Friday, October 20, 2017

Feeding therapy Miracle

It has been over a year since I posted anything here. Life has been busy with both boys, Abe is 8 now and Luke is 4. In 2014 Abe had the SDR surgery and made significant progress. Then we addressed the constipation problem. We saw some improvement with eating once the chronic constipation was under control in 2015. My last post was in 2016 and it was mostly about meal time, the refusal, the throwing of food and drink and the affect on the family. It really impacted us daily even Luke is smart enough to see and hear the meal time stress. Well that all changed when a community speech therapist started feeding therapy with him in 2015. She saw very little to no progress. It was frustrating getting both boys up and ready and driving one hour for feeding therapy and he did the same behaviors he did for us. She went to college on the east coast and knows a great program, Kennedy Kreiger Institute in Baltimore, Maryland. They are world renowned for their intensive inpatient behavioral based feeding program. She recommended this summer 2016. It was very difficult to get it approved by health insurance. No local programs could provide the type of feeding therapy Abe required in our area. Even a program in California denied him access to their program indicating his needs were beyond what is required. Finally after pulling out mamma bear more than one time an evaluation authorization to KKI feeding disorders clinic was approved. Since Abe has autism, requires an adaptive potty seat, medical supplies for his daily care and a wheelchair my family made a cross county road trip from Seattle area to Baltimore, MD. We left on a Thursday around 8pm, yes 8pm because you know we had to make sure we had everything we would need for a cross county trip for 4 people and of course our battery was dead on our van.   Thankfully my husband is prepared though, he had a portable charger.  We arrived after 7pm on a Monday and returned home late Sunday night. We saw many things along the way. In Montana the speed limits are very fast limits and people can smoke right next to the doors, yuck. WY we encountered rain and wind but a whole lot of nothing. South Dakota had beautiful blue skies but lots of wind. We did most of our driving at night. I pads, DVDs and glow sticks and snacks were a life saver. In Indiana, PN and OH  I 90 required you to pay tolls but the rest stops were fancy and the Starbucks reminded me of Seattle. We finally arrive just as we hear gun shots and bam a cop car zooms by right near Ronald McDonald House. KKI shares the space with John Hopkins but it is inner city but great care. We stayed 2 nights at Ronald McDonald House for the evaluation appointment.  The appointment was exhausting, 6 or more people watching me offer Abe food. They see exactly what they needed to. He was deemed a great candidate for their inpatient 8 week program. We were supposed to go for the 8 week stay December 2016 however insurance denied the treatment. We decided to appeal it. Some of the professionals that work with Abe wrote letters supporting him to go to KKI. We had the KKI lawyer appeal the denial. It was denied again at the appeal level. My family even Luke were at their wits end over all the negative meal time behaviors. Luke often would often act up during meal times because the focus was all on Abe. Momma bear came out again in March when it denied at the appeal level. Then it was approved quickly. Yes finally my son would get the medically necessary treatment he needs. We were scheduled to go May 1 but would you believe Abe's VP shunt that was put in 2009 was blocked and he required emergency surgery on April 26, only 5 days before our flight. The Seattle doctor assured me that he would still go but the KKI doctor said no we need to wait to ensure of surgical complications. Abe recovered quickly then on May 24 we flew to the east coast till July 20. Abe did amazing things there he did fight the feeding therapists but quickly learned they won't react and they won't give up. He chose to self feed the apple sauce (is not a preferred food) to avoid finger prompting of apricot (also not a preferred food). Would you believe he fought a little but quickly gave up and the therapists won. He self fed the apple sauce. He made progress quickly, quicker than I expected but it was not an easy road. They slowly integrated parents into taking over what they were doing. We rotated who is with Luke and who is with Abe. The boys enjoyed exploding John Hopkins, beautiful campus. KKI inpatient needs to be redone to better accommodate children in wheelchairs.  Everyone was very kind, professional and he received the care he needed.He gained 7lbs, was taken off iron supplement and vitamin D due to increased nutrition. He will eat and mostly self feed fruits, veggies and other foods he would never touch or let near his mouth. They also desensitized him to an electric toothbrush. The dentist was impressed by the increased in his dental hygiene. Everyone is impressed by his total change in eating and drinking. It is not without stress, he still throws food and drink but significantly less than before and seems to be provoked when Luke is jumping around or misbehaving. Abe is in 3rd grade now and in his picture he looks so grown up and mature. Now if only we can get his sleeping better. He wakes up screaming around 2 or 3am unless he is in my room. Most of the time is because he can't find a toy or wants a drink. Sleeping issues and academics are the next goals I want to tackle. Just hope it is not as draining as getting him into the feeding program. Luke is having a hard time and will be evaluated again to rule out any sensory processing disorders or other behavioral issues. Okay this is just rambling now. Luke fell down the stairs while running at the Y today and a nurse will be calling me to check on him in a few hours so I am just staying up. He is tired but it has been a long couple of weeks. I will probably update again to give more details about just how amazing KKI was.

