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Jack's Story - "It was an answer to our prayers."

As written by Liz, mother (2009)

Autism is a word that I have feared since I noticed Jack at 12 months was not talking or showing any signs of receptive or expressive communication. He had a blank stare to match his blank eyes.

Jack had been a seemingly normal baby. He slept and ate, sometimes he was fussy and sometimes he was content. We were thrilled when he was born five years ago. He was a wonderful addition to our 2-year-old daughter. My husband, who is Jack's namesake, was ecstatic to have a little boy. He began to dream of football and playing catch where I began to dream of that special bond between a mother and her son.

In addition to Jack's "blankness" came some other tendencies - rocking, some flapping, and frustrated temper tantrums. We visited our pediatrician who said not to worry yet, but gave us some resources. We called immediately.


Needless to say, none of these therapies or clinics were helpful at all. They threw us a few hours of therapy a week and sometimes they would not show up. Meanwhile, Jack was slipping away, along with our dreams of little league and elementary school and friends. Now, we were facing an unknown future of therapy and constant supervision.

I almost mourned that Jack would not have a relationship with his older sister and younger brother (we had added another son 14 months younger than Jack) who craved a friendship and bond with their brother. Small things like stroller walks around the block, trips to the grocery store, the park, and his sister's school carnival were disasters. I called my husband at home while we were on a vacation at the beach, bawling and telling him that we might as well come home. My husband and I would take turns going places with our daughter. It was too much to go places as a family. I would see families on outings together and I was jealous.

Finally, one night before Jack's three-year well checkup with his pediatrician, I broke down to my husband. It had been almost two years of speech and occupational therapy and Jack still seemed like a baby to me and he was going nowhere. A psychologist had diagnosed Jack at 2-years-old with a pervasive development disorder. We still could not get the therapy and help he needed. I did not know what to do or where to turn. I was running into brick wall after brick wall. This was my son and I was not going to stay at mediocrity.

At his three-year well checkup, I explained my fears to his pediatrician who saw Jack running back and forth, back and forth in his office. He told me about Quest Kids and Applied Behavioral Analysis (ABA). He brought out his laptop and showed me everything. I went home and called Quest Kids immediately. The director answered the phone and I spilled everything to her. It was an answer to prayer. She said all the right things. There was no hemming or hawing and no "let me see...ummm....", etc. I was so relieved that someone finally made sense to me.

My heart said this was the place for Jack. We took out a home equity line on our house and started Jack with 20 hours a week of ABA therapy. By the end of that first week, Jack would sit in a chair, without being strapped in, and work at a table for a token reward. By the end of the first month, he could match colors and pictures, make better eye contact and added words to his vocabulary. After 6 months, he was potty trained, had two-word phrases and would not tantrum when he did not get his way.

Through all of this, every therapist knew his name, knew who he was and knew me. They were all there if I needed them. I always had millions of questions. His lead therapist has been to my house, to the park and to Publix with us.

It has now been two years that Jack has been at Quest Kids. This year, he has been in a regular preschool class three times a week and we look forward to Pre-K next year. He has spontaneous conversation, plays (on and off) with his sister and brother and can play some pretend. He even played flag football at the YMCA.

The future is still unknown. Will Jack ever attend a sleepover? Will he be able to graduate? Will Jack be able to get a job, live on his own, get married? These are some of the goals that you take for granted. We don't. Every word, every appropriate laugh, song, look, and play is a milestone. The future may be unknown, but it is much brighter and we would never have been able to meet these milestones without Quest.

 

Noah's Story - "The unending 'why' questions, the 'I love you daddy' times, and everything in between… it’s priceless."

As written by Darrin, father (2010)

I remember the first time we walked into Quest. It seems like just yesterday. We had no idea the incredible journey we were about to embark on with our family… Which takes me back to the days when we were trying to start our family. My wife and I were married for a number of years before we realized we were not able to get pregnant on our own. So we turned to a fertility specialist. It took a couple of tries until we were finally successful, but after only a short time we lost our little baby.

That was one of the most devastating things we have ever had to go through in our lives. That is what turned us toward adoption. My wife always had a heart for adoption, but I was the one always dragging my feet. After losing our baby, I was ready to look into adoption.

Which brings me to the first day we saw our baby boy. We got to bring Noah home from the hospital when we was just 3 days old. We couldn’t believe we were parents. For months we would stay up late just watching him sleep. We couldn’t believe he was our baby. Everything seemed perfect. We couldn’t have been happier. As Noah grew, my wife, who is an incredible mom, noticed that he was hitting certain benchmarks in his development, but not others. Ashley wanted to get him help, but once again, I was dragging my feet. I kept thinking, he will be just fine. I even had the support of our pediatricians, who told us, “Just wait – he’ll be fine. He just needs time to grow out of it.” Little did we know that was the one thing we didn’t have much of: “TIME.” Fortunately for all of us, especially my son, my wife didn’t listen to any of us. She kept pushing for him.

