Family Stories

I am writing on behalf of the Birth to Three program in Cheshire and the wonderful and dedicated staff. Four years ago my husband Don and I were welcoming our third daughter Finley into our family. She was joining her two older sisters Delaini and Bailie and was instantly loved the moment we saw her beautiful face.

Adjusting to three children was a bit easy compared to making the jump from one to two children, I guess in part because you learn to operate juggling multiple personalities, schedules, and diapers from the years before. My husband Don is a detective with the Cheshire Police Department and I had just left my teaching position as a Pre K teacher to stay home and support my daughters as they entered school.

Life was typical, crazy, but full of excitement as we became a family of 5. Finley developed exactly the way every online resource had said she should. She rolled over at 6 months, played peak a boo, laughed at her sisters, slept, ate, basically was a typical child. She had the most beautiful red hair and we said she was as wild as the wind-often exhibiting fierce and brave attributes that we related to this fiery hair.

Finley loved to press limits as she got older…she could ride a bike at 18 months old peddling backwards and forward, she climbed EVERYTHING…I mean everything with no fear or sense of consequence, she often looked for ways to unlock our back door to escape outside often using play brooms or chairs to get to the lock. We found her on our kitchen island, scaling the outside of our staircase, and the top of our swing set without a care in the world. It was funny…until it wasn’t…

Just before her second birthday Finley started to exhibit great frustration with communicating. Her skill set matched her sisters with her large motor capabilities yet her communication skills did not allow her to express how she was feeling. My free spirit began to pull her hair out when she couldn’t communicate her emotions. She would throw herself to the ground in fits of rage, bite herself when I couldn’t understand what she wanted, scream no over and over again, and basically withdrew from our family. All of my years teaching and I could not help my daughter and it was not only devastating but SCARY!

Finley didn’t relate to children younger than herself, she would push or kick at younger children in her space. She only related to children older than herself, often identifying with their activities based on her own motor skills that matched theirs. I often went into social settings full of anxiety not knowing how the day would go. Would Finley throw a fit at the library, would she hit our best friend’s son who was younger when we had dinner plans, would she scream at play center when it was time to clean up, would she hit her sisters in frustration again??? All these what ifs were an alienating feeling. My husband and I began to fear that we were failing our daughter.

It was at this time that Donna Notti and the Cheshire Birth to Three team came into our life. That one phone call saved my daughter. Our relationship with Birth to Three began just before Finley’s 2nd birthday. I will never forget the feeling I had when Donna and Barbara came over to evaluate and meet Finley. I was so scared and nervous not knowing what I was going to hear about my daughter. But with great relief Donna made me feel at ease instantly because she reminded me that what ever was going on, we were not alone.

After a series of tests and just getting to know Finley, it was determined that Finley indeed had a speech delay with concerns with her self regulation with her emotions. A series of home and parent center visits and then at 3 enrollement in the Darcy Preschool Program helped Finley identify and handle her emotions while assisting her with speech. My husband and I were taught strategies how to help curve her frustrations and how to parent a child with Finley’s needs. It was with these support bases that we began to see glimmers of hope. Finley was again growing, but this time with new tools to help her fine tune who she was in a social and emotional age appropriate approach.

Birth to Three is much more than just identifying children with educational delays. What is not really discussed or focused on is how Birth to Three is beneficial for the parents of the students with such delays. It is their support and friendship that get parents though the most emotionally challenging times as a parent. If you have not had to make the phone call asking for help for your child consider yourself blessed, but remember that there are many parents who don’t have such luxury.
Our story has a happy ending although our journey is a continuous flow. Finley is currently in the Smart Start program at Darcey School. She receives weekly speech support and will be entering Kindergarten next fall. She is a wondrous , adventurous, almost 5 year old who wants to be a zoologist mountain climber out in Wyoming or the safari of Africa. She loves big cats, anything leopard print, and outside anything. With support she has learned how to identify her feelings and express how she is feeling and what she needs. We see very little fits, she has friends, she no longer picks on children younger than herself. She identifies as a friend and finally with kids her own age. She craves snuggles and love, communicates her big interests, is kind, funny, sensitive, curious, brave, and just about everything and more that we have dreamed for her.

She is all of these things because we received support during the important developmental years. She is this because we learned how to parent her. She is this because she was loved by educators who were trained to help children like her, who know the warning sings and have approaches to help aid her needs. She is like this because we weren’t ashamed to call and get her help.

