Love for Alyssa

A Journey to Discover His Voice - Riley's Story

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Riley Kuiper, Flagler Beach,FL. December 2011

Riley Kuiper is 8yrs old and autistic. Riley's mom is a friend of mine who I met through my journey with Love for Alyssa.   She is a special person, we had not known each other before and she did not know Alyssa either.  Jennifer even teaches at Flagler High School in Palm Coast, FL., at the same school that Alyssa's father teaches, though they did not really know one-another.  Jennifer had learned through the local paper about Love for Alyssa and reached out to assist.

Besides being so generous, she also began helping with different fundraisers.  I'm so thankfully to her for all she has done and grateful to have been able to meet someone as caring and giving as she.

I first met Riley last year when I took the above photograph.  I asked Jennifer if she wouldn't mind me posting his photos and telling about him because I just think he is one of the coolest kids, but then I thought it would be much better to hear a little about him through her words. I'm glad I suggested that because I learned so much more about him and so much more about her.  Now I've come to understand why this special person appeared out of nowhere to lend a helping hand.

I wanted to publish her story because my goal is always the hope that at least one person is being reached. I truly believe sharing her journey will connect with somebody. The road is not an easy one, but being proactive in a childs life that faces many challenges will make a world of difference for them in the years to come.


 This image captures Riley's personality perfectly. He's always happy,and always ready to make you laugh. December 2012

A Child's Journey to Discover His Voice While Battling Developmental Delays and Autism--Riley's Story

by Jennifer Marino Kuiper

(If any of you know anyone who has a child with autism or developmental delays, please feel free to pass on this story of my experience with my son. There are a lot of people out there who need help when their child doesn't seem to be making the progress of other children.)

My son Riley was born on a glorious morning in May in 2004. He was perfect, though I did have a rough labor and delivery. He was such a good baby. He ate and slept with regularity, though he did despise laying flat on his back. I remember spending many nights checking on him to make sure he didn’t roll completely onto his stomach. I swear he smiled the day he was born. He always made eye contact and loved peek-a-boo. I didn’t realize there was a problem until he was closer to two. He never had any major illnesses, but he just did not talk at all. He could make sounds like ga-ga and ba-ba, but he never assigned a sound to a person or object; for example, he could make the sound da-da, but he wouldn’t call his dad that. It was completely random. Most people told me, “Oh, he’s a boy. Boys talk late.” But I wanted to be sure. I told the pediatrician at the next visit that he wasn’t talking yet. I thank God to this day that he ordered a speech evaluation. He could have said the same thing as everyone else, and since my experience I’ve heard from many people whose pediatricians told them to wait--what a mistake that would have been. We went for a speech evaluation and found out that at two, Riley’s speech was equivalent to an eleven-month old. The therapist referred us to Early Steps, and it was there that we realized there could be a larger issue at hand. Riley went through another speech evaluation at Early Steps and he did certainly qualify for state-funded speech therapy. The child psychologist who evaluated him mentioned wanting to do a psychological evaluation once he was receiving therapy to rule out a pervasive developmental disorder because in addition to his lack of speech, Riley had other tell-tale signs like watching things spin for long periods of time, obsessively opening and closing doors, and turning the lights on and off. I didn’t even know what a pervasive developmental disorder was at that time though. My mother, who was there and who has always been a super-supportive mom and grandma, said, “Do you mean autism?” That’s when we learned about autism spectrum disorders. I didn’t even realize there was a spectrum. I have a cousin who is autistic and I thought that was the face of autism. Boy, have I learned a lot since then. There are many faces of autism. After Riley’s evaluation that day, I was completely distraught. I cried and cried. I went online and tried to find as much information as I could. As luck would have it, I logged into my county’s school forum and found a recent post about autism workshops that would be held at a local community college the very next day. I responded to the post begging for more information and received a reply within hours. That was when I first encountered Dr. Brian Abrams. He reassured me that this was in no way a “death sentence” for my son and encouraged me to attend the workshops. I jumped on it. My mom and I attended the next day and it was like a wave of calm settled over me. I got to meet Dr. Abrams, whose son has Asperger’s and who himself has autism, and I met Riley’s future speech therapist group there and learned about CARD, PECS, the GFCF diet, and more. I found hope for my son.

