Elaine A. Cypres - mother, grandmother, friend.

The last 6 weeks have been a whirlwind. I think Memorial Day weekend and the entire month of June have forever been changed for me. It all started Sunday, May 26th. We were at an event at a local fire station for children with special needs that afternoon. It was brutally hot outside and we were watching the firemen (and women) show us the firetrucks and equipment. I got a call from my mother (or so I thought) but we were outside in the heat, sweating, and I decided to call her back later. When we left I called her without checking the voicemail that I later found and she didn't answer the phone. Instead the daughter of the person (Toni) who cleans her apartment answered the phone. She said when they arrived they found my mother on the floor unresponsive and they had taken her by ambulance to the closest hospital. She had fallen and hit her head and they thought she'd had seizures and possibly a stroke. My mind raced and we went home to call the hospital to confirm she was there before we went down there. When we got there she was still in the emergency room, they hadn't given her a room yet. She was having trouble clearing her airway so they intubated her and they were going to sedate her because she was having seizures and they wanted to sedate her until they got the seizures under control. There wasn't an official waiting room for the emergency room and not enough room for people to be in her area and Joshua wasn't allowed in. We waited in a little hallway for hours for them to get her a CT scan. When they finally did they didn't have the results right away and it was late so we left to get something to eat. They were supposed to call us when they had any news. We called and they didn't have any news so we went home. They didn't get her into a room in the ICU until the middle of the night. When we got home we called my brother Tony, her friend Robin, and the person who found her to update them on the situation. My brother flew down the next night and Robin drove down for the day the next day.

When we got up there the next morning which was Memorial Day (after we dropped Joshua off at the ABA therapy clinic for the day thank goodness for that) we met the nurse and nothing had really changed, we waited on the doctors to get there after making their rounds. They said they were still running tests to find out what had happened as they didn't know yet. The tests they did didn't come up with anything. They changed her medication to try to control the seizures better. Tony arrived that night and stayed at a hotel close by. We found out the next day that she had indeed had several strokes. We don't know what happened first, the fall, strokes, or seizures.

The next several days they tried to control the seizures and wouldn't wean her off the sedation until they had the seizures under control and then they would take out the breathing tube. They said seizures can last 3-5 days after a stroke and it was the full 5 days before the seizures were under control. Then they weaned her off the sedation and removed the breathing tube. We all waited on pins and needles to see what her reaction would be once she was breathing on her own and not sedated. They told us the areas of the brain that were affected by the stroke included areas related to language, speech, hearing, and vision. We didn't know how these would be affected.  Almost immediately we found out that she could see and hear and she was able to speak and understand us. The next few days she made amazing gains; she was able to answer questions, move all of her limbs, and she kept moving forward. She had PT, OT, and speech visit her and get her moving. She actually took some steps, worked on getting dressed, and personal hygiene. She was moved to the 10th floor which is the neurological floor. She had a feeding tube in her nose which bothered her a lot and the goal was to get it removed. So they did a swallow test and started her on liquids. She had to stay on the same consistency of liquids for a certain amount of days before they would do a new test. We were all waiting for that test to happen. At this point she had been in the hospital about 2 weeks.

Unfortunately, the new test never happened. In the middle of the night she developed a high fever and stopped being as responsive as she had been previously. We don't know if it was because of the fever but that is what we suspect and it took a while to get it under control but for the next several days they tried to get her to respond the way she had been and she was unable to. She was still breathing on her own but she couldn't answer questions, follow commands, or make purposeful movements. The doctors called it post-stroke dementia. The week before when we had brought Joshua up to see her she was so happy to see him and telling him she loved him. Now when we brought him one time she smiled at him, after that she didn't respond to him or us. Whenever she did make any kind of noise it was like grunts or cries. The doctors told us this was her new baseline. We were all devastated. Just a week ago she had been doing so well and making gains. We had gone to look at rehab facility for her and put in an application. This still makes me sad every time I think about it. I couldn't believe this was happening and we had no answers as to why. Everything pointed to the high fevers but they couldn't be sure. They did all kinds of tests and found nothing, no infection or anything that could they could say was the cause. We had no answers as to why she had this decline and the doctors couldn't see her coming out of it. It was awful watching her suffer without a way to communicate. We tried to communicate with her but she couldn't respond. She was trapped in her body and could only make noises but not in a communicative way. She couldn't respond to commands in any way. It was miserable for her and for us to watch her suffer this way.

We had an impossible decision to make. After watching her and not seeing any changes over several days we decided it wouldn't be fair to let her continue to suffer in this way. We knew this was not what she would have wanted. Unfortunately, she did not have a living will which would have told us her wishes but she had expressed them in the past and we knew she would not choose to continue on this way. The doctors told us they would do all they could to keep her comfortable and we decided on hospice comfort care. It was the most difficult decision I've ever had to make. It was not a position I wanted to be in, I don't think anyone does. It was very difficult for me to be there watching her when she was in this state. It was difficult before when she was communicating because she would cry and say how she was tired and sometimes tell us how she felt and that would break my heart. This was harder because she couldn't communicate. At least then I could hold her hand and talk to her, tell her I loved her and I was there and she heard me. Now I didn't know what she heard or understood and I couldn't soothe her.

I have to give all the credit to Tony for this entire ordeal, he was absolutely amazing. I couldn't be there the entire time because I had Joshua to take care of. Tony was there, almost all the time. He was the one communicating with the doctors and telling us everything that was going on. One weekend (before she came out of sedation and had the breathing tube removed) he was there, her brother and sister-in-law, and Robin and her husband Steve were there. Her friend Carolyn and her daughter came to visit for one day as well. Her friend Toni and her daughter came weekly to visit  I had wonderful support during this time. I had friends and family messaging me to ask how I was doing but Tony was the one keeping them updated on the situation. I really don't think I could have gotten through this situation without him. I wouldn't have been able to be there as much as he was and I wouldn't have had the support from him as well. Everyone was respectful of the decisions that I had make.