Tuesday, June 21, 2016

2016 update

I have not posted in almost 2 years, wow time has just flown by. Abe had the SDR surgery almost 2 years. He has tremendous process since. He is able to walk with a walker with stand by assistance to ensure he does not fall down, side step holding onto tables, rails,ect. He is tolerating standing for longer periods of time. He still primarily uses his power wheelchair but recently wanted to use his walker for a Hike It Baby walk. I was so proud of him for wanting to do that. He also did a kids run on the military base in the rain. Eating is still a huge struggle. I am working on getting him a referral to a program in California but it has not been an easy task. He is currently in horseback riding. He also enjoyed 1st grade and AWANA. His favorite Bible verse is Ephesians 6:1 "Children obey your parents". He will often remind Luke about this one. Luke is almost 3 years old. He is very fast at running and enjoys playing outside and swimming lessons. I felt compelled to update this to vent a little. Luke has not had a normal life being a younger sibling of a complex kid. I do try to do things like swimming lessons, park time and preschool for Luke. He is very big for his age which brings me the whole I need to vent part of this blog. He is 2 years old but the size of a 4 year to 5 year old. He screams, kicks, hits, cries ect. He has great verbal skills but being 2 years old he can't always verbalize what exactly he means. Today he called mashed potatoes "tomatoes". I did not have any tomatoes and I was incredibly stressed trying to help Abe eat and not throw his food. Yes by 7 year old throws food. It's annoying and frustrating and I am at my absolute wits end about it. Luke copies some of Abe's undesired behaviors. Meal times are very stressful. To all those in the community that have had a negative comment or judgement to place about my parenting skills, my kid's behaviors YOU HAVE ABSOLUTELY NO IDEA WHAT THEIR LIVES ARE LIKE SO STOP YOUR NEGATIVE COMMENTS AND JUDGEMENT, that's God's job not yours. I know I am not the only parent that has had negative suggestions or comments made. Mommas are sleep deprived so please provide support to them rather than tear them down or their children. My kid is 2 not 4 years old and he often is riding in his cars seat for hours daily for all of his life to and from therapy appointments, two and from medical appointments for his brother.  For one minute I just ask that you think before you speak to any parent or kid negatively. My 2 year old was screaming at the check out but before you place judgement "that kid needs a spanking", "that kid needs to be taken outside and beat", ect get all the details the punishment for misbehaving was not getting a sand toy which caused the screaming. I completely believe in punishing and yes the screaming was absolutely annoying but trust me for my kid in that situation not letting get the desired toy will have a lasting effect over spanking. He will remember and probably tell me "I did not get the "race track" because I kicked you and screamed". A spanking would have not had a lasting memorable effect on him. So yes I did punish my child but when did what punishment a young kid received become everyone else business any ways?  I also believe in rewarding good behavior and then I am hit with the notion "heck no" expected behavior "keep your food on the table without throwing" is not rewarded. I am learning my boys are very reward motivated. Don't adults or young adults go to work for the reward of earning money and 401K retirement plans and health insurance? Then how is rewarding good behavior for a young child different? I am seriously considering wearing ear plugs so I don't hear other people's negative comments. Even at a bagel shop in Seattle today the lady behind the counter rolled her eyes at the energy my boys had at 615am. They were in their car seats for 2 hours so yes they were probably ready to be wild. I still ordered food there but seeing her reaction to the busyness of my boys made me not want to ever go there again. I should add they were not throwing a fit or screaming at all then either, just running around. I have encountered this lady before there and I never saw her roll her eyes at my in the past. I assume kids are welcome there, I did not see any signs that said otherwise. Maybe I need to have Luke re-evaluated by developmental pediatrician to be sure there are no sensory or other issues that would explain his behaviors. Possible a 2 year old that is constantly in his car seat for his siblings appointments would naturally be more likely to run around a building. I know some days he request to sit watch movies or play with legos. Maybe boys are just naturally all over the place in stores at age 2. If I don't have him in a cart, stroller or a baby carrier I find I am constantly bringing him back to the check stand. Possible with practice he will stay next to me in a store or maybe he just needs more maturity which comes with age. If he continue to scream, hit, pinch and kick as he gets older than there is definitely a problem. That's all I can update now. No idea if anyone even reads this any longer.