The first day we walked into Quest, we had no idea what we were doing. We had gone to a few places to get Noah help. None of the places were a right fit for us. It was like God kept telling us to keep looking. Ashley sat down at the computer one day and just started praying. She jumped online and typed in “ABA therapy.” Quest was one of the places that popped up. Well, we ended up at Quest. We met a wonderful lady named Lynn, who sat and talked with us for a few minutes and then asked if we had the time to meet with the director of the program. She called upstairs and within a few minutes we met with one of the most incredible ladies we’ve met along this journey, Ansley. She sat and talked with us for what seemed like hours. I’m sure it felt like hours for her, too. We asked every question we could think to ask her. She answered all of them. She put a program together for us that fit our budget. We remember walking out of that place thinking, “This has got to be the place that God has picked for us.” Man, were we right.

The first day of Noah’s therapy was also the first day we met Meig and Sheldon. I remember walking into the room and seeing Ashley and Noah sitting on the floor working with Meig and Sheldon. Later that night Ashley told me just how tough that first session was. She told me that Noah went through the worst tantrum that we had ever seen, but Meig and Sheldon just worked right through it. I actually attended many of the sessions and got to see Meig work her magic on my baby boy. Meig and all the therapists at Quest are incredibly talented – they are like “baby whisperers.” They see things that we don’t in our kids. Meig was able to help Noah learn to have conversations and ask questions. She became more than a therapist for us; she became part of our family. And for the next six months, we saw incredible strides in our son. Meig also taught Ashley and I how to work with Noah at home, which tripled his therapy time. Every moment became a teaching opportunity. So instead of just sitting in a room for therapy, every place became his classroom. Meig even met us at Target to help us with real life application… I mean who does that? Well, Meig and Quest did that for us.

When we were first getting started with finding help for Noah, we had him assessed by a neurologist. The coolest part of this story was that this doctor was not one of Noah’s biggest fans. She basically told us that there wasn’t much hope for our son and his future. And once again, my amazing wife would not accept that as an answer. After six months of therapy at Quest with Meig, that same doctor couldn’t believe the changes in Noah. In fact on his last visit with her, Noah proceeded to say hello to her using her name without prompting from either of us. We all were amazed. This was the same kid who months before couldn’t sit still and answer simple questions. Now he was having a small conversation with her.

Noah now attends Quest Kids Academy. This will be his kindergarten year at school. In the first two weeks, we’ve gotten more information from his teachers about him and his progress than we received in one year in the public school system. I’m not saying this to down play the public school. I’m just saying the talent and skill levels of the therapists and the program that’s been put in place at Quest are unmatched. We are incredibly excited when we think how far he has come in six months with the ABA training he received for just a few hours a week. Now he will be receiving a full day of ABA training five days a week. The thought of that has given us something we haven’t had in awhile: HOPE. One of the mottos that Ansley has at Quest is that if your child is not learning something in a short amount of time, it’s not that there is something wrong with your child; it’s that they are not teaching your child in the way they can learn. So they assess their methods of teaching often and change accordingly. They customize the plan according to your child, and they work with you on the things that work and analyze the things that don’t work for your child.

I remember when this whole thing was getting started. I thought to myself, I wish my son could tell me, “I love you daddy.” That may sound selfish, but to me that meant my son was no longer trapped within himself. He was free to think and feel on his own. Well my son tells me that all the time now, and I don’t take any of those times for granted. Looking back on all this, it’s funny to see how God works. I would have never picked any of this for our family. But without this happening to us, we would not have been as close to our kids. We don’t even take the little things for granted… the unending “why” questions, the “I love you daddy” times, and everything in between… it’s priceless.

This has been a tough journey, but it’s awesome to see how God has given some the ability and skill to battle such a formidable foe – autism – with incredible success. I thank God for giving us the people at Quest for giving us back our baby boy. Thanks.

 

Jonathan's Story - "I can’t imagine where he would be without these services."

As written by Robyn, mother (2011)

My story began almost 6 years ago, when Jonathan was born. He was my first child. He was cute and laughed a lot. The shift from marketing professional to stay-at-home mom was quite swift. As time went by, my friends’ kids were crawling. Jonathan wasn’t but he was really chubby so it didn’t worry me. Then, they started walking. Some of my friends kept asking me about it – but our doctor said let’s wait until 18 months. I was okay with that. With being patient.

At 18 months, Jonathan still wasn’t walking, so we sought out help from a federally funded program called Early Steps. It turned out Jonathan was speech delayed and physically delayed. We had no idea. No one mentioned any specific disability and we didn’t have the courage to ask. The only label they gave him was “delayed.”