As time went on they did their best to get her more comfortable. They were able to get her to stop crying out as much and eventually she became peaceful. During the entire time she was in the hospital up until this point she had not been resting very much. Even when she was sedated she wasn't getting restful sleep. Once she was out of the sedation she wasn't sleeping for very long because they had to keep coming into her room to check on her. Now, she was finally getting rest. She had been fighting so much during this most recent period where would have quiet moments but not very many and she didn't really seem to sleep although she was not very awake, it's hard to know exactly where she was because she couldn't communicate. Now, she was resting and peaceful. We knew she needed the rest but we also knew the reason was the pain medication they were giving her to make her comfortable. Now was the hardest part. I knew what was coming and I didn't know what to do. I didn't know how to tell her I was sorry, I didn't know how to say goodbye. How do you do that? I couldn't and I told her this through tears. I tried to get some things out to her but I couldn't manage to find the words. I told her how many people loved her and that we wanted her to be at peace. But mostly that I was sorry that this had happened.

We spent the next several days with her as much as we could be. Tony slept at the hospital at night so she wouldn't be alone and she was never left alone. Robin and Steve came down Friday night and stayed so we could take turns ensuring someone would be with her all the time. We were all there with her on Sunday afternoon. We were actually playing cards. We were watching her breathing because it had started to slow down. We were discussing what we were going to do about dinner. Jamie was coming down with Joshua to meet us somewhere for dinner. Then it happened. It kind of caught us off guard. She was taking longer pauses between breaths and then just stopped. The next few moments kind of went by in a blur. Talking to nurses and coming to the realization that she was gone.

I have never been through anything like this before. When my father passed I wasn't there. Nor any other family members. Also, this was different. This was my mother and the family member I had been closest to my entire life. She moved to Columbia to be closer to me and to Joshua. The first preschool he attended was just a couple of miles from her apartment and he started right after she moved in. I was with her 2-3 times a week while he was at preschool for 3 hours in the morning, I was at her apartment. We would eat an early lunch and then I would go pick him up. This was for 3 years until he started preschool in the public school system. This was a private preschool for children with and without disabilities. After that we saw each other a little less frequently but still got together. She went to the zoo with us, to parks, we had lots of lunches and dinners out together. She spent holidays with us. She stayed overnight at our house occasionally like when she would watch him for us so we could go out and for holidays. She went to all of Joshua's birthday parties, my baby shower, hosted a bridal shower for me, and of course she was there for my wedding. So, devastated doesn't begin to cover how I felt.

I think I had been going through the motions for most of the time she had been in the hospital, I think somewhat I am still going through the motions. I have allowed myself to cry and feel but I still have to keep going. I really hadn't stopped thinking about the situation since it had begun. I still think about all aspects of it all the time. I'm still coming the realization that there will be no more holidays together, no more meals out, no more trips anywhere. I think as each milestone passes (as I have heard happens with other people who have been through this) those emotions will be there. Joshua will have a birthday party and she won't be there. Then there will be holidays and birthdays. I daily think about the fact that I can't talk to her on the phone anymore.

I wanted to write all of this in part for me to get it all written down, to put it all on "paper", and in part if I ever share it with anyone so they can know more about the situation and what happened. We had so many people who were there for us and who wanted to know what had happened and I think they deserve to know if they want to. I think over the coming weeks and months I may share more. So far I haven't really shared on Facebook. I guess I didn't really know how to start. It was a little too much to put in a Facebook post. So I started writing this as a way to remember what happened and also a way to express my feelings. I have been thinking about it non-stop for weeks and I needed to get it out of my head. It's a little bit therapeutic for me. We had a beautiful service for her here and lots of friends came. Anytime anyone tried to talk to me or hug me I cried. I wrote a eulogy that I never though I'd be able to read but somehow I got through it. We have a recording of it which I will share as well as a slideshow of photos. Here is the recording, I wasn't able to get it to play on my computer only on my phone Audio Recording of Service. Here is the slideshow and obituary Tribute Page. There you can post notes as well. So that's it for now. If you've made it this far, thank you. Thank you to all who were there to support me and my family during this time.

Below is the eulogy I wrote & delivered at the service.

Sitting in the hospital alone with her when I was able to get the words out through tears I told her I don't know how to do this, I don't know how to say goodbye. I tried to tell her and I hope she knew that I loved her and appreciated her but I don't think words are enough. The past few days have been busy and have seemed surreal; trying to get through each day and each task to get to today. The hardest part has been knowing that I can't pick up the phone and call her anymore. I could call her anytime and we talked about everything. She was one of my closest friends and confidants. I hope that I was the same for her. She loved her friends and family especially her grandson, my son, Joshua. I am grateful for the wonderful memories I have of them together. Every time she said goodbye to him she told him she loved him from the top of his head to the bottom of his toes and she would kiss and try to hug him, he's not big on hugs. He loved it. He loved it when she read to him. I could always count on her to help me whenever I needed help but especially with him. I couldn't have made it through our most recent move without her. I hope she knew that no matter what was going on in my life that I was there for her anytime she needed me the same that she was there for me whenever I needed her. I know that she was there for a lot of people in this room and many people who are not here. She was a friend and confidant to many. She was definitely a people person, much more than myself. I could always count on her to make friends wherever she went, whether I wanted her to or not. She did her best to encourage me to make friends She led a brownie girl scout troop when I was young to help me make friends. She would organize play dates for me. She would let friends tag along on our vacations so I would have someone to play with while she would sit on the beach and read all day long under an umbrella; I would always know where she was. I have many fond memories of trips we took together over the years. Getting lost in Washington, D.C. before GPS when we would see our hotel from the interstate after we passed it and found a cop in neighborhood where he wouldn't get out of his car to give us directions (if that gives you any idea of the kind of neighborhood it was). Going to St. Maarten with her when she had a broken leg. She was an advocate for me which has helped me to be an advocate for my son. She taught me resilience, compassion, and so many other things over the years. She was many things to many people over the years and I hope she knew that and how many people loved her. I don't think I can say thank you enough to her for all she did for me and many others. I also want to thank many people who are here today and some who aren't who have helped me and her this past month; I don't know how we would have done this without them.

10 years old!