Now imagine if there was no one to call….

Finley’s story is one of success. I am prideful that I knew that there is no shame in getting my child help. But there are many more parents who face unseen challenges and roads ahead. Parents who need encouragement or just a plain hug. Parents who not only need professional advice but also friendly and supportive advice. I have seen these parents walk into the parent center. I have seen the uncertainty in their faces. I know their anxiety bringing their child out for the first time in a social setting-will they be ok?

Please don’t leave these parents in a position where they have no where to turn. Please continue to support our Birth to Three programs so more children like Finely can become success stories and more parents like my husband and myself can become better parents. Because every child is worth it and we owe them that!

As the holiday season approaches, I want to show recognition and appreciation for a very important and often overlooked program, Birth to 3. Our family has received services from the SEED Birth to Three program through Education Connection in Litchfield for a year. The program has helped our son, Matthew, and our family in countless ways. When Matthew was born, he was in the NICU for a few days. When he was three months old, I referred Matthew to the SEED program because he wasn’t visually tracking. The program responded in a timely fashion, scheduled based on family needs and arranged for appropriate therapists to be at the evaluation. Sue Malone, Physical Therapist and Maureen Buckley, Teacher came to evaluate him and found him not eligible. They were both professional, caring, reassuring and helpful. They left us with some valuable tips and developmental information. Matthew was re-referred and found eligible in December, 2011. His team of interventionists have been incredibly hard-working, informative, reassuring, supportive, professional and caring with our son and our family. In the spring, Matthew was not progressing as the program had hoped. They took immediate action, increased his services and referred us to an excellent developmental pediatrician. The program manager, Janae Peluso, contacted me personally and offered support and information. Janae has continued to be supportive to us by responding to any questions or concerns promptly. Janae extended her own time and participated in a team meeting/home visit. Janae has checked in on the family and provided an Occupational Therapy consult based on feeding concerns.

Our service coordinator, Sue Malone, is an excellent physical therapist, an utmost professional and an invaluable resource on every level. Sue has been completely honest with us about Matthew’s needs, but she has also been sensitive to our emotions and supportive during difficult times. Sue has supervised at least monthly, led team meetings, organized our paperwork beautifully and communicated effectively with all of the therapists and medical professionals involved. Most importantly, Sue has taken extra time to respond to any of our phone calls, questions or concerns and she has stayed as long as necessary to complete IFSPs, visits and evaluations.
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Our team of interventionists includes Sarah Findley, speech-language pathologist; Rebecca Couillard, teacher and Deborah Morgan, Physical Therapy Assistant. Sarah Findley is extremely professional and knowledgeable. As a fellow speech therapist, she has always communicated clearly and effectively to me, always remaining respectful of my role as a mother and therapist. She has offered unique suggestions and advice to my husband and I. Sarah’s visits to Matthew’s daycare have been invaluable as she has strived to improve his receptive language and communication skills with peers and adults. Initially, Matthew refused to make eye contact with Sarah. After working with him for months on responding to his name and following one-and two-step directions, Matthew has showed tremendous gains. He recently demonstrated the ability to follow a two-step related command, identify action in pictures, and respond to simple wh-questions on a standardized test.
Rebecca Couillard is working toward her BCBA and has been essential as a resource for behavior concerns and developmental information. She has helped implement play techniques to enhance Matthew’s social communication skills. Rebecca has always responded to our questions regarding any concerning behaviors and constantly gives us ideas to redirect him. Rebecca consistently offers very practical, manageable strategies for us to incorporate on a daily basis.

Deborah (Debi) Morgan has seen Matthew the longest on a consistent basis. She has watched him grow and progress. At first, Matthew rolled his eyes at Debi or didn’t respond. During the past few sessions I observed, Matthew was laughing with her hysterically, enjoying every minute as Debi pushed him to achieve more challenging motor and communication skills. As a PTA, Debi demonstrates a solid knowledge of all the motor, balance and coordination skills Matthew needs, with the added benefit of a background in personal-social skills. Debi has provided an assortment of fun motor activities for us to implement and for the school to carryover, as well as strategies to address any communication or behavior concerns.