I remember leaving that office upset and in shock. It hurt. It felt like someone wringing my heart out. It never occurred to me in all my family planning that someone with a master’s degree and my husband, a PhD, could have a developmentally delayed child.

He ended up having speech, physical, occupational and oral motor therapies. I never thought we would do these therapies for more than a year. Then two years. During that time, my friends were having play dates and we were doing therapy at home. It was very isolating.

By age 3, Jonathan was tested by the school system and we continued on this very emotional journey. The testing team said he had a foot in both worlds, meaning the autism world and I guess the regular or typical world. He had some social skills with adults but not with peers. His cognition was much higher than his expressive language. They wanted to put him into an autism class for six months and then place him in an exceptional education class. We were completely against this because my son was not what you would think of as “classically autistic.” He had many social and personable qualities.

After many tears, meetings, frustration and class viewings, he was placed in the exceptional education class in a neighborhood school. He attended for six weeks and did awesome! His first week of school, he even said “mama” for the first time. It was so amazing. Although I believed his progress was great, the teacher complained about Jonathan’s differences. He bit a few kids out of frustration and required one-on-one assistance so he wouldn’t play with the faucet and the doors.

At that time, I was taking a speech class hosted by the county. I met other parents that had challenges. Although Jonathan exhibited repetitive behaviors, like opening and closing doors, switching lights on and off and pressing buttons on musical toys over and over again, I still believed there were other parents dealing with situations harder than mine. But I also learned that other teachers embraced the differences of these children; that wasn’t the case with Jonathan, which made me more unsettled about his placement.

As Jonathan got older, the differences between him and his typical peers became more apparent. That summer we saw a doctor who gave him the label of PDD, a diagnosis on the autism spectrum. Although we weren’t happy that Jonathan was different, we expected this diagnosis, which quite frankly was better than other things I could imagine.

The thing is – there is no manual for autism. Every child has different issues. Some sensory. Some verbal. Some behavior. Combinations of them. There is a saying: “When you have met one child with autism, you have met one child with autism.” That pretty much sums it up.

The next year, we moved Jonathan from our neighborhood school to a charter school that serves children with autism. The level of service was unprecedented. Yet, for as much as he was improving he still needed help. I was still struggling with the thought of Jonathan biting and not playing appropriately. While his typical peers would drive a toy car or build blocks, Jonathan would only watch a video or play with a musical toy. This is when I started realizing that Jonathan’s delays weren’t temporary and that autism was going to be a life long disability. It’s not that he couldn’t catch up but he would have to learn how to overcome certain situations.

So at the recommendation of a friend, I called Quest. They specialize in ABA, or Applied Behavior Analysis. This therapy helps children on the autism spectrum improve in all kinds of developmental milestones – not just negative behaviors. Why Quest? It was my opinion that they WERE and ARE the market leader in ABA. Ansley, the director of Quest Kids, and Nona, a lead therapist came to our house to do an intake. They quickly saw how Jonathan needed assistance with basic skills, like playing. We started with just two hours of therapy a week.

Last February, Jonathan's school told us he wasn't yet reaching his full potential and needed more one-to-one therapy, which made me shocked and angry. But, we got Ansley on board and increased his ABA to nine hours. He immediately began making progress. We increased his hours again over the summer; every time we increased them his rate of improvement increased. He learned to draw lines and eat with utensils, and he began saying the “b” and “p” sounds – 18-month old skills that he finally learned at 4 years old.

This past summer, we started Verbal ABA… WOW! This made Jonathan start talking, not just saying sounds, for the first time. He was trying before but no one could understand him but me. A mom even texted me from the hallway at Quest saying, “I heard Jonathan say ‘eat banana,’ and I understood what he said!” Other people understanding him is a big deal. That’s the start of his independence; on him not relying on me so much for everything. Now, we are up to 24 hours of ABA (not including speech) and Jonathan has four therapists: Nona, Hunter, Danielle and Natalie. He loves them all and will say their names.

Every small accomplishment is BIG at our house. Tolerating a haircut. Talking to his sister. Talking to other little boys. Saying two- and three-word sentences. New vocabulary words – this week he said “highway” and pointed to I-4 and said “gas” as we passed the gas station. They are all beautiful. Each new thing helps erase the difficulty of the day.

We relish every little accomplishment. And, Jonathan’s four therapists do too! They love him. They tell me stories about things he does and how much they savor his accomplishments too. Yesterday, one of his therapists shared that he kissed the boy next to him in circle time and she almost cried. So you can see they are part of our family in a sense.

Quest is SO important in our life. The people. Its services. The support. I can’t imagine where he would be without these services. I am thankful for the things they help give us –the normal things like washing hands and saying hello. Every day when I walk away from this building I feel good. I KNOW Jonathan is in a safe place. I KNOW that everybody he is with is committed to making him progress. And I am comforted by the community of parents inside that building that provide support and laughter. Thank you.

 
 
 

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