Camp Yofi & Camp Burnt Gin

This past Sunday we returned from our third family camp experience in the mountains of northern Georgia at Ramah Darom - Camp Yofi. Ramah Darom (Ramah of the south) is a non-profit organization offering year-round Jewish programming for adults and summer camp for children and families. Ramah is the camping arm of Conservative Judaism. Each year, more than 11,500 campers and university-aged staff members populate ten residential camps, five day camps, and Israel programs. An additional 300 young Israeli adults join the Ramah camp communities annually. Overnight camps: Berkshires (New York); California; Galim (Northern California); Canada; Darom (Georgia); New England (Massachusetts); Poconos (Pennsylvania); Rockies (Colorado), Ramah Sports Academy (Connecticut), and Wisconsin. Day camps: Chicago area (Wheeling, IL); Greater Washington, DC (Germantown, MD); Jerusalem; Nyack, NY; and the Philadelphia area (Elkins Park, PA). Additionally, Ramah runs summer and high school semester programs in Israel, and partners with summer camp programming in Ukraine, Argentina, and Israel.

Ramah Darom is located on 122 acres in Clayton, GA and is surrounded on three sides by the Chattahoochee National Forest. The lake is fed by mountain brooks and a 100-foot waterfall. Ramah Darom's facility is kosher and includes a variety of modern accommodations, team building equipment, sports fields and courts, a pool and lake, a gym, and a spiritual center. Camp Ramah Darom offers two four-week sessions, full eight-week summer, Taste of Ramah - a 12-day session for first time campers ages 8-10, and a Tikvah Support Program for campers with Neurodevelopmental Disorders such as Autism and ADHD ages 12-18. The Tikvah Support Program began in 2015. Tikvah Support Staff members are specially trained to work with the children in this program. Audra Kaplan, PHD, is the Director of the Tikvah Support Program as well as Camper Care.

I found out about Camp Yofi through Ellen Seidman who writes at Love That Max http://www.lovethatmax.com/. Her family attends camps in New England including a family camp that they have at one of the camps that is similar to Camp Yofi. When I was growing up I attended Camp Young Judaea Sprout Lake and Camp Tel Yehuda. Young Judaea is a Zionist youth movement with summer and year-round programs for children and young adults in the US and Israel. So, hearing about Camp Yofi at Ramah Darom I was interested because I attended Jewish summer camp and I wanted Joshua to have that same experience.

Camp Yofi is a nationally-recognized, one-of-a-kind program for Jewish families with children with Autism Spectrum Disorder between the ages of 6 and 13. Parents, grandparents, and siblings are invited to attend and all Jewish families, regardless of denomination or synagogue affiliation, are welcome. There is a quote on the Camp Yofi page on Ramah Darom's website https://www.ramahdarom.org/camp/summer-offerings/camp-yofi/ that I wrote. “I still can’t quite put into words what Camp Yofi meant to me but I will try. It’s a place where you feel like you truly belong. Those of us in the special needs world understand how rare that is. We were definitely a part of something bigger than ourselves.” –Yofi Campers Mom. I wrote that following our first camp experience.

The mornings at Camp Yofi offer something for everyone, with separate tracks for 1) children with autism spectrum disorder, 2) siblings, and 3) parents. During the afternoon, we offer a variety of programs the entire family can enjoy. In the evenings, the Camp Yofi community comes together for campfires, guitar sing-alongs, s’mores and other family programs. After the children go to sleep and are under the care of our specialty-trained staff, adults get together for engaging programs. Each Camp Yofi family receives a chaver (a special friend) who spends mornings and evenings with the same family throughout the week, providing a helpful, supportive and consistent presence. The 5-day, 4-night program begins on Wednesday afternoon and ends on Sunday morning. Participation in Camp Yofi is accepted on a first-come, first-served basis and is limited to 25 families. Thanks to generous sponsoring foundations and individual donors the goal has always been to make Camp Yofi affordable to any family who wishes to come. Tuition for the program covers 25% of the cost of the program. The rest of the cost is subsidized through donations and grants. For those families needing additional assistance to participate in the program, a limited number of scholarships are available.

So that is a summary of Ramah, Ramah Darom, and Camp Yofi. For those who have heard about it from me the past 3 summers, I thought you might want more information. I got most of this information from Ramah and Ramah Darom's websites. Growing up I was not religious at all. Both of my parents grew up Jewish but my father was atheist and my mother was mostly non-practicing. I was named in a synagogue but I didn't attend hebrew school. I don't remember how it came up (Jewish summer camp) but my mother attended Tel Yehuda when she was a teenager and we discovered Sprout Lake (it was not around when she was growing up). Sprout Lake is for children and Tel Yehuda is for teenagers. When we were looking at camp I was still young enough to attend Sprout Lake and did so for 2 years until I aged out. I had attended another sleep away camp the year before and hated it. I loved Sprout Lake. I learned about Zionism and Judaism and it was fun! It is a typical summer camp in many ways in that you do activities you normally do at summer camp but we had services everyday. Shabbat was very special with special services and meals. Sprout Lake was my real introduction to Judaism. I still remember the prayers and so many things from camp have stuck with me all these years. I also made a very special friend there who I continued to go to camp with and came all the way from New Jersey to attend my wedding in South Carolina.

The thought that Joshua could have a similar experience at camp that I had was not something I had really considered. I believe that all children should attend camp, especially sleep away camp. Joshua got to do that without us for the first time this year! He attended Camp Burnt Gin, a summer camp in Wedgefield, South Carolina, for children who have physical disabilities and chronic illnesses. From early June until mid August, Camp Burnt Gin operates 4 six day sessions for 7 through 15 year old children, 2 six day session for teenagers, ages 16-20 and a four day session for young adults, ages 21-25. During the course of a session, campers have the chance to participate in a variety of programs such as instructional and recreational swimming, boating, fishing, arts and crafts, sports and games, fine arts, and nature study. Each cabin group has the opportunity to enjoy an overnight camping trip in which they sleep in the woods and cook their meals over a campfire. Staff members, in a ratio of one for every two campers, live with the children and assist those children who require help with their personal needs and participation in the activities. Camp Burnt Gin has two nurses in residence. Nurses are responsible for medication administration, first aid and overseeing medical treatments. Nutritous balanced meals are planned by a registered dietician and served to the children as part of the US Department of Agriculture's summer feeding program. Camp Burnt Gin provides a fun, safe summer camp experience to over 460 children who might not otherwise have the chance to attend camp because of their special health care needs. The Burnt Gin experience offers them an opportunity to meet new friends, develop recreational skills, become more independent and improve their self confidence.

