Special Needs Through the Pandemic

We profile some local families with special needs and the challenges they’ve faced through the pandemic.

J.F. Shea Therapeutic Riding Center

San Juan Capistrano

Parents: Krysti and Brendan Crafts

Kids: Olivia Griffin, 7, Brooklyn Griffin, 5, Juliette Crafts, 3, Savannah Crafts, 20 months

City: San Clemente

Special needs background: Juliette was born weighing 5.5 pounds, a week early, with low muscle tone and developmentally delayed. She began physical therapy at 6 months because she was not able to sit on her own. At about 14 months she started walking, but she still was not talking. “We were at a loss as to what to do next and it wasn’t until we were at the Shea BBQ in 2019 that we got our answer,” said Krysti. “Shea 100 percent changed her life for the best.”

Brooklyn was progressing well until about 1. She wasn’t talking much and wasn’t able to hear out of her left ear. She had tubes put in when she was 13 months old and started speech therapy at 22 months. “That is also when we learned that she had sensory issues,” said Krysti. “She would tip-toe walk, didn’t like certain food textures, did not like wearing certain clothes with rough or scratchy fabrics.”

Savannah was also developmentally delayed and had some low muscle tone. “We talked to Shea about getting Savannah in the program and we all agreed it would be the best thing for her, but then the world stood still with COVID,” said Krysti. “But that did not stop Shea from helping her. We got to meet the amazing Mr. Matt Hueburt via Zoom.”

Now all three girls are receiving hippotherapy (equine-assisted therapy) at The Shea Center. Juliette and Brooklyn receive physical therapy and occupational therapy and Savannah receives physical therapy. A typical session is about 45 minutes and involves games, poses and other therapeutic activities all while riding a horse. Once they are done, they can visit with other horses and they get to give their horses treats.

How has life changed during the pandemic for your family?

“Life came to a dramatic halt when COVID hit. We went from our normal routine of school, Shea, dance, etc. to nothing at all. It was really hard for the girls in the beginning because their normal routines were taken away from them. We learned to navigate life as best we could as a family. Then once restrictions were lifted a little bit in June, they were able to go back to their happy place and they picked up right where they left off.”

What challenges did you experience?

“The challenges were that their normal routine was taken away from them. They had no outlet for energy, social emotional, nothing. They had their immediate family but that was it. They struggled with not seeing grandparents, cousins and friends. They didn’t have the therapies they needed on a daily basis.”

Are there specific issues that came up?

“Socially/emotionally is where we noticed the biggest change in the girls. Juliette mostly because she had come so far before the lockdown and when it happened she didn’t have her PT to keep up her muscle tone. When we finally were able to come back she had reverted back in so many ways and it was a challenge for the first month back. They all had attachment issues and didn’t want to leave me and for Savannah it was the hardest because she was so little and had not been around people for so long that for her it was hard to be around people that she didn’t know and with face masks on. It was different for sure. Brooklyn behaviorally reverted back a little bit. There were more meltdowns and harder days, but we learned to navigate it all and since we have been back we have come so much further than we had before.”

What has helped?

“Honestly just being a tight-knit family helped in so many ways. We are the biggest cheerleaders for our children and we just want them to succeed so we just took it day by day and worked with them and reassured them that it was all going to be OK and we loved them so much.”

What advice do you have for other special needs families living through this time?

“Don’t give up. We are truly all in this together and there are going to be hard days and good days, but reach out to friends and family for support. Don’t think you have to do it all alone. We are so thankful that we have Shea and our family there.”

RAD (Rising Above Disabilities) Camp

Irvine

Parents: Katie Webb Brundige and Robert Timothy Brundige, Jr.

Kids: Alexander, 20 months

City: Orange

Special needs background: Alexander has Prader-Willi syndrome. “PWS, as it’s more commonly known, is a chromosome abnormality affecting the 15th chromosome,” said Brundige. “At birth, it appears as an inability to thrive with low muscle tone as well as difficulty eating, among several other complications. As he gets older, his metabolism will change a lot, so his struggles will revolve around food, as well as the possibility of developmental disabilities. Although there are struggles, to us, he is perfect. We call him our designer baby. He has the cutest curly hair, the best smile, and loves to cuddle. We couldn’t ask for anything more.”

You are in the process of adoption?

