Parent Testimonials
Tonja Updike, mother of Garrett
Tonja Updike is the mother of 3 children, including her son Garrett, who is now seven. Tonja lives in Soldotna and is currently a special needs advocate and a member of the Governor's Council for Disabilities and Special Education. She shared her perspective on transition in a recent interview.
My name is Tonja Updike and my son was diagnosed with autism when he was 18 months old. We noticed he wasn’t developing like our first child and contacted the Infant Learning Program to have a screening done. He stayed in the Infant Learning Program from 15 months old to the three-year cutoff when we transitioned to the special education preschool program with the school district.
What was most beneficial to you in your transition process?
It is easy for me to say that the most beneficial thing during the transition process was the people working for the Infant Learning Program. They walked us through the process and made sure we knew what was happening and why. They knew our concerns about how our son would handle a new place and people so they made sure he was introduced to the teacher and the classroom before school started.
What was most challenging to you in your transition process?
The most challenging thing in the transition process was that since my son’s birthday was in late fall, he had to wait until his birthday to start attending class. By this time the class had already been going on for a month. My son takes a long time to adjust to a new environment and new people, so I wished we could have been involved in short durations at the start of the school year.
What is one thing that could have gone better or differently in your transition process?
The one thing that I wish could have gone better or differently was the tension between the private and school therapists. We invited our private therapists to the IEP meeting to share about our son, and it felt tense because both sides were on guard and defensive.
What is one piece of advice you would give parents who are going through the transition process?
If I could give one piece of advice to parents who are going through the transition process it would be to ask questions. It is easy to feel scared, angry, and/or overwhelmed when you are going through this. It feels like everyone else is in control except you, but the more you ask questions, hopefully the more information you will have and also the better you will feel because you are making sure you're involved. Also talk about your child and describe what he/she is like. No one knows your child like you do.
Describe your experience during the recent ATTI training.
I recently was invited to participate in the ATTI training in my area. It was great to see the people I had worked with in the Infant Learning Program and the special education preschool teachers. As a parent I was able to share my feelings and experiences in a nonjudgmental environment. Everyone was at the table talking about how we can make this better, and I was able to put my voice in too! I think it's important to include parents in this amazing process because we are the ones who can tell you if it is working for our child and what benefits or flaws we notice. It is a very empowering feeling.
April Hotchkiss, mother of three
April Hotchkiss is a mother of three adorable, redheaded boys ages 2-5. She is an experienced parent when it comes to transition since all three were enrolled in the REACH Infant Learning Program.
What was most beneficial to you in your transition process?
Preparation as to what to expect was the most beneficial.
What was most challenging to you in your transition process?
The biggest challenge as a mom was to send a 3-year-old child on the bus and trust him to strangers for 3-4 hours a day.
What is one thing that could have gone better or differently in your transition process?
I would like to see more parent involvement in school. I would like to get involved in school more, in a structured way, and would like to know how to do this. I would also like my children to be more social with other children and I would like some ideas on how to connect with other parents to set up play dates.
What is one piece of advice you would give parents who are going through the transition process?
I encourage parents to get to know the whole team and stay involved, otherwise you may get lost.
Describe your experience during the recent ATTI training.
I enjoyed participating in the ATTI training as a parent. Talking to adults was refreshing when you are around young children all day. Having manipulative toys at the table was also nice for those not used to sitting all day. I enjoyed the activity when participants switched roles when developing the vision statement. It helped understand another’s perspective.
Dareen Puhlick, mother to Brady
When Brady was born, we didn’t know what was wrong with him. We felt helpless. When Brady was five months old, we were referred to REACH’s ILP. REACH specialists came to our home regularly. They taught us what to do, what Brady was doing or not doing developmentally, and helped us understand what to expect in the future. It was great they came to our house because it was hard to travel. REACH also connected us with neurodevelopmental and genetics specialists. At age two, Brady was diagnosed with Mowatt-Wilson Syndrome.
When Brady turned three, he transitioned from ILP to preschool in the Juneau School District. REACH’s Resource Team assisted us with applying for a Medicaid waiver. We learned a lot about Brady during his transition to preschool. He had been so sick and had so many seizures we thought preschool would be too overwhelming. As it turned out, Brady loved preschool! He is thriving and experiencing a lot of joy. He comes home laughing every day.
I would never have known that he was capable of this without the helpful services of REACH ILP and JSD Special Ed. He is a celebrity at school and all the children know him. I see the benefits not only for Brady but for the other children as well.
The most helpful part of the transition process was the transition conference. All the professionals who would be working with Brady came to our home, since that was the most comfortable environment for him. Having everyone hear the same information at the same time and learn what Brady can and cannot do was extremely helpful. We decided to focus on a couple of goals and have everyone on board. Having one primary contact person to schedule appointments and relay information was also helpful, since so many professionals are involved in Brady’s life.
My advice for other parents: Keep pushing forward. Don’t give up. Have an open mind because you never know what your child may be capable of. There is help and support out there from people who are well trained and dedicated to their jobs.
Shelly Mensch, mother to C.J.