So I loved the idea that Joshua could attend camp considering his special needs. Sprout Lake and Tel Yehuda was a way for me to learn about my heritage, make friends, and be away from home. Joshua was able to make friends at Camp Burnt Gin and I am grateful for the chance for him to go to camp alone as it is good for him as well as us. He was there with other children with various disabilities so while it is not inclusive not all children have the same disability so that allows him to be with children of all abilities. We were nervous about the idea of sending him and had lots of questions. We also included a "bible" we wrote as a sort of guide to him and his care needs. The counselors said this was very helpful. His counselor at Camp Yofi also read it and thought it was very helpful. At Camp Yofi we are with him for all meals and at night. The counselors have them during the mornings for 3 days and the afternoon that we arrive at camp. They do typical camp activities and rotate what they do but they always go swimming every day (one of Joshua's favorite things). In the mornings while he is with his group we are able to do different activities without him. The groups of children with autism consist of a counselor (called a chaver which is hebrew for friend) for each child and a head counselor who is a student at Nova Southeastern University in Florida. Yofi is run by Sue Kabot of Nova Southeastern and Susan Tecktiel who has been with Ramah Darom and has run Camp Yofi for all of the 14 years it's been in existence. Sue Kabot is the executive director of NSU’s Autism Institute, where she oversees multiple programs for children and young adults with autism. Her students are the head counselors for each of the groups for children with autism. There are typically 5 groups, Cochavim (hebrew for star) Aleph, Bet, Gimel, Dalet, and Hay. There are also 3 sibling groups, Perachim (hebrew for flower), Shemesh (hebrew for sun) Aleph, and Shemesh Bet. All the groups are based on age. The first year Joshua was in Cochavim Aleph and last year and this year he was Cochavim Bet. Next year he will probably be in Cochavim Gimel.

Each day (Thursday, Friday, and Saturday) at Camp Yofi starts out the same. Breakfast in the dining hall and then we drop the kids off with their groups for their morning activities. These activities rotate so that all kids (including siblings) get to have the camp experience. They go to the pool everyday and have snack everyday. They rotate through activities including singing, dancing, yoga, tower (which is a climbing tower but also includes a harness "swing" which Joshua did for the first time this year!), nature, art, cooking, and sports. The older sibling groups go to the lake and this year they added biking for them as well as for families during family time in the afternoons. The oldest sibling group (Shemesh Bet) also has their own evening programs and a camp out. They try to make it as similar to regular camp for the siblings as they can. We meet the kids groups at lunch and families spend the rest of the day together. The parents have their own programs in the morning. They get to do camp activities and have informational sessions about camp and about life in the special needs world as well as religious topics. The first session of the morning is a learning session and the second is more elective and parents can choose to do art, biking, tennis, cooking, lake, Krav Maga (Jamie & I did that this year) and they have a ropes course (we might try it next year). In the afternoons we are together as a family and they have lots of planned activities or you can do things like sports, pool, lake, art, or tower. Last year was the 13th year of Camp Yofi so we had a Yofi B'nai Mitzvah and this included a silent disco where you wear headphones so you can control the volume of the music but everyone listens to the same thing (it was very cool), magician, photo booth, and temporary tattoos. This year there was a Shabbat Fair where you could make challah, decorate candle sticks, make your own candles, and make challah covers. The planned family activities include cooking, pilates, yoga, Krav Maga, hikes to waterfalls (we did the shorter one this year), softball & soccer games. They also always do a tour of the Tikvah bunk. Tikvah is their inclusion program for children with special needs  ages 12-18 to attend camp during the regular sessions. The Tikvah bunk is air conditioned and smaller. They are a part of an integrated group with same age peers. Everyone has dinner together and then there is an evening family activity. Wednesday is always ooey, gooey, sticky night. Thursday is the campfire (we had to do this inside this year due to rain). Friday night dinner is late due to services prior to dinner so there is no evening activity and Saturday we do a family game night, this year we had family olympics. The schedule stays pretty similar year to year so families (and kids) know what to expect. We also always have a talent show usually Friday afternoon after lunch. After the evening activity parents put the children to bed and counselors come to where the families are staying and are stationed outside the rooms so parents can go to the evening activities just for parents. Wednesday night was wine & design (there is always food at these events), Thursday was a scavenger hunt, Friday was a celebrity guessing game, and Saturday was a competition event "anything you can do I can do better". I have to mention the food at camp is amazing. The counselors who have been at camp all summer always tell us that food during Camp Yofi is much better than regular camp food. It is fantastic and plentiful as it is buffet style and you can have as much as you want! They do put it up in the kitchen after a certain amount of time but you can still get some even after they put it up. After meals (lunch & dinner) there are two smaller rooms on each side of the dining hall (they call them playrooms) where counselors go to play with the kids so the parents can socialize for a bit and enjoy dessert (after lunch & dinner there is always dessert!). I think this was one of Joshua's favorite times and maybe his favorite thing about camp. It was also his main motivator to get him to eat his meals. He knew he couldn't go to the playroom if he didn't eat his meal. They have books and he gets people to read to him. Anyone who knows Joshua knows how much he loves books and having people read to him. If you read to him you are his best friend for life and he will keep bringing you books (sometimes the same one) to read. When we arrive on Wednesday afternoon we have an opening session which includes singing and then the kids go off with their groups for a shortened rotation and the parents are together to learn about how camp works (for newbies) and introductions. Each family gets a welcome kit with a folder with the schedules, maps, and names of all the staff, and a bag with snacks which is decorated by campers during regular camp. There is a sign on our door and a door hanger that we use to say when we are in or out (mostly used at night when we are gone to evening activities and the kids are alone in the room (we never leave until Joshua is asleep). We have singing at the campfire (and smores!) and then at the closing session as well. At the closing session each kid gets a paper plate award. The kids make art that we get to take home with us and this year one was framed for us with our photo from when we arrived at camp. Each year they make something different. There is a photographer and videographer who walks around all day taking photos and videos that are then put into a video and slideshow that we see at the closing session.