Riley Kuiper. December 2012

A couple of weeks later I met with an autism support group for the first time. Everyone was so wonderful with me. They gave me the support I needed to soldier on to help my son. Armed with all kinds of information, I got right to work. I scheduled an appointment with the speech therapist and also enrolled Riley into a daycare. Within weeks Riley was saying his first words. I credit his speech therapist with finding his voice and his classmates with guiding his behavior. Once he broke through the wall, the speech kept coming and coming.   His speech therapist informed me that he made 15 months improvement over a period of 6 months. She no longer thought he needed speech, though she suggested he return in 6 months to be sure he was still improving. He stayed about the same and we’re due to go in again for another reevaluation.   Eventually we re-enrolled with speech at school because he wasn’t improving.  He needed to be taught how to speak.  He was not able to pick it up naturally like other kids. I know this is somewhat controversial in special needs circles, but my ex-husband and I did not go for an autism diagnosis in those early years.  It is now my biggest regret.  Even though in my heart I knew I wanted to pursue a diagnosis, I didn’t fight for one because I didn’t feel I had the support of family, friends, colleagues, his therapists, and his doctors.  The only people who thought I should pursue the diagnosis were my mom and the parents in the support group.  And they were right.  Everyone kept telling me he was doing so well and a label could cause his teachers and others to treat him differently.  I do know that this is a risk.  But as a parent I am his advocate for services he needs and I am also the one to inform others of his abilities, not just his disability.  We decided to get the services he needed privately.  This ended up being limited and a huge expense but it was worth the money to see our son improving everyday.  With a diagnosis he would have been eligible for more services and it would have been covered by the state or by insurance.  While I can’t change the past, I am able to help others advocate for their children.  So if you’re a parent going through a similar situation right now, get an evaluation done.  If there is a diagnosis of some kind, you will receive the services you need.  Without a diagnosis you don’t have as many options.

Finally, once Riley entered first grade he was still making improvements but it was obvious that his social skills were lacking and he needed more accommodations in the classroom in addition to being pulled out for speech twice a week.  His teacher encouraged us to have him tested, and this time everyone was onboard.  We had evaluations done the summer after first grade and he was diagnosed with autism.  This diagnosis opened up an array of services both at school and at our local Easter Seals.  He now receives speech therapy and occupational therapy twice a week in school and more occupational therapy at Easter Seals after school twice a week.  We will be starting social skills therapy using ABA with a behaviorist at Easter Seals in the coming months as well.  And when it comes time to take the statewide standardized test this year, he will have multiple accommodations because of his diagnosis and IEP including testing in a less crowded setting, extra time, repeated directions, and task reminders.  One day he may not need these accommodations and they can be removed, but in this era of high stakes testing it’s crucial for him to have them.  Students who do not pass the FCAT get retained in their current grade.  If Riley doesn’t pass, his teachers can put together a portfolio of his work showing that he is able to meet the standards so he can move on to fourth grade.  This is all thanks to his diagnosis and his IEP.

For those of you who are now going through this ordeal, there is hope! Do all of the research you can, talk to as many people knowledgeable in this field as you can, and most importantly, continue working with your child even after the therapy sessions are over. Learn all you can from the therapists and mimic what you see them do with your child. A half hour twice a week by itself is helpful, but if you could double, triple, or quadruple that yourself, do it. It is well worth your time and energy.

Riley and Jennifer Kuiper. December 2011

Riley Kuiper. Flagler Beach. December 2011

Joseph Parthemore - Update

Joseph at Wolfson Children's Hospital  (Image courtesy of the Parthemore family)

On Christmas Eve our Joseph Parthemore contracted pneumonia causing both of his lungs to collapse.  He was transported to Wolfson Children's Hospital in Jacksonville, FL.  Doctors discovered he developed respiratory syncytial virus (RSV), a certain characteristic of pneumonia.  Since arriving to Wolfson's he has been heavily sedated and on a respirator.

On December 27th, thankfully, an X-ray showed improvement in his left lung.

As of today, Joseph remains sedated with the breathing tube until the infection passes and he can once again breath on his own.   This is a very difficult time for his family, as Joseph's dad, Dan Parthemore said, "He does not wake up, so I'm not sure if he knows I am there. "

The little guy has missed Christmas, and his 3rd birthday is this Friday, January the 4th.  Please keep Joseph and his family in your thoughts and prayers.