“He came home to us when he was 3 months old. Due to COVID-19, and with all the closures in the government offices, the process has taken a lot longer than anticipated. We hope to officially adopt him by the summer of this year.”

How did RAD start?

“In 2014, RAD Camp was founded out of a drive and passion to do more for the special needs community. Meghan Clem — RAD’s second co-founder and my partner in all things — and I knew that we could do more for this community, a large group that was in desperate need at the time. … Most recently, we established RAD Club, which is an offering built from the pandemic, where we can reach campers wherever they reside to provide them with fun, interactive and adaptable content along with a virtual community for them to interact and belong.”

How has life changed during the pandemic for your family?

“Before the pandemic, my husband had just received a promotion and was traveling frequently. I was also working 50-plus-hour weeks and we were shuffling our schedules making sure Alex was getting what he needed. Once the pandemic hit, we were all at home, virtually overnight. Tim’s schedule went to his laptop only; mine was working through rescheduling more than 70 events for our Intertwined Events’ clients in 2020, and Alex’s therapies were all moved to Zoom. In some ways though, it’s been a blessing. We’ve since had the chance to spend so much time with Alex and really focus on him, so he could flourish and thrive. We saw such tremendous growth in him from March to summer of 2020 and that has been our silver lining of the pandemic, so far.”

What challenges have you experienced?

“It was so challenging to ask for help. … We were also working through RAD Camp parents begging us to figure something out. Camp is a lifeline for so many, so they instantly knew the pandemic would be an issue for us all. Everywhere I turned, I was dealing with the emotions associated with people’s disappointment. We were working long hours to try to navigate this, all while babysitters and family were no longer able to help with Alex, and therapies were shut down.”

What therapies does he receive?

“He gets two hours of physical therapy, two hours of occupational and feeding therapy, one hour of hippotherapy, one hour of infant STEM (on Zoom), and 30 minutes of water therapy each week. We are about to add an hour of speech therapy to the schedule, too.”

Are there specific issues that came up?

“Alexander is medically fragile. He has pulmonary issues — which have a greater concern with regards to COVID-19. That meant that when others were being a little laxer, we had to buckle down and tried to really keep our circle very close. At the same time, we go to doctor’s offices and therapist’s offices all the time, so we have been in sensitive areas consistently, too. We had to be diligent and ensure we were taking care of ourselves, mapping out all of the necessary precautions, and walking the fine line of ensuring we were getting him the care he needed, but not putting him in harm’s way.”

How has your son been able to continue his therapies?

“We were originally on Zoom sessions from March until September 2020, but Alex was not making the progress I knew we could be making in person. It was hard to see. Finally, we talked to our support group at Regional Center and at Beach Kids Therapy Center to come up with a plan we were comfortable with to bring him back to in-center-based therapy. We are so grateful we have been able to go back. He was falling behind quickly then and I can see we are finally picking up pace once more.”

Blind Children’s Learning Center

Santa Ana

Parents: Diana and Valentin Gonzalez

Kids: Jayden, 3, Max, 18 months

City: Santa Ana

Special needs background: Jayden was diagnosed with hydrocephalus, absent corpus callosum, multiple congenital abnormalities, hypoplasia of the optic nerve and is blind in the right eye. “Jayden had his first surgery when he was just two days old when the doctors drained the spinal fluid that was built up in his head to relieve the pressure,” said Diana. “Jayden’s newest diagnosis is that he has global developmental delays. Due to Jayden’s vision impairment he has to wear glasses not just to see, but to protect his eyes. We were in the process of getting Jayden a soft prosthetic lens because surgery was out of the question due to possibilities of him losing his eyesight completely. For Jaden’s safety, he wears a helmet when he practices his walking and also has ankle braces that help him stabilize his balance.”

What therapies does Jayden receive at BCLC?

“Jayden attended an infant stimulus program through BCLC until he turned 3 years old. Jayden’s teacher, Alicia, helped Jayden accomplish many of his goals. When Jayden was 12 months old, he had a difficult time with textures. By the time he was 16 months, he enjoyed play time in the sand at the beach and on the grass. Now Jayden is 3 years old and rolling down hills, loving every minute of it. He was also receiving speech therapy. Speech has helped him so much because he went from being 100 percent non-verbal to learning how to communicate through ASL. Jayden knows his basic communication words like ‘thank you,’ ‘please,’ ‘excuse me,’ ‘eat,’ ‘bathroom’ and many more.”