So that is Camp Yofi in a nutshell (okay, a rather large nutshell). Every parent says how amazing it is and the kids usually love it too but you really have to experience it to get it. For me, it is the staff that makes it amazing. They are truly wonderful people who work very hard to make the experience as magical as it is. Disney World may be the happiest place on earth but for me Camp Yofi is the happiest, friendliest, and most wonderful place on the planet with the most wonderful human beings you could ask for caring for your children. These are the type of people who should be working with our kids especially those with special needs. They are warm, caring, kind, patient, sweet, friendly, and amazing in every way. At every family activity staff who isn't actively participating form the human fence also know as the wall of love. That's really what it is. These people are love personified. Forget the fact that the programs are great and camp is great. Without these wonderful people doing what they do, especially those that work with the children and even more so the ones who work with the children with autism, it wouldn't work and it wouldn't be amazing. Every one that I've ever met has been the friendliest, kindest, and warmest people you could ever want to meet. Joshua has had three different counselors (chavers). Each one has been amazing with him. They are only supposed to be with them during the morning and meet back up with us in the afternoon as they usually are scheduled to do other things during afternoon times such as work at different areas of camp or lead different activities. This year's counselor was with us as much as we wanted him to be and was fantastic with Joshua. We did a walk to a waterfall and he carried Joshua for more than half the walk up to the waterfall singing to him all the time (one of the songs he sang was from Barney, the I love you song, how sweet is that?!). He was patient in reading books to him over and over again. He learned early on how much Joshua loves books and would take a book from the playroom with him wherever they went so if Joshua got bored or tired of waiting for something he had a book for him to look at or he would read to him. He had Joshua on a float in the pool (I sent my husband to spy on them once) and he just pulled and pushed him around the pool (Joshua can't swim). The only thing they could do to improve it is to make it longer. They start working on it as soon as the regular camp session ends so it couldn't start any earlier and this year some of the kids went back to school the day after it ended and they do need time to travel as many of the families come from Florida and those who drive have a very long drive (10+ hours for many). We are lucky it is less than a 4 hour drive for us. So that's it it; we love it, and we love the people who make it possible. Watch the video and the slideshow you will get just a small taste of what it is and maybe some of the magic that is Camp Yofi. Here is a link to last year's video https://www.youtube.com/watch?v=Km8YKFuJijg&t=2s
Here is the slideshow from 2016 https://vimeo.com/178770985.

9 years old!

Better late than never! Here is the slideshow I made for Joshua's birthday.

Happy 8th Birthday Joshua!

Happy 8th Birthday little man! We love you so much and are so proud of you!

Long Time No Blog

We have been busy. So what else is new, right? Joshua has been doing great at school. He settled right in with virtually no problems with adjustment. Me, on the other hand, that's another story. His teacher is pleased with his progress. We had a little parent-teacher conference in October and she said he is very go with the flow. I said are we talking about the same child? Ha! Recently he has shown her more of his personality as she said that he was starting to have an opinion, he doesn't always want to do what she wants him to do but they make it work. That sounds more like the Joshua that I know. In addition to school he is also getting ABA therapy at home, about 20 hours per week. During the week he is busy from about 7am to 7pm with time for eating and he does nap at school. That was very shocking to me as he has always been particular about napping but he is napping at school. Some days it's only a 20 minute nap, other days they have to wake him up and he gets about an hour. At home he is still napping the same, most of the time we wake him up after 90 minutes. I think he is just tired from all that he is doing. Right now there are 6 kids in Joshua's class, there were only 5 until this past week when another joined. All boys. They do spend time with the kids next door, another developmentally delayed class, and the kindergartners at recess and lunch. They also had a Harvest Day celebration at the end of October and spent all morning with the kindergartners. I'm sure I'm rambling but I'm just trying to get 3 months of activity into one post. He loves circle time, of course, and got an award for waiting his turn at circle time. He loves the days of the week song and will try to sing it at home and do the motions. I am always getting good reports (I get a report everyday) about his participation, hard working, that he is happy & energetic. Sometimes he even requests to go back and do more work! They have iPads in the classroom and that is his first activity of the day (they get to choose and he always chooses iPad). I know that he would not have transitioned so well without his first preschool and I am beyond grateful that he got that experience.

I got  progress report at the end of October and he is doing well according to his therapists and teacher. Physical Therapy -  He is transitioning well from his classroom to therapy sessions. He is participating well but does require verbal prompts for redirection (not unusual). They are trying to get him to jump on the trampoline but he is marching, we have seen him do it too, it's cute but not exactly what we want him to do. He is pedaling on the tricycle multiple consecutive revolutions but not consistently. He has already met some PT goals like standing from the floor or from a kneel position. Occupational Therapy - He has met goals of increasing use of dominant hand and finger isolation. I have talked to the OT (she's easy to communicate with) about his hand dominance since we thought he was left handed and she has seen him use his right hand and she is not concerned. She said to let him choose what hand he wants to use and she is doing that in therapy. It is possible he will be ambidextrous. He is making progress with lacing beads and holding and using a crayon. Only issue we are really seeing is with his eating. He does not want to eat foods that require a fork or spoon at school. I have left foods at school for him to try when he is interested and he has tried a few more than he had been eating but not much. I never thought he had a limited diet but I think he does. Not extremely so but a little bit. We have tried school lunch and he ate hot dog twice but nothing else so we aren't doing that right now. He has made progress in walking in the halls and cleaning up at snack and meal times. Initially he did not want to walk in the halls but now does it with verbal and visual cues. He is also cleaning up with verbal cues. He is not interested in using the potty at school. We are working on potty training at home, not full time but I would like to try maybe over holiday break. He will sit on the potty at home and he does go in the morning and after nap and some other times as well. He is making progress in social goals as well such as greeting others, playing with a peer, participating in group activities, and checking his schedule. He likes to wander so he doesn't always staying in the area he's supposed to be in. He's doing well with checking his schedule. They have to collect a laminated card that says check your schedule, go to their schedule, collect the first card available, and if it is choice time they get to choose an activity from another board. He does great with all of that. It's the next step where he has to get to the desired location that he still has trouble with. He sings along with songs but he is not consistently doing the same activity in the song when asked. This is true of counting, naming shapes, colors, and body parts. Speech - he is consistently exchanging a picture symbol for a desired item with 80% accuracy from a field of 6. He is producing word approximations for car, numbers 1-5, go (not an approximation though), help, my turn, and some colors. He is signing my turn, help, please and more. In ABA therapy he has 9 signs he uses consistently. All in all I'd say he's made some excellent progress in just a few short months of the combination of school and ABA therapy. He's also receiving PT, speech, and music therapy outside of school. His music therapist gave us 6 months of therapy while we are trying to secure funding to continue therapy.