One of Matthew’s therapists recently referred to Matthew as the “model early intervention” child. Without intervention, I don’t know how he would be progressing. With intervention, he has developed the following skills: in less than 4 months, Matthew went from not walking and barely talking to walking; running; using 400 new words; combining 2-3 words; identifying and labeling all of his letters, letter sounds and numbers; counting to 14 and backwards from 10; identifying all of his shapes, colors and opposites; and, most importantly, learning how to socialize and interact more effectively. While I give my husband, Jim and, of course, Matthew, most of the credit for these new skills and hard work, I cannot dismiss the incredible impact the SEED program has made on our lives. I hope the program will thrive so they can continue to work and make such incredible differences in families’ lives.

Our son Wyatt was fortunate enough to have recently completed years of services with an incredible Birth-To-Three team. Wyatt began receiving services in 2009. The level of services and the amount of people we worked with increased dramatically in February of 2011 when Wyatt was diagnosed with being on the Autism Spectrum. Soon after, he was also diagnosed with Fragile X Syndrome.
Our family and our home became hosts to a special group of PTs, Psychologists, STs, OTs, DTs, and BCBAs five days a week all through 2011. It goes without saying that these services ramped up at what was a very painful and difficult time for our family. Wyatt was withdrawing into himself and every day we ached at how much of a struggle his life had become. The one light piercing the darkness was the incredible team of professionals who worked tirelessly with him and with us.

Every single person on our team worked tirelessly to help find a way to help Wyatt learn. The approach always was not to make Wyatt communicate and learn the way we do, but to find out how he was able to communicate and learn and adapt to that. It was clear that these people were not going through the motions, or just doing a job. They loved Wyatt, worked tirelessly with him and supported not just him, but us also. They rejoiced at his milestones, never gave up on him, and gave us hope about the future. Equally important, the B23 Team was so helpful during our dealings with the Ansonia School System as we prepared for Wyatt to turn 3 years old. Thanks to their tireless efforts we had an incredible transition from B23 to ACES school in North Haven where Wyatt has been for the last month.

We strongly feel that the work this team did laid a foundation that will make any continued progress by Wyatt possible. This team gave him a shot at living a fulfilling life. They were here for him and for us in our darkest hours and words cannot fully express what they have meant to our family.

Katy Lilly (OT) was our coordinator and was instrumental in putting together our extraordinary team. She has been in Wyatt’s life since he was a year old. The other members of our incredible group include: Keri Magraty (PT), Nicole Krause (DT), Lisa Bedard (ST), Alison (Artale) Rider (DT), Carmelia Cassano (Psych), Liz Nulty (BCBA), Leslie Monahan (PT), April (Innacell) Silverman (DT), Annie Brooks (DT), and Carla Devito (ST). We love all of these women who helped us reach our son while allowing him to take some control of his universe. The B23 program is so important and it is a credit to that program that such caring and dedicated professionals are there to make a monumental difference in the lives of children and their families in Connecticut. We will never forget them.

Sorry it has taken me so long to sit down and write this to you all.

I don’t think I could ever thank any of you enough for everything you have done for our family. We had always noticed Soleil was behind. She never met a single developmental goal on time, even in utero. A few months after she was born, and was falling further and further behind we were concerned. By the time she was one and still very much like a 4 month old, worry had truly set in. We knew something was wrong with our little girl, but we had no idea what was wrong, or how to help her. We saw our beautiful, little girl trapped in her own body. We knew she was in there, but we didn’t have the first clue how to get her out. It looked like she was slipping away, getting further and further into her own mind, punctuated with bursts of recognition. Those were the moments that gave us hope, and made us believe in her. We knew she wanted to communicate with us, but she didn’t know how. We knew she wanted to engage a world that seemed to make no sense to her, yet she continued to try. Watching her try and being unable to communicate and the frustration it caused in her, was heart breaking.