(We are postponing our fundraising walk sponsored by Flagler Beach Montessori that was to be scheduled for the end of January until Joseph is better.)

To keep everyone informed of our progress, the latest update about our transition is that we will be launching our new website along with our  organization's new name within the next three weeks, so please be on the lookout!  Sorry for the wait.

2012 has been a very humbling and inspiring year with many accomplishments and we look  forward to making many more in 2013!

A little note about Alyssa, in Fall of this year she joined a cheerleading squad for children with disabilities.  Her stepmother, Amy Hagstrom says she just loves it.

Another note, I had mentioned a few months back that Love for Alyssa was among one of the 200 finalists up for one of the 50 prestigious spots for Critical Mass 2012.  I am thrilled to say that Love for Alyssa made the 50!  Here is a link to the 50 Critical Mass winners of 2012.

Also, please have a look at Love for Alyssa on Photo Philanthropy.  This is a wonderful organization that helps photographers connect with other non profits and showcases the work photographers have done for different organizations. feel free to facebook like and share with others!)

Lastly, please have a look at fotovisura. This is a great outlet that supports photography; allowing photographers to share all sorts of different projects with the rest of the photo community. feel free to facebook like and share with others!)


August's Exciting News

"Feeling Free"  2012

Thrilled to see that my work, Love for Alyssa has made the finalist cut for Critical Mass 2012.  It is an honor to be selected as one of the 200 finalists out of 756 talented entries from around the world.  This gives us a great opportunity to have more eyes see what we are all about.  Two hundred respected jurors in the photographic world will now decide the final 50 finalist.  Wish us luck!

In other news, we are regrouping from the summer and tackling the need for a new name for our organization.  The name Love for Alyssa will always remain the name of this project, for I will always have much love for Alyssa.  As we said before, now that our organization has grown with Jerry and Robert, we are in need of a name that suits us a unit and as a global brand.  This task of deciding a new name has not been easy.  I am hoping that any day, really soon, something great will pop into one of our minds. When this happens we will be able to launch our new website and move forward, so that things can continue to fall into place.

  It is pretty remarkable to think how far we have come and how much I have learned in a yr and half.  The journey thus far has been challenging yet rewarding.  It is all about staying the course, for I know nothing every comes easy.

In case you missed our latest news, we are now a 501c3 tax-deductible organization!

Please have a look at little Joseph's video down below if you haven't seen it yet.

CNN covers Love for Alyssa

Today is very exciting for us, CNN is featuring Love for Alyssa.  Much thanks and appreciation goes to CNN's   Brett Roegiers. CNN PHOTOS  has 12 images and an interview-



Update, Behind the Scenes, & Thank You's!

Hi All, This post is to get everyone up to speed as to where we are at this time, and to give you a peek at some of the very important people involved in this project.

Also, I would like to take a moment to thank these people so much, and to thank everyone who has thus far opened their hearts, which includes our sponsors, individual donors, anonymous donors, and to those lending a helping hand.  It is exciting to see the wheels in motion and the light ahead.

We are grateful for the outcome of support that has followed since the launch of this project in March.   In late May, in a meeting with our lawyer Dennis Bayer we went over the necessary logistics in preparation to move forward.  Meaning soon we will be filing for our 501c3 status.

Following that meeting, we met at the Hollingsworth Gallery for a final decision on the count of images that will be in the exhibition.  The original plan was to have 15 images, but we have now added to that number, making it a total of 20.  There will be one more 30x40, and 4 images at 20x30. With these five added images, we now have a total of 6 images left to be sponsored for.  The cost to sponsor an image will remain at $200.

I would like to thank Piedmont Plastics whom from day one was on board with helping with this exhibition.  Their company, whose corporate location is in North Carolina, generously supports this project by fully sponsoring all of the glass needed for this exhibition.  A special thanks goes to Mr. Ted Isbell for making that happen.

One hand has crossed over another through this journey.  Thanks to JJ Graham, owner of the Hollingsworth Gallery, he directed me to speak with photographer A.J. Neste.  A.J. has no idea how grateful I am to him because he connected me to my missing link, my lawyer Dennis Bayer.  I couldn't proceed with this vision without this key person.  Thank you A.J.!

A.J. is not only an incredible surf photographer, but he also has a big heart. He is the director for the "Voice " program that is under the Florida EndowmentFoundation.  This is a program that not only teaches kids to photograph, but also helps them gain knowledge to the business aspects of the profession.