In the last week he turned 5! I can't believe 5 years have gone by so quickly. But we have been busy and he has been especially. We specifically asked for no gifts because he is spending so much of his time in school and therapy that he doesn't have time for them. We did get him a portable DVD player that they use in therapy (as a reward) and he has gotten some DVDs. He's also gotten books and money to spend on iTunes for games for the iPad. He is doing great with the iPad, we've gotten some great apps when they've gone free. I highly recommend the website SmartAppsForKids.com. They also have a Facebook page. They do Free App Fridays where they put a list together of great free apps and everyday they do a free and reduced apps post. We have transitioned him to a bigger car seat as he had outgrown his convertible car seats. We got a Britax Frontier 90 that will allow him to be in a 5 point harness longer and then transitions to a booster. He is singing all the time. I know that music therapy has been wonderful for him. Just the other day his speech therapist was telling me that he was trying to mimic everything she was saying. He has said the whole of ready, set, go from which he used to just say go. He will try to sing along to just about anything. His verbalizations and word approximations have really increased.

As for the rest of us I am finished with school! I will graduate in February (the next available conferral) with honors and possibly Magna Cum Laude or Cum Laude. It has been almost 2 years since I started on this going back to school journey but it has been worth it. This past semester was full time and it kept me very busy but once Joshua was in school it was easier to keep up. Today is the official last day of the semester, all of my work has been submitted, and I am waiting on grades for one class. The other class I have received a final grade of A and I expect that of my other class as well. That will give me a GPA of 3.97 and should allow me to graduate Magna Cum Laude.

I'm sure I've left something out but I think this is long enough for now!

Updates

I have been meaning to sit down and write a post on here for a while. It's just been busy around here lately and I haven't taken the time. We have made the difficult decision to send Joshua to public school next year for preschool. He will be in a preschool class with 7-8 children ages 3-5 with a teacher and 2 aides. It is an all day program and I am concerned about that but his day will be busy and filled with activity that is good for him. It will require him to be more independent and it will allow him to learn to be more independent, both of which are good and needed. He will get PT, OT, and speech at school and we will continue as much outside therapy as we can. He will have some activities with other children as well as there is another preschool class next door and they do activities together. He will also have lunch and recess with other classes. He has been getting ABA therapy at home for almost 2 months now. Right now he is getting about 15 hours a week which we may increase when he has time off from school and after the transition is made to school if we feel he can handle more. He is allowed to get more but we are trying to ease him into and don't want to put too much on him at once. He has had success with it already and of course there have been some bumps along the way but he is doing well. He is doing more signing, vocalizing, and speech. He consistently signs more, please, and all done. None of which they are teaching him in ABA, they do more specific signs but those are ones that we have been teaching him for a long time at home, therapy, and school. In ABA this past week he signed puzzle and swing independently. He has many vocalization approximations, basically he says something that sounds like a word or phrase or he sings along with a song. Like when he signs all done he has a vocalization that goes with it. It doesn't always sound exactly like it but it is his way of saying it. I know that music therapy has helped a lot with his vocalizations and I have heard him in music therapy talking or singing along. It has been really nice to see these positive changes happening.

We have all been busy around here with the additional therapy and making decisions about next year for Joshua. I have finished 7 out of 12 courses for my degree! When I finish the one I am taking now I will have 1 semester left. It is so exciting! I am going to attempt to take full time classes for my last semester since Joshua will be in school more hours during the day beginning in August. If all goes as planned I will be finished at the end of November. Unfortunately with the conferral dates the way they are for this school I won't receive my official degree until February but that's okay. I managed an A in statistics, the class I just finished at the end of May. If all goes well I should be able to graduate with honors as right now my GPA is higher than the minimum required to graduate with honors. They actually have an official ceremony where you can walk if you want to but it is in Maryland and I'm not sure I will go. I want to but we will have to see. It was today, they only hold it once a year although they confer degrees 4x per year the ceremony is held in June.

Joshua's Music Therapy Recital and other things

Click here for the video of his Music Therapy Recital.

That was this morning. It's a good thing he was first because it was too loud in there and he didn't want to sit for any other performances. Oh well. He did a good job. Of course he normally says go and stop during therapy (I sit in the waiting room but I can hear him) so you'll just have to imagine it.

In other news we are all finished with his assessments for the school district. He did an OT, PT, speech, & psychological assessment and we filled out many questionnaires and and answered lots of questions. They will be doing one more observation at his preschool and then will be finished completely. The psychologist does not want to label him with autism so he will be labeled other health impaired. I'm ok with it for now, if it becomes an issue later on then we will deal with it. He would be placed in an autism preschool classroom likely all day all week. It would definitely be a change. He would have a teacher and two aides with 8-9 children. They use similar teaching to ABA so it would be familiar to him as well as things he is already familiar with like circle time. We would be looking to start in August and he would graduate from his current preschool in July. We're still deciding, next we will see the classroom he would be in. He is also starting ABA therapy soon. We've met the lead therapist and one of the line therapists and will be meeting the coordinator next week.

SmartApps4Kids iPad 2 Giveaway!

SmartApps 4 Kids is giving away an iPad2! Click the link below to enter!
iPad2 Giveaway!

Hello!

Busy, busy, busy around here! Going through the process at our school district for Joshua possibly attending preschool there next school year. So far we've done the intial meeting, and the hearing & vision screenings. Sent in the permission to evaluate so we next will be the evaluations and they will go to his current preschool to do an observation. We did the evaluation with our ABA therapy service provider. Joshua was approved for way more hours than he will ever be able to use so now we wait to meet with our "team". Coordinators (people who oversee services) and the line therapists who they likely have to hire although they are supposed to start us with someone who's had experience. I am still taking classes, almost halfway done with my courses at the school where I am now! I'm now 100 credits in and will have 6 courses left to take when I finish the I one I'm taking now! The reason I came on here was to share this - 100 Ways You Know You're a Special Needs Mom. The ones that I like the most are #s - 7, 10, 11, 12, 14, 15, 19,  31, 35, 36, 47, 51, 53, 55, 60, 67, 73, 75, 82, 89, 95, 99, & 100. Some of these more than others.

