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Meet the Hanrahans
“The strength and grace we need for tomorrow will be there tomorrow.”
Hanrahan Family Motto
Leah and Tom are parents to Gabe who is eight, and two-year-old Wesley, who was diagnosed with PontoCerebellar Hypoplasia type 1B and has CVI as a result. The family lives in Humboldt, Iowa.
The four enjoy going on walks outdoors, walking the track at the gym, attending church and greeting neighbors around block and delivering sourdough bread Leah bakes.
Wesley loves singing at church and with TV shows. He enjoys the series of Bear in the Big Blue House and also Tumbleleaf. He reads books with Gabe and loves visits from IESBVI and area education agency staff. Wesley enjoys tasting queso and watching Christmas lights.
Services, goals for Wesley
The Hanrahans have several in-home services, but state their favorite in-home service providers are from IESBVI. (Go, Team IESBVI!) Goals for Wesley and his family include:
- getting into the pool more often- Wesley loves water and the Hanrahans want to explore therapy in the pool
- figuring out how to help Wes communicate in different ways, either by looking, using buttons or making noises
- working on assisted sitting and using Wesley’s muscles
- reaching out and being a bigger part of the special needs community – The Hanrahans would like to meet other people like Wes.
Wesley loves the light box, especially since a button has been added for him to control turning it off and on. The Hanrahans state they have seen the most growth with Wesley’s vision since he started working with the light box.
Challenges for Wes, offering advice
“A struggle we have is underestimating Wes,” the family said. “He always shows us he can do more than we anticipate. When he first received a diagnosis we were told, ‘He would never be able to do this,’ or, ‘He will never do that.”
The family shared they received the most encouragement from IESBVI and Early Access providers who advised them to take one day at a time to see what Wesley can do, instead of assuming what his limitations might be based on his diagnosis.
The Hanrahans want other families to consider working toward building a foundation. “You don’t know what kind of technology will come in the future, they said. “Even if you don’t see big dividends right now, we might see it in the future in ways we don’t expect.”
The family states self-care, in the form of individual therapy, has been extremely beneficial. They also find communicating with friends and family openly and honestly is helpful: “talking about how he’s actually doing and not sugar coating it,”they said. They have learned that explaining equipment and Wesley’s diagnosis to other people so they aren’t nervous and overwhelmed is helpful for them and for Wes.
It’s important to the Hanrahans that they can explain how Wesley functions and interacts best (showing them his best field of vision) so others can engage with him and see the joy he has, too. “People don’t get to see the glimpses of him when they don’t know him, so we explain how he functions best. We help them by saying, ’Oh, maybe we just need to be a little bit quieter’; or, ‘I know you want to hold him but lay him down and that is how he interacts best.’ Other people get to enjoy him more when they understand his needs.”
The family advises others facing the same challenges to be patient, and that they will become resilient. “With complex kids, you are going to get hit over and over, but it gets better each time. Just weather the bad and wait for the good, but you need a community. You can’t do all of this on your own,” they offer.
The Hanrahans said their resiliency comes from God, their Christian family community and knowing that God loves Wesley. “It is God in everything,” they state.
The family wants to encourage other families to advocate for their children with doctors and therapists to get what their child needs. “Keep going until you get the answers you are looking for. You deserve it and your child deserves it. Clarify what you mean. Tell them, ‘I still have this concern,’ and keep bringing it up.”
How IESBVI staff have helped
The Hanrahans note services they receive have been life changing. “Without them we would have no idea where to even start with helping him. You integrated into our family by coming to the house. Being in our home (when service providers visit) it’s easier to be able to open up about what’s going on. It also helps us to function in our home, like wanting to have Wes join the table for supper. You see our lives and are able to help us function every day.”
Having all in-home providers working on the same goals is important to the family and saves them from repeating it to each provider. They especially like the communication among the providers and that they share the functional vision learning media assessment (FVLMA).
The family states the most helpful resources come from IESBVI, Early Access and therapy staff, who help them understand the options for events and equipment. They like how providers know Wesley so well they can come prepared with suggestions on which equipment to try. “They take the time to know Wes,” they said, noting some providers might show up with something they saw at a store which might work for Wes and they bring it to the family. “It feels better to know the people caring for Wes have a personal interest in him – making them more like family than staff.”