Looking back on the birth of my son, I remember counting his little fingers and toes, and thanking God for the miracle He had blessed us with. Now, I have been rethinking the past three years. Was I stupid not to see what the professionals were clearly describing in his development?
Our family physician never mentioned anything. If it hadn’t been for losing our health insurance we would still be using that physician. Now the kids were seeing a nurse-practitioner at the county immunization clinic for routine well child checks. She asked thought provoking questions during our appointments and in a kind manner asked if I had any concerns. I answered no. She suggested that C.J. could benefit from an early childhood screening to evaluate if there were any developmental delays. Developmental delays? Meaning what? Why?
In the weeks that followed, we were referred to Oregon’s Benton County Early Intervention program. They completed observations along with a developmental history and deemed C.J. eligible for services. What “services” and how would this benefit my child? The word “autism” kept coming up in these conversations. It was a new word for me. I didn’t know much about autism, but had a gut feeling every time I ran into it. The more I researched the more I was confused. What I hadn’t learned yet was how autism is a “spectrum or range.”
In the midst of all the well-meaning literature coming my way, I heard about an autism support group. I was curious about what experiences, resources, and cures other parents had learned, but I wanted the Reader’s Digest version. When you're a mother of three little kids, who has time to read through all the information out there? I wanted a nice and easy cure for my son, like cures for high blood pressure or an ear infection.
The support group was attended by parents and caregivers, as well as teens and young adults with autism. As I listened to the complaints and experiences, all of which had a grim prognosis, I felt sick. My son was not like any of them! They were describing a life that I would never live. I slipped out of the meeting as soon as it concluded, didn’t talk to anyone, and never went back.
The support group experience was more than I could bear. I remember crying all the way home. That night I began mourning the loss of my son as I wanted him to be, and of what I wanted him to become. I didn’t realize at the time that this is what many parents go through. It was all so much so fast. We didn’t have much support at that time in our lives; family was far away, and I didn’t want to scare away the friends we had.
At first I felt hopeless. My dreams for this child’s future were no longer possible according to all the literature. And yet I couldn’t focus only on him. Our oldest child was entering elementary school and the youngest was starting to walk. We wanted to enroll C.J. in the local Head Start program, but he was stuck on a waiting list.
All of a sudden he was in! The early intervention program intervened on our behalf and CJ was enrolled. That was a turning point for us, although in the beginning, I was worried about the reception our son would receive. My fears were soon calmed as the Head Start teacher visited our home and interacted with C.J. She had a unique way of anticipating what I wanted to ask and calming my fears. I found out that I had rights, just like my son. I began a tremendous learning process that served me for years to come.
As C.J. attended Head Start I found out what “services” he was eligible for: transportation, classroom aide, speech therapy, occupational therapy, and family advocate. All was included in his IFSP (Individual Family Service Plan). I was glad to receive all the assistance for my son, but the biggest benefit was what it did for me. The transition from the well child checkup to his first day at Head Start was about five months. Those were rocky months emotionally for me, as I didn’t have answers to all my questions. Having a family advocate gave me a clearinghouse: a person to share my thoughts and concerns with, and a person to pose my questions to. I finally shook off my insecurity of being the mother of an autistic child. I became a spokesperson for my son, a confident and informed mother who wasn’t going to be caught off guard again.
Lucy Hannigan-Ewing, trainer and mother to Sam
What was most helpful or beneficial to you in your transition process?
For me, it was knowing that our infant learning program had a process in place for getting my son out of ILP and into the school district. Because Sam has Down syndrome and because of my experience as a special education preschool teacher (many years ago), I knew I wanted Sam to go into the special ed. preschool in the school district. I started talking to my infant learning person a year before Sam actually started school.
Other things that were helpful:
- One day for our twos language class, a school bus came and took all the children and parents for a ride. Sam loved the ride and wasn't afraid to get on the big yellow bus on his first day of school;
- Meeting the special ed. preschool staff in May at the ILP building--it was a comfortable environment for Sam, they got to see him playing with familiar toys and interacting with familiar adults. In other words, they were able to see Sam's strengths and got to know him on his "turf." It was also comforting for me to know that there was a good, supportive relationship between our ILP program and our school district and a feeling of respect between the two agencies. It helped me feel like I was sending Sam to a good place;
- Sam's ILP speech therapist made a picture book for the family that had pictures of his soon-to-be preschool teachers and TAs, classmates, and classroom. The whole family was able to get a feel for who would be working with Sam and what his day would be like in his new school. All these things helped the family get ready for Sam's transition into the school district.
What was most challenging for you in your transition process?
The most challenging thing was the actual letting go: letting him get on the bus and not following it into the school, not being in his classroom everyday, not being able to see his actual interactions with his teachers and classmates, and the change in communication level between his teacher and me.
What is one thing that could have gone better or differently in your transition process?