Joshua's 4 year portraits!

Click link below to go the slideshow of images.
Portait Slideshow

Joshua's 4! at OneTrueMedia.com

Make a video - it's fun, easy and free!
www.onetruemedia.com

Happy Birthday Joshua!

Free digital collage created with Smilebox

Happy 4th Birthday Joshua! I look back on these 4 years with amazement, you have come so far and taught me so much! I am reminded of what's really important in life because of you. People, love, life, experiences. You have made my world a brighter place!

Thankfulness

This is the time of year we are supposed to remember what we are thankful for. I sometimes have trouble with this as I am thankful for things but it reminds me of all the challenges Joshua has. So I think rather than make this about all the things I have to be thankful for I will just write an update about Joshua. His progress is something I am thankful for.

Unfortunately, the foundation that provided funding for Joshua's 6 months of music therapy has decided he will not be receiving any more. They did agree to let him continue for another month so he could finish out the year. That gives me more time to try to find funding elsewhere. I have already applied to two other foundations and I am waiting to hear back from them. Also a possibility is that with a job Jamie is doing he may receive a small payout, personally, and if it's anything substantial it can go to pay for music therapy.

The biggest strides, I am happy to say, have been verbal and cognitive. Of course he is still working on gross motor and fine motor but since he started walking the gross motor goals have lessened. He works on balance a lot at PT and he does really well with fine motor. He is on a waiting list for OT near where we live since for the longest time he has gotten OT out of town at a great place but we are looking to move it closer to home because he will be getting ABA therapy soon! We just found out that his number came up on the PDD Waiver which means for the next 3 years he will get ABA therapy. We had to say goodbye to his early interventionist who had been with us for almost 3 years because he has to move to service coordination because of the PDD Waiver (ABA therapy). We meet with our service coordinator next week to start the paperwork and process of him receiving ABA therapy.

On to the progress as I said he has been doing well verbally. He is actually saying some words now! I am constantly hearing from preschool about words he says, he doesn't do as much of it at home but he is doing a lot at school and hopefully that will transition to his new school next year. He is counting at preschool, one note said he counted to 15 with help from a teacher! I have not been able to get him to do this yet but they said to try with him on the potty, that's usually the best time for him to count for some reason. The one thing he is doing consistently everywhere is saying go. It started with us saying ready set and he says go and now he will imitate go from the tv, from music and from us!  He is also doing really well with music therapy which is why I hope he can continue. He is doing a lot of verbalizations there, a lot of copying and filling in the right sounds in songs.  It has been really great for him! I love it when something like this works. I just knew from that workshop on music therapy that it would be great for him and it has been.

A link to a wonderful video and update

Wow, it has been a really long time since I've done any kind of posting here. Just been busy with life. I don't know if I ever mentioned it but I have gone back to school, online! I'm taking online classes so add that to everything else already going on and I'm a bit busy but it's good and important so I'm dealing with it. I'm determined! Joshua is doing well. He has been going to music therapy since May and will get to do so through October at least. The foundation gave him 6 months and then will decide if he gets more. We decided to add another preschool day for Joshua this year. So he is going to preschool 3 days a week, he's also getting PT, OT, SLP (speech) and music therapy so to say we are busy is an understatement. Oh and he's doing horseback riding as well, not every week but a few times a month. So far so good with the new schedule, we've done 2 weeks of it and he's doing well. We had to say goodbye to his SLP 2 weeks ago because of schedule change and because she doesn't see kids past 4 and somehow Joshua will be 4 in November, not even talking about that yet. I think it's really that she doesn't see kids past age 3 but just kept seeing Joshua. So when we decided to put him in preschool 3 days a week we had to make some schedule changes and knew that we would be switching anyway so decided to go ahead and do it. His new SLP seems nice but she'll never take the place of the old one. Oh and last month Joshua got to meet his Uncle Tony (my brother) for the first time! It was such a wonderful visit and I'm so glad it finally happened. We went on vacation to the beach in June and had way more rain than sun but we go away to the mountains in 4 weeks so hopefully this vacation will make up for it! (fingers crossed, knock on wood!)

Okay now for that video. I just came across it today and I can't really describe it just that if you are in the special needs world or know someone who is or work with families that are then you should watch it. I think really whether or not you've gotten a diagnosis it's relevant. It's about what you would say to yourself on the day of your child's diagnosis or I guess what you say to yourself back when you first found out something was different about your child. The Extreme Parenting Video Project by Elizabeth (no, not me)

Music Therapy Update!

Last month I posted about the Family Connection Conference and a music therapy workshop I attended. I was determined to try to get funding so Joshua could get Music Therapy. A friend told me about The Lindsay Foundation, she has a child with special needs and has received funding from them for her son's specialty therapies and equipment. I decided I had nothing to lose and everything to gain so I contacted them, filled out a form and waited. They said they had a meeting mid-April during which they would review requests and make approvals. I got a call 2 weeks ago from The Lindsay Foundation that they had approved my request for Joshua's music therapy! I couldn't believe it! They said they had never approved a request for music therapy before but they had received some. I don't know why they chose to approve Joshua's request but they did. He is getting 6 months of music therapy starting this month and they want a progress report in 90 days.

I immediately contacted Natalie at Key Changes Music Therapy, the one whose presentation I went to in March, told her that Joshua was approved and scheduled our first session which was today! The first two sessions are assessments and one of those was today. She does one session with the parents and one without, since Jamie went with us today and he had never met her before we did this session with us in the room. It went great! When we got there Joshua was a little hesitant at first but once he saw the room with all the musical instruments in it he went straight in there. They played with drums, bells and maracas but Joshua discovered his favorite instrument pretty quickly and it was no surprise, the guitar. As soon as she started to sing and play he was happy. After a few songs he started dancing, bouncing and smiling. He only came over to me once, he would have been just as happy without us there. I was thrilled but I had a pretty good felling it would go well. Every time she put down the guitar to try to get him to play with something else he went right back over to it. She wanted him to strum it, he would grab her hand and try to make her strum it. It was so nice to get that confirmation that I was hoping would happen. It just fell into place like it was supposed to, it felt like it was meant to be. Since this is a rare thing in my life or at least feels like it is when it happens I have to try to be as grateful as possible.