How has life changed during the pandemic for your family?

“Life has changed in so many ways. Jayden had a hard time adjusting to all the changes — he didn’t understand why he had to see his teachers through a screen rather than in person, didn’t and still doesn’t understand why we have to wear face masks, etc. We always spent time together as a family when we were off work and school. Due to the pandemic my husband had to travel to work in the Bay Area. Those months were long and emotional because Jayden and Max would only see their father through FaceTime when he was out of town. Valentin would drive seven hours to come see us when he was off, but we felt it was not enough. Jayden also had surgery in December during the pandemic and only I was able to be with him after he woke. During this pandemic, we also lost loved ones and because of Jayden’s health history, we were unable to travel to say our goodbyes to those loved ones.”

What challenges has Jayden experienced?

“Jayden was deprived of being able to be social with others because of the pandemic. He was not able to learn how to play with other children who were around his age. His physical activities went from exploring outdoors to watching music videos and playing indoors with toys. The fact that we had no face-to-face sessions heavily impacted with Jayden’s schedule. He was not able to concentrate sitting behind a screen due to his vision impairment. Doctors visits were cancelled multiple times due to the pandemic. It was difficult to manage the anxiety levels without being able to go out as a family.”

Are there specific issues that have come up?

“In-person physical therapy sessions were cancelled for many months, causing Jayden to fall behind in his progress. He is just now catching up, but we are still unable to get approval for his walking equipment until he can be evaluated again in person.”

How has Jayden been able to continue services at BCLC through the pandemic?

“We first had over-the-phone sessions through FaceTime, then moved to telehealth services, followed by Zoom sessions. Just recently we were able to return to campus, which has been different, but definitely worth the whole process.”

What advice do you have for other special needs families living through this time?

“The best thing that I can advise other families is that this all will pass and we will soon be able to return to our normal lives, but for now, this is our new normal. That said, we should not be alone. We need to stay strong and stick together. Don’t hesitate to reach out and ask for help.”

Reimagine

Fullerton Campus

Parents: Sheila Luna and Andrew Osorio

Kids: Matthew Osorio

City: Whittier

Special needs background: “Matthew suffered a hypoxic event at birth, meaning there was lack of oxygen to his brain during his birth causing brain injury,” said Luna. “This lead to his primary diagnosis hypoxic ischemic encephalopathy (HIE), which also developed seizures, cerebral palsy, sleep apnea and several global developmental delays.”

What therapies does he receive at Reimagine?

“Reimagine provides speech, occupational and physical therapy. This program encourages children to learn through play in addition to the therapist taking the time to work with each child one-on-one. … Matthew has gained so many new skills since starting Reimagine. From being introduced to a walker to learn to become more independent to learning how to self-feed and learning to be more social with his peers by crawling to them. In addition to all this, Reimagine also provides the parents with a 30-minute class a month that focuses on a certain therapy and provides different skills to help us better understand and be able to continue the progress at home.”

How has life changed during the pandemic for your family?

“The pandemic has affected our lives significantly. Our normal day routines and roles changed due to this. Not only did we have to be parents, but we also became Matthew’s teacher, speech therapist, physical therapist, occupational therapists while trying to have Matthew participate, and maintain the rest of the household. Like the rest of the world, Matthew was not able to attend school and his much-needed therapies. For a child with special needs, Zoom video sessions were not ideal or effective. We were doing our best we could, but it was heartbreaking to see that all the progress we had achieved was slowly disappearing. Matthew missed his social interaction with his peers and even teachers and therapists. Adjusting to life being this new norm was hard for all but especially the children.”

What was a typical day like pre- vs. post-pandemic?

“Our life was normally filled with schedules, appointments, and a whole lot of busyness. Once the closures began, we had to figure out a new routine for Matthew. We tried to keep his schedule the same as much as possible, but it was a hard adjustment for him. This new change led to behavior since he is not able to understand what’s going on and why he can’t attend his activities. As parents we had to take a step back and realize that expectations had to be more flexible.”

What has helped?

“Working hand-in-hand with Matthew’s therapists has helped overcome some of these challenges. They understand that with his special needs, a virtual setting is unrealistic so they have helped us by guiding us and giving us essential resources and tools to be able to better cater to his needs during this time. I have also heavily depended on my fiance Andrew’s help during this time because trying to do it all can be hard on everyone.”

