Sean is an energetic and loving nine year old boy. He lives at home with his parents, Alex and Stefanie, and his younger brother Danny (8). His older brother TJ (19) lives an hour away and visits when his can. Sean enjoys outings with his family, watching his favorite videos and playing in his backyard. He was diagnosed with autism at two years old. Like any lifelong disability, autism adds a unique set of challenges for an individual and his/her family. Addressing the needs of a child with autism requires a significant time commitment. There are appointments with specialists, sessions for speech, occupational and behavioral therapies needed on an ongoing basis. Finding time for his brothers’ sports practices and games in the midst of all these appointments can mean make for some very hectic days.

Children with autism often display challenging behaviors. Sean puts almost anything into his mouth, prompting four or five calls to Poison Control over the years. Childproofing your home gets a bit harder when the child is nine and can reach higher and knows how to open locks. Sean also has a tendency to wander off. His parents have called 911 on three occasions to ask for assistance, and Sean now wears a radio transmitter bracelet to help locate him should he get lost again. He is prone to self injury when upset and has also lashed out at caregivers, particularly ones unfamiliar with such behavior. It’s not simple to leave Sean in someone else’s care. A neighbor’s home may not be suitable, and it’s not feasible to call the local teenage babysitter. Even his older brother TJ found it hard to care for Sean for brief periods while his mother ran errands.

Sean’s younger brother Danny wrote an essay in second grade describing how much he loved Sean and how important his relationship with his brother was to him. He found it easy to look past the times he arrives late to practice or missed part of an after school activity due to Sean’s behaviors or needs. He didn’t mention how at least part, if not the majority, of every day at the Lombardo home is dictated by his brother. Simple things like what to watch, eat or listen to are frequently determined by Sean. While both parents try to be at every one of Danny’s soccer games or karate events, only one at a time is able to watch. Alex and Stefanie take turns walking with Sean (who is rarely content to be still) to keep him from wandering off or getting into harm.

Danny’s never known a time when Sean did not command most of his parents’ attention but, for TJ, who was 13 when Sean was diagnosed, adjusting to such a dramatic change was difficult. Parents like Sean’s struggle with the guilt of having too little time to give to the other children in the family. TJ found it difficult at times to keep from feeling resentful of Sean and his constant demands.

Sean’s family cannot imagine what life would be like without him. He is generous and loving, clever and playful. He has taught them more about strength of spirit and simple compassion than they can express. Alex and Stefanie know that every day with him is an amazing gift, one too few people will get to share. They know too that raising Sean comes with unique demands and infrequent chances for respite. Jill’s House would give them the opportunity to create special outings with their other children, giving them undivided time and attention. It would mean an anniversary dinner at a table for two rather than four or five, a chance to attend events together rather than alone.