more than they would if I wasn’t in the classroom. (I know because I spent half a year not volunteering in the classroom.)

Speaking of talking to me…that within itself is a major milestone for my autistic son. We lived out-of-state when we were doing early intervention with him, so we didn’t get to use Up to 3, but at least we did have help. Now that I’m familiar with the classes offered here, I wish we had been here. He could have benefited from the Leap Frogs class (Let’s Eat And Play). New food has always been a challenge for him. It’s not like we were trying to make him eat crazy stuff either, just “normal” things like eating a cookie without eating around the chocolate chips, or putting milk on the cereal, or eating grapes without peeling them, or eating a strawberry with the seeds and all. He has made great progress and I am extremely proud of him, however we are not out of the woods yet.

Last year my second son was in a speech program at his elementary school. One day when he was sick, I went to get his homework. His speech teacher wanted him to work on a certain sound, but when she pulled open her file with that letter, she realized she was out of the pages with the words she wanted him to work on. I explained that I could pull words out of my file, and stick them in a game to have him practice. She was impressed, but I wasn’t trying to impress. I was just being his mom.

We first learned about the Up to 3 program when my oldest daughter failed the hearing test at age 2. We were shocked as could be. We set an appointment for surgery and called around looking for a early intervention speech program. We got the initial testing done over the phone. Kathryn, our service coordinator, asked me questions about her speech and I said she has two sounds. She says “ma,” and “ba.” She made those two sounds stand for, mom, milk, more, bottle, ball, and bird, as well as anything else that she could get away with. She was in the program for one year, until she turned three. During that time we attended most of the classes offered, but her favorite class was Signing. She picked it up so fast. She knows more signs than I can count. She learned about 200 signs in a month. She had found her way to communicate. She would see it and start using it. I would study each word and try to figure out where to put my fingers, review the words, teach the words to my family, and keep a list of words we still needed to learn. When a college-age person saw that I was signing, she told me that she took a signing class and it was hard and asked how could I keep the signs straight? The difference between us, was she wanted a good grade and I wanted to communicate with my daughter. I did it because I’m a mom.

I’m sure we had a few too many potty training accidents that were my fault. When someone signs they need to go and you don’t look at them, because dinner is important, too, you end up having to put dinner on pause anyway. We still sign in our home, mostly out of habit. I don’t really realize I’m signing most of the time. Signing helps us clarify words. “Thirsty” and “fishy” sound the same when my daughter says them, so to know if she wants crackers or a cup, we rely on sign. I have to really focus sometimes and realize how much signing we use. The times that she signs without vocalizing too, we know to have her ears checked. She is on her fourth set of ear tubes.

As we approached the time we were going to need to exit the Up to 3 program, many of the teachers told me we would be back. My second daughter was following the same pattern. We caught it earlier with her and she had her first (and so far, only) set of ear tubes placed at 16 months old. She will exit the program next month when she has her third birthday, but we know what to do at home and in the community because of the Up to 3 Program.

Sometimes attending different classes and hearing different approaches to behavior and speech was really frustrating. If one teacher tells me to require and push sounds, and the next teacher tells me to use picture cues, and the next teacher says to accompany a sign with each routine, it can be a little bit–well, really a lot–confusing. I have to remember that I am the mom and these ideas are suggestions. It is up to me and my husband to try them, and work them into our daily life, figure out what is working best, and know when to push a little harder.

As we have another birthday around the corner, I sometimes feel like we are being dropped from the system on the school district side. With our oldest daughter we went from ten hours of classes a week at Up to 3, to forty minutes a week at the school district! I know we have made wonderful progress and I don’t want to only focus on the things we still need to work on, but those needs do need to be addressed. I address the needs because I am the mom. When we transition to the school district and they don’t see the need to provide as many classes, I know we can find the help my children need by relying on the information I already have put into practice and made into habits.

The Up to 3 Program provides so much. It is easy to take it for granted. I wouldn’t be able to provide these services to my children or know what specific testing to request if I hadn’t been trained from Up to 3.  Kathryn is frequently asking me about our whole family. She has given me ideas that work with all of my children.

Maybe some of the best advice I’ve received was a few months ago from one of the Speech and Language Pathologists, Stacy Sessions. She reminded me that sometimes a child needs to be a child and I need to be the mom. Maybe the days get too full of therapy. Maybe snuggles need to be given and the book needs to be read without any therapy requirements. Maybe sometimes the juice needs to be poured without requiring the articulation of the word be practiced. Maybe I should push her in the swing more than three times before stopping the swing and having her request more. All of the things we do for therapy daily are habits. We push and always require a little more. Do we really congratulate and enjoy the small advancements? I think we should also enjoy being a busy mom.

After all, I am a part-time therapist and a full-time mom.