So, let me start by showing you who some very special/important people are...

dennis bayer
dennis bayer

image by Jerry Englehart Jr.

This is Dennis Bayer our lawyer.  We can't begin to thank him enough for believing in what we are doing.  He is an amazing person!  I wanted to share this wonderful article written in the Daytona News Journal  back in February about his dedication to our community.  Please check out the link!

dennis bayer's office - flagler beach, fl
dennis bayer's office - flagler beach, fl

(image I shot of Dennis's office that over looks Flagler Beach)

susan kates
susan kates

This is paralegal, Suasn Kates for the Law Office of Dennis Bayer.  I appreciate Susan so much.  She is a friend who has been so extremely helpful with everything, and a shoulder to lean on with my 1,000 questions.

j.j. grahm
j.j. grahm

J.J Graham

mercedez & gab
mercedez & gab

Mercedez & Gabriel

 Artist/ Painter, JJ Graham and life partner, photographer Mercedez Buzbee McCartney (shown above with their son Gabriel at my son's recent birthday party), are the owners of the Hollingsworth Gallery.  A friend had told me about the gallery, and upon my first visit I was floored by what they had created in our community.  It is a special place, one that does not exists in too many places.  I approached them immediately about my ideas, and I am thankful for their belief in me.  We quickly became great friends.

JJ's clear vision has succeeded by creating a place for contemporary artists to nurture their creativity.  One thing that I find most important, is having a community of peers that encourage one another and leave the silliness of competitiveness behind at the door.  When you are surrounded by other artists that feel the same that you do, it inspires you to challenge yourself in your own work.

No matter where you live, I encourage all artists of every medium to submit their work for review for exhibition at Hollingsworth.  The space is extraordinary, and they have expanded recently with the opening of their new gallery SECCA Tree Studios two doors down.  SECCA also includes artist studios for rental space, though I believe they are all reserved at this time.

In between these two galleries is a separate space for painters; those that are experienced artists and for those longing to learn.  Believe when I say, JJ is the person you would want to learn from!  Classes are available for adults and children.  There are  great summer classes available for children.  If you would like to inquire, see the link and call 386-871-9546.

jerry englehart
jerry englehart

This is my long time dear friend, and talented colleague, photographer Jerry Englehart Jr.  Jerry at this time attends Western Kentucky University studying photojournalism.  Jerry and I push each other. His opinion I trust most.

Jerry is great technically as well, and he was the one who implemented my vision for this site.

It was great that he was down recently and was able to attend the latest meeting with Dennis.

With barely anytime left from a full day of events.  Jerry and I left to meet with Alyssa.  We chased what little light we had left, so that Jerry could catch a quick video glimpse of her.  That will be to come.

delynn maples
delynn maples

This beautiful girl is Delynn Maples, Vice President of LFA.  Delynn is my right hand.  She is someone I can not thank enough.  I thank her for believing in me and being such a vital part of making everything happen.  Delynn has just moved to Washington State which means now we are going Skype, a familiar way that many companies work in today's world.

And, though we just spoke an hour ago, life is not the same without her and her family here.  I miss them so much already, and it's only been a week or so.  LOVE YOU Delynn!!!

I also would like to thank Alison Wynkoop Vanhoutte our secretary.  We appreciate you so much.  I've known Alison since moving to this area 6 years ago.  She is good people.  Her daughter Samantha, has always been a great little model for my personal work.

A couple of weeks ago, I met for the first time, Ms. Jennifer Kuiper, a teacher at Flagler Highschool.  Jennifer contacted me a few months ago willing to really help make a difference.  I am so impressed with the person she is, and extremely grateful to her for wanting to dive right in.  We will be working together on an upcoming fundraiser.  Thank you Jennifer!

Having only contacted a handful of people who had already known what I was trying to do, the word of mouth has gotten us this far.  Please friends continue to spread the word.  Feel free to contact Love for Alyssa if you would like to take part.

I will continue to update you all as we progress.  I never mentioned this before, but I have had many images set aside that I never plan on posting.  They are images I wish to keep until final edit, so that there will be some element of surprise come exhibition time.

Thank you all for your support, and please continue to spread the word!