One of the hardest moments, for me as her mother, came one day when she was trying to engage another little girl. Soleil was a little over one year old, and the little girl she was trying to engage was just a little over two years old. The little girl, Isabella, asked Soleil if she wanted to play, Soleil, in her echolalic fashion repeated the question to Isabella, who replied, “Ok, c’mon.” Soleil, was happy, and repeated, “Ok, c’mon.” This confused Isabella a bit, but she shrugged it off, and started to run toward the little play house in her yard. Soleil, having next to no body awareness at that point, tried to run with her, but just kept falling down. When Soleil finally made it over to Isabella, she was asked, “Do you want to play with my play house?” Soleil, repeated the question back to Isabella, who was now trying to figure out if Soleil was being serious, or just mocking her. After about 5 more minutes of Soleil just repeating everything Isabella had said, despite me and Isabella’s mother trying to translate for Soleil, Isabella had had enough, and run off. Soleil started to cry, because she clearly couldn’t figure out what had happened. She just latched onto me while sobbing, “It’s ok, Soleil.” which was what she called Ryan and I, at the time. I started to tear up as I carried her in the house. It was soon after, that her pediatrician, God bless him, said that this incident, along with all the other host of symptoms she was exhibiting, still not eating solid food, not playing with toys, no grasp on language, limited eye contact and facial recognition, aversion to certain textures, walking in patterns, repeating words and phrases, sometimes for hours, and so on, that he was becoming very concerned. He felt that she needed intervention services immediately to prevent her from slipping further away. We were so blessed that he was so willing to listen and took her symptoms seriously. We were referred to Eastconn, who came and did Soleil’s evaluation. After just a few hours with her, they were concerned that she needed more help then they could offer. Enter BEACON.

BEACON is such an appropriate name for the company you work for, because it truly was. You folks were such a beacon of light and hope. When we met with Christine, we liked her immediately, and were filled with confidence in her and her staff’s ability to unlock the mystery of Soleil.

To be completely honest, when Christine first told me how many hours and how many days Soleil would be able to receive, I really thought, “Ok, we’ll try this for a week, and when it doesn’t work, we’ll drop out. With the amount of time they want her to work, there is no way, she’s going to be able to do this.” I’m not sure if it was a number of days, or weeks later, we met Meghan and Jen. Meghan was one hundred percent up front about what was coming. That Soleil’s behavior would become much worse before it got better, that there were times we would want to give up and throw in the towel, but if we could persevere, she was confident that they could help Soleil. Ryan and I both liked and trusted Meghan and Jen right away, and we would soon feel the same way about Shontel, Amie, Sheena and Cheryl and the rest of the BEACON staff that we have had the fortune of meeting. They engaged Soleil, and had no problem getting down on her level. In a matter of weeks, we could see Soleil forming a bond with them and we were blown away. She had trouble trusting everyone, and at the time, there were still family members she saw frequently that she did not trust and would not go to. We knew then, that we were going to be in this for the long haul.
Soon we were introduced to a whole new cast of characters, Kelly, Amie, Cheryl, Shontel, Sheena and of course, “Baby Bella”. We fell in love with all of them. In a matter of weeks we had learned terms and strategies that we never thought we’d be able to understand, and Soleil’s whole world began to open up. Soleil began to open up. It felt like meeting our little girl for the first time. Suddenly she could not only communicate with us, but understand us. The vacant look we had come to know so well, had faded completely. Replaced by love and recognition. The flat, undeveloped personality fell away, and we found our funny, bubbly, happy, princess obsessed, little girl. The little girl who couldn’t communicate in any other way, then by repeating or identifying people by phrases, started using full sentences and names. She started to master humor, and discovered she liked making people laugh. Soleil discovered food, and flavor and loved it. She learned how to run without falling down, so she could keep up with the other kids. She discovered, princesses, dresses, and sparkles and couldn’t get enough. I remember one day, when in the princess isle of Toys ‘r’ Us she announced, “I understand this place. I love this place!” Her attention span expanded in ways we couldn’t believe. She was finally understanding the world and what she had been missing. Most importantly she was finally able to say, “I love you, mommy. I love you daddy.”

Here I am two years later, with a little girl, who is nothing like the little girl who first met the BEACON staff. Our little blank canvas is just bursting with color and life. People often tell us that there is clearly nothing wrong with her, and that everyone is just too anxious to put a label on late bloomers. I can understand why they feel that way when they look at her and hear her speak. Nothing reaffirms my faith that we made the right choices for Soleil like those comments. They don’t know our BEACON angels and all they did for Soleil. I guess that’s how angels work though. Standing in the background, making miracles, taking no praise for themselves.