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CPD Legacy Story: Traegan Jones

July 14, 2011 by cpehrson

This Legacy Story is written by Heather Jones, the mother of Traegan, who receives services from the Up to 3 Early Intervention program.  This story was originally written as a post on her family blog.


I feel like a good mom for the first time in a while. 🙂 Not because I’m sitting here blogging, but because Traegan is doing so much better!

Traegan has never been a big talker. Or a big eater, like he doesn’t eat anything. Or a great sleeper. I just have always assumed that was all normal for my child, but things are so much better now.

About a month ago, I took Traegan to the doctor to get the rash around his mouth looked at. (“It’s Wet/Dry Cycle. It’s nothing serious and pretty much impossible to get rid of.” Yea.) While there I mentioned how I was worried about Trae’s speech.

Everyone, including the doctor, told me not to worry about it. That he would talk when he was ready and he was fine. But because a member of my family had some pretty severe speech delays, I was worried. I know how beneficial it is to catch problems like that early and get them caught up to “normal” before entering school. Plus, I had a sneaking suspicion that his delay was due to me not teaching or engaging him in the correct ways.

The doctor gave me the number for the Up to 3 Program. Best. Program. Ever. It is a free evaluation, so worst case scenario, he qualifies for services and best case, they say he is fine and I have peace of mind.

Anyway, he barely qualified for speech therapy. And in about two weeks he has about 7 new words. It has been a drastic change. He is trying so much harder to talk, understanding more, and is much happier. And I am properly equipped to help him now. I now know how to talk to him and how to play with him so that he can learn easier.

Also, as part of this whole thing, we met with a nutritionist. There I found out that Traegan was drinking WAY too much milk. Go me. And because of that, he was always full. Now that we have remedied that, the boy eats like a champ. And he is sleeping so much better now.

So all in all, that was the best phone call I have ever made. I’m so glad I did it.

I’m not going to lie. I sometimes felt like a failure mom during the process. But that is just dumb. I’m a first time mom who doesn’t know everything and is okay admitting it. Help is available, why not use it? I’m so grateful that programs like that exist because sometimes you just need to ask for help.

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CPD Legacy Story: Owen Cook

June 16, 2011 by cpehrson

This Legacy Story is written by Jennifer Cook whose son, Owen, is part of the Up to 3 Early Intervention Program at the CPD.

When Owen was 18 months, we started doing evaluations to see if he was eligible for services with this program  (Up to 3 Early Intervention Program). We were very nervous at first about what things would be like and how he would be treated, but those nervous feelings subsided with the very first meeting. Everyone we have worked with since that first day has been nothing but kind and considerate to us.

As we learned more and started getting some techniques and guidance, we saw a big difference in our son. It wasn’t overnight, but everyone has been so good to us. They have been encouraging and given us advice, support, and ways to have a better relationship with our son. We have felt listened to, cared about, and strengthened by these wonderful people that we’ve worked with. One of these caring people even gave up a part of her Saturday to help teach my family and my husband’s family some techniques to better communicate with Owen as well.

We have really felt encouraged, informed and truly cared for by the people we have worked with. Having a child with autism can be very challenging and we’ve worried about things like development, learning, social interactions, if he’s happy, if we’re doing okay as parents, and many other things, as you can imagine, but we have felt cared for and that every one of these worries and concerns have been addressed and that we as parents have been cared about as well.

I would encourage anyone and everyone to make use of these wonderful people and services if there is a need. You will feel loved and strengthened through a challenging time in your life as well as your own child’s development. You will feel cared about and that your child is special, and not just another person that they work with.

I trust these people whole-heartedly and know that they have the best interest for my son in mind. I will forever be grateful to have been a part of this program and to have not only great specialists, but friends.

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CPD Legacy Story: Madeline & Caleb Gauthier

May 23, 2011 by cpehrson

 

We knew when Madeline was a day old that not everything was going as planned.

Her sucking and rooting reflexes were undeveloped and she lost an unhealthy amount of her birth weight after her third day of life. We went to a breast-feeding specialist for 6 weeks in an unsuccessful attempt to find ways to help her learn to latch and feed properly.  For the first 7 months of her life, committed to providing “the best” for our child, we fed her pumped breast milk in a bottle.  She did not allow us to hold her for feedings, cried all the time, smiled little and showed a hyper-alertness that is not typical for most children.  For the first three months of her life, she had a burning liquid diarrhea that blistered her bottom.  We spent a fortune on pediatrician visits and were continually told we were worried about things that would resolve naturally.

Between 5 and 15 months Madeline did bond well with us, but sensory issues continued to interrupt the natural equilibrium that typically developing infants establish.  Eating and drinking remained problematic; she could not tolerate strangers or acquaintances, sunlight in her face, the texture of grass on her feet; she frequently held her hands over her ears.