Water Park

Alyssa & Alexxis
Alyssa & Alexxis
Alyssa, Alexxis, & London
Alyssa, Alexxis, & London
Alyssa & Alexxis
Alyssa & Alexxis
Alyssa loving the water
Alyssa loving the water

A quick update to let everyone know that things are moving along swimmingly.  We are very pleased at where we are at this point.  Everyday there has been something new, and exciting occurring.  We are grateful to everyone who has reached out with their support, ideas, and connections.  Please continue to spread the word!

Palm Coast, FL Spreading The Word

Just would like to thank The Palm Coast Observer, and to Shanna Fortier for the nice piece that they did covering 'Love for Alyssa'.  Please have a look if you haven't seen it.

'Love for Alyssa' in the Palm Coast Observer
'Love for Alyssa' in the Palm Coast Observer

click here

Also, I would like to thank fellow WordPress blogger Camille, at Baby Pickel, for doing a nice post about 'LFA' on their site.  Baby Pickel is a local organization that gives back to mothers in need. 

Baby Pickel blog post for Love for Alyssa

Baby Pickel blog post for Love for Alyssa

Thank you for your support!

In the Pool

Alyssa-silly face
Alyssa-silly face
Alyssa- warming hearts easily
Alyssa- warming hearts easily
Alexxis & Duane- Alexxis's Birthday
Alexxis & Duane- Alexxis's Birthday

Here is Alyssa warming hearts, and making friends so easily.  I remember we decided to go into the hot tub, and I don't even think I had gotten all the way in yet, and she had already made an instant connection with these girls.  These images show her playfulness and sweetness.

I also love this picture of Duane holding Alexxis, we were at a hotel in Daytona Beach celebrating Alexxis's birthday.  I admire this look that I see from Duane all the time.  His love for these girls shows through so much.  This is a look you will so often see, as I do.

Introduction To Alyssa


Thought I should share with you the first time my camera clicked this beautiful face.  I had stopped by her classroom the day before just to meet her without my camera.  All the children were napping when I came in, though Alyssa was wide awake.  I went over and whispered, "How nice it is to meet you!" I immediately got what others had said, because she certainly 'had me' from the first hello.


The following morning I came in and there she was laying on the floor about to play with a container of "my little ponies."  This was my 2nd frame.


Alyssa Jadyn Hagstrom was born February 14th, 2004, at Ormond Beach Memorial Hospital, in Ormond Beach, FL.  At birth she was diagnosed with a condition called  Arthrogryposis.  When she was delivered her legs, arms, and wrists were in a stiff, bent, inward position that would not allow for movement. 

At two days old, all her limbs and wrists were stretched as far as possible to aim towards a more normal position; including cutting the right hamstring, for casts to set into place. 


Within her first year of life, she had two major surgeries.  Alyssa's feet were  extremely clubbed. They were stuck in a position like a ballerina dancing in her toe shoes.  In order to gain a chance of normalcy, her Achilles tendons were cut on both feet.  Her left foot sustained even more extreme measures because of the crooked position it was in.  Surgeons had to remove her foot at the ankle bone by conducting what they call a "bone rotation,"  by cutting the bone in two places to twist and reattach into place.  Visibly seen metal rods held her foot together for six months.

This act of stretching her limbs into position to be placed in casts had to be repeated.  Her condition causes all of her joints to be contracted, causing her never to be able to have the muscle to control them. 

Today Alyssa has no use of her legs, arms, and limited use of her fingers.  This summer she may be  undergoing surgery for an elbow release.  This possibility would give her a bit of much-needed independence. Her arm would then be able to rest on the table, and she could bend down to reach towards her fork or spoon to eat.


This is an earlier photo as well, taken back when she was receiving therapy, but at this time she is not. 

 I am very thankful to Duane for letting me into their life in such an intimate way.  I've been able to capture some beautiful images along this journey.   I am very proud of this work.  The possibilities the impact of this project could have on her life is a very overwhelming thought.

I've gone to the extent of creating this corporation to follow through with what I believe is possible.  Alyssa has no idea what she has done for me.  In her short life she has been through many disappointments and her spirit has never darkened.  She is worth fighting for. 

 I believe in the good of people.  The idea of Love For Alyssa is to create a 'movement'; for people to be inspired by the process of what coming together can create.  The art of photography is the center piece in which allows us to connect.  

This change will have a significant impact on her future.  Please come be a part of something so wonderful.