There are truly no words to express my or our family’s gratitude to all of you for all the time, devotion, hard work, love and a million other adjectives that I am at a loss to be able to fin d. None of you ever have to wonder if you’ve made a difference at the end of the day. You did. We see it everyday. You gave our daughter hope and a voice. You gave her the ability to live a reasonably normal life. You opened doors for us and Soleil. You opened our minds and the minds of all the people who come into contact with us and our daughter. Autism isn’t a scary word. It isn’t a frightening, life altering disability. It is simply a different way of being. It is a different way of seeing the world. Sometimes I think there is so much color and depth in Soleil’s world, that that is why she has trouble communicating it. That maybe our world is a little flatter and far more grey then hers. She teaches us everyday, and you were the ones that gave her the gift to be able to do so. I may have brought her into the world, but you are the ones that helped her figure out what being in it really meant. Thank you all our BEACON angels. Don’t ever stop trying, or reaching out to others. There are so many Soleil’s out there just waiting for you to find them. We love you all, and you are part of our family for always.

Dear Cindy,
On behalf of my son Luke, my husband and I would like to thank the outstanding staff of Children’s Therapy Services. Three years ago we were blessed with our son who was born with Down syndrome. Once he was released from the hospital I was told to call your agency. It came highly recommended. You contacted us and within his first month he began receiving services.

Each specialist that came to our house was extremely compassionate and professional. They came ready to answer the many questions and at the same time calmed many fears. They went over and beyond what was expected. Many times they came with information about events in our neighborhood, outreach programs with other families and basic information about what to expect raising a child with Down syndrome.
When we had to say good-bye to Luke’s first teacher as she moved on to another position in her career, Children’s Therapy Services replaced her with someone just as knowledgeable and dedicated. When Luke’s PT left on maternity leave you quickly substituted her with someone who continued to teach Luke the necessary steps to improve his motor skills. She too was highly qualified and Luke immediately felt comfortable working with her. the energy and enthusiasm each staff member we worked with is a key to how well Luke has developed and succeeded.

Through Children’s Therapy Services we were introduced to other families in our neighborhood who have now become our friends. We are thankful for the support we can give each other and continue to see our children grow and flourish through these friendships.
I am going to miss my weekly visits but feel confident that Luke has the skills he needs as he enters pre-school. He will be successful in part to the love, dedication and encouragement from Liberty, Gretchen, Amy and Lindsay. I will recommend your agency to anyone seeking services from Birth to Three.

My name is Corinne and I have been one of the parent representatives on the Connecticut Birth to Three ICC for almost 5 years now. My introduction to the ICC starts with the birth of my son. He was born 13 weeks premature in May 2009 and spent 9 weeks in the NICU before discharge. His gestational age at birth and extremely low birth weight gave him automatic eligibility for Birth to Three services. Our son’s early intervention service provider offered some information in which the ICC was looking for more parent representatives. After consideration with my family, I applied for an appointment on the ICC and attended my first meeting in Dec. 2010.

It has been a privilege to be a voice for parents of young infants and children that need and could benefit from early intervention services. Being a parent representative on the ICC allows one to offer advice and suggestions to the ICC from the family perspective. I tend to be quiet and reserved which has, and sometimes still does, cause me some anxiety in being part of an advisory council. To that, I feel it took me a while to “find my voice”. And I think that is okay. What I have learned in my time on the ICC is that each of us (parents) has the common denominator of having a child/children who was, or is currently, receiving Birth to Three services. But each of us has a different perspective or some facet of our experiences that distinguishes us and informs others. It is those differences that lends to our strength (as a group of parents) in advising on the ICC.

My name is Sharri and I am the mom to a special little 6-year-old boy named Wyatt. Wyatt was diagnosed with Autism and the genetic disorder Fragile X Syndrome, which is the #1 known genetic cause of Autism.

Our family and our home became hosts to a special group of early interventionists. It goes without saying that these services ramped up at what was a very painful and difficult time for our family. The one light piercing the darkness was the incredible team of professionals who worked tirelessly with him and with us. Wyatt was totally withdrawn into himself and when Wyatt transitioned to special education at the age of three, he was no longer alone in his world. He was active, affectionate, and learning how to communicate through PECS. He is still nonverbal but he has learned to communicate his needs, is doing well at school with modifications, and very charismatic!

After our services ended, I was invited to attend an ICC Birth to Three meeting. We had a great experience but I felt a parent’s perspective on the board was imperative. Who better to be a part of things that affect children with special needs and their families? It can be so difficult to navigate this world I found myself in, but I wanted to make a difference. With mentoring, assistance, and other parent cheerleaders in the ICC I hope you find a voice on our council. Along with other parents, I felt like we have made changes that benefit families and have made a difference. I hope to see you soon.