I feel we had a near-perfect transition out of ILP and into the school district. The things I learned in that transition process have been very valuable to me over the years, and I have continued to use that process to transition Sam into the next grade level. Each spring we have him visit his new fall classroom and meet the teacher, and the teacher gets to know Sam when things are "quiet" rather than waiting until fall when the teacher has 28 new students. The one year we did not follow the transition process was a mess, and things didn't smooth out until December for any of us--Sam, the teacher, and our family. Successful transitions don't just happen. They take planning and many people who are willing to work together for the good of the child.
Ann Brantmeier, parent and team trainer
What was most helpful or beneficial to you in your transition process?
The most helpful thing in my transitioning process was having a group of caring people around to support me. Even though there were some barriers, there always seemed to be someone with the right information and if they didn't have it, they knew where to find it. Accepting that my child was not perfect and needed services was a personal thing I had to deal with. Finding people out there who treated her and me with respect and care was the best help. I wanted my daughter to have the best possible start in life, and making a good transition to services was really important to me. There were times when I felt things weren't going in the right direction, and having even one supportive person who listened was a great help. Realistically, not everyone is always going to be on the same page, but the more supportive people I surrounded myself with, the better the transition went.
What was most challenging for you in your transition process?
This may sound really strange (or not), but the most difficult part for me was to be open to what others had to say about my child. It went back to my acceptance of the fact that I had a perfect child with special needs! The difficulty was not in the transitioning process but in the learning to trust the process and discern the direction. I put my girl at the mercy of others who I didn't always know her that well. I had to trust what they had to say about her and what would help her. Sometimes I thought she was "too little" to be entrusted to anyone but me and people close to her.
What is one thing that could have gone better or differently in your transition process?
In a perfect world I would have wanted everybody on the same page all the time throughout the process. I had to really fight to have services delivered in the most nonrestrictive environment. I thought the whole world knew that it was best for kids that way, but it seemed that pull-out services were still preferred by special education teachers, at least those working in the villages.
Janell Mead, parent team trainer and mother to Heather
What was most helpful or beneficial to you in your transition process?
The staff knew what they were doing and I felt there was a good relationship between the infant learning program and the school district. I felt safe knowing that she was going to a good place.
What was most challenging for you in your transition process?
It was hard to let her leave the house at such a young age. She was only 3. That was the hardest part, emotionally, because she still seemed like a baby. She was delayed in everything, and she wasn’t potty trained yet. I think it’s a good thing that the hardest part was emotional, because it meant that the team had it together. We didn’t have to worry about where she was going or if she was going to go.
What is one thing that could have gone better or differently in your transition process?
The only thing that could have been better was looking at options, which we did on our own the second year. We just assumed she would go to the special ed. preschool, but the second year, we thought Heather should be going where her sisters go: to the co-op preschool. I think we had it in our minds that she was special-needs, so she needed to go to the special needs place. And that has probably changed by now, and kids are now more likely to be included in regular preschools. And it worked out for us.
What piece of advice would you give parents going through the transition process?
Stay involved, and go in and meet all the players. If there is a negative experience, don’t let that put you off. So many times I’ve seen elementary and preschool parents have a bad experience and not go back to the school. By the time your kids are in high school or middle school, you’re not involved at all. So keep at it, even if you have to swallow the bad experiences sometimes, and have faith that you’re going to find someone who understands your child.
Amber Lathrop, trainer and mother to four
Amber Lathrop is the parent of four children, ages 5, 6, 7, and 8. All participated in the Infant Learning Programat Frontier Community Services in Soldotna.They have all successfully transitioned to elementary education with the Kenai Peninsula Borough School District. Two children continue to receive support through IEPs and two do not require special ed services.
What was most helpful or beneficial to you in your transition process?
The most beneficial thing to ourfamily was the group effort to find the best educational program for each child. Having Head Start, ILP, and Child Find working together made the process go smoothly. Communication among agencies and a willingness to work together made the transition a positive one. My son Logan was nonverbal when he qualified for district services. One of my main concerns was for him to develop speech among age appropriate peers.To accommodate Logan’s need for social skills and speech,he attended sped preschool in the mornings and then bused to Kenaitze Head Start in the afternoons and on the mornings he did not have AM preschool. This was a highly successful team choice as Logan thrived in his combination of placements.
What was most challenging for you in your transition process?
As a parent, the most challenging thing for me was realizing the different qualifying factors going from ILP to school district. Both of my daughters, Sophie and Taryn, had been receiving private OT, PT, and speech services in addition to ILP intervention. With their given diagnoses, I was unsure if they would qualify for special education services. As it turned out, because of all the positive early interventions and therapies, neither required further special education.
What is one thing that could have gone better or differently in your transition process?
I can honestly say that I would not try to change the process. I was happy with the interventions and the people involved. The most trying part for me was the number of people involved.
What piece of advice would you give parents going through the transition process?
The best advice I can give is to write down goals for your children as well as your concerns so you are prepared at meetings. Asking questions in advance is a good strategy. The Step Ahead At Three book is also a great reference as it provides a step-by step guide to the transition process. Parents should also be encouraged to call a meeting if the placement chosen is not working. My younger son, Kian, moved to full day kindergarten in October after it was agreed that sped preschool was not his least restrictive environment. Parents should feel empowered to question and make changes if necessary.