Music Therapy

Two weeks ago I attended the Family Connection Conference. All of the workshops were great. I went to ones about assistance dogs, stress management, ABA therapy techniques, The Anat Baniel Method and sensory activities. They were all very good and informative but the one that stuck with me and I have not been able to forget was about music therapy. Prior to this I knew nothing nothing about it, not what it was or anything. I quickly learned in that 1 hour 15 minute presentation what it was and I wondered how did I not know about this, how come no one told me about it and how do I get Joshua into it. Not just it but I was enthralled by the therapist, she runs her own practice. So not only do I want Joshua doing music therapy but I want her doing his therapy. Unfortunately it is not something that insurance covers. Joshua gets physical, occupational and speech therapy all covered by insurance. Music therapy is new compared to these types of therapies, hopefully it will soon be covered by insurance. Until then it is an out of pocket expense. I have already contacted one foundation about getting funding and Joshua's Early Interventionist told me about summer support funds that the Department of Disabilities and Special Needs gives out for children with special needs to go to summer camp. We will be applying for these funds to get Joshua started with music therapy (I do not know how much we will be able to apply for or receive). I have also started a FundRazr to raise money for this. I am planning to ask family and friends to donate instead of buying gifts for Joshua's birthday or Christmas/Hanukkah. I don't know if that will work but I'm going to give it a try.

Music has always been something wonderful in Joshua's life. From the time he was a newborn when he was upset especially in the car I could put on a certain song from a certain CD and he would stop crying. Once when he was getting an x-ray and had to be still I sang to him, that was all it took. Now I can sing to him and get an immediate smile. Music has also been how we have gotten the first imitations out of Joshua most recently he quacked at preschool to a song, he can (when he wants to, like everything else) go EIEIO in Old MacDonald, I taught him how to do Ring Around The Rosie and he was doing DA for down at the end of the song and it all comes back to music. It was immediate for me upon learning about music therapy, I want to do this for Joshua. The possibilities are endless. Now we just have to figure out how to make it happen. Here is the link to the FundRazr

iPad and other news

I wrote this post a few days ago and then forgot all about it. Oh well, here it is.

Joshua is playing more with the iPad with some apps that I picked out for him. We took some videos of him playing last night with 2 apps; Baby Games - My First Shapes and Match It Up. They are all 4 of the Joshua on the iPad videos. You can see him actually learning with the Match It Up game, he gets the shapes right sometimes and this is just from playing it. Yes, I have to help him but he is learning to match the pictures and how to drag the matching picture to the one in the middle. He is also learning with the shapes game, he doesn't always get it right but he knows that if he gets it wrong to choose the other picture. We also keep playing, these and other games, repetition helps him learn. www.youtube.com/user/JBrown2218

Joshua is learning to clap and to imitate clapping and other things. Some shows he watches the characters will clap, mostly in certain Wiggles songs and on Play With Me Sesame. I have just recorded one episode of Sesame where the characters ask you to clap with them. Joshua has done this independently before. Of course when I got out the video camera to record him doing it he wouldn't do it. He is also imitating motions during circle time at school. Most of the songs they do during circle time involve motions, including sign language. Joshua is starting to imitate the hand motions in the songs.

Update

I wrote this yesterday and then never posted it oh well, here it is.

Thought it was time for another update, the last week has been good. First we stared trying to get him to use a straw. I bought a cup where you squeeze the cup to get the liquid to go up the straw. So he learned that he gets liquid through the straw. After doing that a few times he actually sucked juice up the straw! So I tried a regular straw cup and he got it! He can now suck through a straw! This is a huge milestone. Straws are very good for oral motor development, help strengthen his facial muscles and get him to use muscles he hadn't used before.

Another thing we decided to try working on again was getting him to feed himself with a spoon. In the past whenever I had done this he had gotten upset and sometimes didn't even want to finish whatever he had been eating. So we tried it at OT, she handed him the spoon and he grabbed it with his left hand and fed himself! He knew just what to do, to dip the spoon in the yogurt cup and put it to his mouth. Like he had always been doing this. I LOVE it when he surprises me like this! He doesn't always want to do it but he CAN do it so we just have to keep encouraging him.

Earlier this week we went to the AAC (Augmentative & Alternative Communication) Resource center. The reason we got the iPad for Joshua was so that one day he would be able to use it to communicate. So I wanted some guidance with choosing an app or something else to get him started learning to communicate with something. She gave us lots of great information and she was very positive about Joshua's ability to learn to communicate! I love hearing positive things about him especially from a professional (she is an SLP - speech language pathologist who specializes in AAC). She was not very positive about the iPad though, she thinks our best bet is to go with something low-tech. I did mention an app I've been looking at and she e-mailed me later on about it and said that looked like a good possibility. She also gave us a photo book that we could fill with photos and picture cards. The app is Verbal Victor, if you know anything about it or have any other suggestions I would love to hear them!

Last night was the Christmas Party at Joshua's preschool. They had one last year too but we didn't go because it's so late, it was late this year too but we went anyway. It's from 6:30 to 8:30, we left around 8 and Joshua didn't fall asleep until after 9 but he had a great time! It was a rough start. We got there right at 6:30 but very few people were there, his teachers were there but not many guests had arrived yet. Joshua got a pouty face and then started crying. So we took him outside to calm him down. When we came back in lots more people had arrived with their kids so Joshua was happier. He loved watching them all run around and trying to chase them. He ate and ate and ate! He even sat on Santa's lap for a few seconds! Long enough for one of his teachers to get a photo and she got a good one! Of course he was smiling at his favorite teacher, she got him to sit still and smile for a minute, he has good taste as she is young and pretty she's even a ballet dancer! He flirted with her all night!

Videos

Just uploaded new videos.