How has Matthew been able to continue services at the center through the pandemic?

“Reimagine has done a phenomenal job providing virtual telehealth services during the closure. The telehealth service consists of music the children enjoy, just like circle time at the center. They also offered a free weekend virtual dance class done by a very sweet and patient volunteer, Elliana Kim. Providing these services has given the children some type of normality and has given them the chance to strive and help them engage and interact during these difficult times. On top of that, Reimagine has gone above and beyond for all the families. They provided care packages for all their participants and families. They would schedule a drive-by at a day and time that was convenient for all the families. Even though Reimagine has resumed services at the center, they still offer virtual telehealth circle time on Wednesdays for the families that are not ready to return.”

What advice do you have for other special needs families living through this time?

“It is OK to break the structure and routines sometimes because the norms of today have made having that hard. We need to be able to be flexible with expectations and the daily changes. We need to take it day by day and cater to [our] children the best way we can. As parents we are playing so many roles right now, so we also have to remember about self-care. We also need to take care of ourselves in order to be able to take care of our families.”

YMCA OC Inclusion Program

Arroyo YMCA, Santa Ana

Parents: Victoria and Gerardo Chavez

Kids: Aiden Jimenez, 8, Christopher Chavez, 4, Sophia Chavez, 3

City: Tustin

Special needs background: Aiden was diagnosed with high-functioning autism. Christopher has a speech delay — he did not start speaking until he was 4.

How did you learn about the YMCA Inclusion Program?

“Aiden started receiving services in June of 2018,” said Victoria. “We learned about the services through Help Me Grow. We previously had him at another preschool and they were seeing signs of aggression towards the teachers and other students — they advised we reach out to Help Me Grow as a resource. They had us reach out to the YMCA as they provided 1:1 service. They came and evaluated him and saw the same things we were seeing. They said there was an opening at the Y on the Arroyo campus, which was not too far from us. I called the location and signed him up and it was the best decision we ever made. We hold the Y accountable for a lot of the progress Aiden has made.”

What therapies does he receive there?

“Aiden has an Inclusion facilitator that is provided for him. The 1:1 support helps Aiden to stay focused on social goals. Pre-pandemic we were seeing a good amount of progress. Aiden struggles with eloping and aggression/frustration. Before the pandemic he was learning how to appropriately express or manage his emotions and was able to accept a ‘no’ answer as the answer without eloping or showing aggression. It has been important for us to get him back into that setting as we were seeing a decline in his behavior at home.”

How has your family’s involvement come into play in meeting goals?

“Distance learning has given us the opportunity to see firsthand his ability to learn and where he needs support the most. With this newfound knowledge we can better understand and guide him at home.”

How has life changed during the pandemic for your family?

“Before the pandemic we did not get to spend as much time with each other. … The pandemic has allowed us to grow together more as a family. We get to see the kids grow and hit milestones that we might not have been able to see before due to our hectic schedules.”

What challenges have you experienced?

“As a family with special needs children, the pandemic has brought us many challenges, such as trying to balance working from home and distance learning with both of our boys. Aiden felt a sense of anxiety when we first explained what was happening in the world. We would go on car rides and he would not allow us to roll down the window. He felt and talked about the possibility that we would catch the virus if we rolled down the window. As time went on, he was able to better understand the importance of properly washing your hands and wearing a mask. Lockdown has also limited us from being able to see our families, which was a normal routine and important to their social growth. It’s also impacted activities that would help address his sensory needs.”

Are there specific issues that have come up?

“We have noticed less patience and high energy due to the limitation of outdoor activities. We noticed Aiden was requesting more alone time as he seemed more sensitive to noises.”

What has helped?

“The biggest thing to help overcome the challenges that Aiden has faced was returning to the Y. He was able to continue with his social progress along with physical activities.”

How have services at the center continued?

“We are glad that the Y has reopened. They have done a phenomenal job maintaining social distancing and reassuring us that Aiden is in a safe environment.”

What advice do you have for other special needs families living through this time?

“Communicate, communicate, communicate. It is important to ask questions whether it be to their teachers, support services, child care. Ask for details on how their visits or just their day went.”

By Jessica Peralta