Love For Alyssa

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.

~JK

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