When Maddie was around 18 months, we began searching desperately for answers and stumbled upon something called, “sensory processing disorder”. We read Carol Kranowitz’s book, The Out of Sync Child and everything started to fall into place. We implemented some of the sensory diet strategies and began to realize we could help our daughter by changing her environment.

One day my mother dared to mention the word “autism”, and we responded with angry defensiveness, but at nearly two years of age, Maddie began turning inward, almost disappearing right before our eyes and we knew she was probably right to be concerned.  In a chance meeting that we viewed as divine intervention, a neighbor’s visiting friend from the Mississippi Department of Mental Health did a quick MCHAT and “saw” her autism.

We were dazed but started making calls to get early intervention services involved. Our attempts to reach out for help coincided with an unfortunate investigation of fraud and subsequent freeze on services provided by the Mississippi Department of Health, the administrators of Early Intervention in Mississippi.  Getting an evaluation for Madeline required a degree in social work and the tenacity to make phone calls to the highest levels, holding the State of Mississippi accountable for it’s commitment to provide desperately needed intervention services for some of the most impoverished and vulnerable children in the US.  We were able to get some OT services in place for Madeline and while it was not nearly enough, we were grateful for anything.

Caleb was born when Madeline was 15 months old. Caleb’s infancy was a lot more typical than Maddie’s though he always had tremendous gastrointestinal discomfort. At about 10 months, Caleb began to lose words, cover his eyes with his hands, make motions with his fingers near his eyes as he was falling asleep, and he stopped gazing into our eyes while feeding. Our hearts sunk and we prayed a desperate prayer that he would stay with us and not disappear into himself.

When we received word that Chris was being offered a position in the Department of Art at Utah State University, we immediately began researching the services available, and found The Center for Persons with Disabilities. I will never forget the professional, compassionate response from Sue Olsen (Director of the Up to 3 Early Intervention program), the phone calls that ensued, and the evaluation process that opened the doors to intervention for our children.  We felt like the cavalry had arrived.  Madeline was 2 and a half, Caleb, 12 months. Both were evaluated and qualified for Occupational Therapy, Speech Therapy and Autism related intervention.

Our ASD early intervention specialist, Janel Preston, introduced us to a book written by Dr. Stanley Greenspan, Engaging Autism. This book, and the mentorship provided by The ABC class were critical to keeping our children relating and communicating, adaptive and creative.  Understanding the DIR/Floortime intervention model made it possible for us to provide what the kids needed at home during their toddler years.  We read Dr. Bock’s book, Healing the New Childhood Epidemics: Autism, ADHD, Asthma, and Allergies: The Groundbreaking Program for the 4-A Disordersand started a gluten, casein, and soy free diet.  While we understand that dietary interventions don’t work for every child on the spectrum, it made a huge difference for ours.  We added probiotics, and other supplements, including the anti-inflammatory, yeast fighter, Enhansa.

We have amazingly creative and expressive children, but the road has been rocky, and our journey as a family has really just begun. Madeline and Caleb aged-out of early intervention when they turned three, barely qualifying for services at the time of transition, but if there is one thing we have learned over the past couple of years, it’s that the intensity of their autism is directly related to systemic health issues, including inflammation from an erratic immune response. And so for us, progress ebbs and flows.

As a result of our experience parenting children affected by ASD, we have become exposed to the local to global “autism community” and have been stirred to start a collaborative long-term photographic project called Evidence and Artifacts: 1 in 110 (some photos shown below). his collection of portraits compels the viewer’s engagement, and demands a sensitive visual inquiry of the individual faces. In the act of looking, the viewer may experience a sense of being “seen” by the children, in their delight and anguish; “seen” by the fierce and loving families in their grief and hope; “seen” by the teachers and therapists in their commitment to the notion that all children can learn; “seen” by the compassionate medical professionals in their search for ways to relieve human suffering and “seen” by the scientific and academic research community who dare to raise disquiet in their pursuit of truth. We believe what is revealed by the portraits has the power to push the conversation past the political entanglements preventing funding for a massive and comprehensive research effort to find answers for our children. 

“Each time a man stands up for an ideal, or acts to improve the lot of others, or strikes out against injustice, he sends forth a tiny ripple of hope, and crossing each other from a million different centers of energy and daring, those ripples build a current that can sweep down the mightiest walls of oppression and resistance.” – Robert F. Kennedy

We are humbled by the warm reception of Evidence and Artifacts: 1 in 110 and are grateful for the opportunity to impact the national dialogue on autism. If you are interested in participating in the project, feel free to contact us for a portrait sitting.

Christopher and Jacqueline Gauthiér

jax@christophergauthier.com

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