Saturday, December 27, 2014

Christmas Letter 2014

In case you have not noticed we have not sent out Christmas cards yet and it's already December 27. I just could not decide on a picture. I thought about one taken in September but I prefer a recent one of the boys because they have grown so much. Since our schedules are so busy we just have not taken time to take the picture. We might send out New Year's card. Here is our year. The two major words that come to mind to describe our year are change and BUSY. Glenn retired after 20  years in the Navy in October. He started working at Boeing in July. Boeing is about an hour away but he is part of a car pool so this saves some time. He enjoys gardening and built more raised beds for our garden. He also got his Ham radio license. He is still learning about the Ham radio. I am busy managing all of Abe's appointments and advocating for him to receive the services he needs to maximize his potential.  I also attends a women's Bible study at church but rarely get the homework done. Abraham got a power wheelchair in June, had surgery in August, selective dorsal rhizotomy. The surgery requires a lot of physical therapy. The therapy schedule was five days a week and currently is three times a week. He has made progress however still requires Bacolofen for dystonia. He started kindergarten in September but misses a lot due to his outpatient therapy schedule. He might require surgery on his hips too because they are out of socket. Hip problems in children with CP is common. He is still recovering from the SDR surgery so we opted to have the x-rays repeated in 6 months then decide if the surgery would be beneficial or necessary. The SDR should have helped loosen his muscles to prevent the hip from pulling out of socket but unfortunately the damage has already been done. When he is a teenager and young adult he might have pain and osteoarthritis in his hips. He seems to enjoy school but on occasion does not want to go to school. He currently is not receiving ABA therapy or respite care. I am working on getting ABA therapy for him again. The respite care was only for active duty military families. However he did qualify for a personal care provider. We met the new care provider on Monday. It will be different than respite care but still someone to help care for him. This will allow both kids to get the attention they need. Luke has grown a lot and went from barely crawling to running, jumping and climbing. He talks and signs a lot. He likes to eat fruits and vegetables. He loves dogs and airplanes.

Friday, December 5, 2014

Apologize letter

Dr. Sir at Kersey Mobility,
I heard you come in and complain to the quite couple, one in a power wheel chair and his wife. I stopped chasing my 16 month toddler around the show room vans with nifty ramps that he enjoys running up and down on to move my stroller. The stroller was blocking seats since it next to my disabled 5 year old that was quietly watching elevator videos in his power wheelchair. I said nothing to you just moved my stroller so if you wanted a comfortable seat you had 4 to choose from. I was not sitting down for any extended period of time any ways. You still sat in the less comfortable chair.  My toddler lost interest in the demo vans and ramps and found his brother's power wheelchair buttons, the horn and the power button. I repeatedly told him no that's your brother's chair we don't play with it. I pulled the safety brake on the chair so it would not move and to prevent any injury to anyone. I picked my toddler up and he became to scream in a very high pitch scream. I get it no one wants to hear a kid scream but your response "Oh please" and the tone used and the eye rolling just drew my last straw. You have no idea what my kids and myself had already encountered today, an hour commute one way, an hour long PT session followed by an hour long ST session. Yeah no fun for a healthy, full of energy 16 month old boy.  I let him run up and down the stairs at the therapy center plus I gave him snacks and lunch. The sweet boy was sleeping soundly when we arrived to  have the power wheelchair lift fixed. I tried my best to not wake him up when I transferred him into the stroller. It was successful until he heard phone ringing and people talking. This was a few hours before you arrived. This was our 3rd time there since it broke in October and our 5th time since August. The mobility place is not a fun place to entertain kids but I tried, letting him burn off energy prior to arrival, snacks, lunch, toys, books and hiding from him on the other side of the van which made him giggle.  I tried to nurse him too but he is easily distracted. The screaming was probably your last straw too. You probably have as much if not more stress caring for a disabled spouse and I do caring for a disabled 5 year old and a toddler. It's not easy caring for a disabled person 24/7 young or old. When you said "oh please" and rolled your eyes I commented back "he's only 1 years old" and "he already sat thru 2 appointments". You told me "enough" but I was not done so I continued to comment "I bet every single adult in here has screamed and thrown a fit at one point in time or another" "yeah but that was a  long time ago" you added. I added "how it's not easy to entertain children here and since it's raining there is not much I can do". I said nothing more but offered to go outside if it was not raining and that there is not much I can do he wants to play with the buttons on the power wheelchair. You started cussing at me in front of my boys. I told my children that we would wait outside and risk ruining our expensive power wheel as long as no one is smoking outside. You got up and went outside. The office staff let us go into an office. I put my toddler in my Tula in an effort to keep him from running around and screaming. He was tired and over stimulated by this point. I am sorry I kept explaining. You were probably there today because the device you use to transport your disabled wife was not working probably.Although the staff is nice and they have pretty Christmas decorations up neither one of us were there because it's fun. If you had said something like "poor kid must be tired" "he is probably bored" "is he hungry, ect" then momma bear might not have came out. I did not use profane language but just wanted you get a small glimpse why my 16 month old was upset. He wanted to play with power wheelchair. Even before he started screaming you seemed angry and stressed. The device for your wife probably was broken since she was not with you. It might have been the only break you have had all week from caring for her. Again I apologize my toddler started screaming. I should add to those reading this Luke did not scream for an extended period of time, just a quick screaming session while saying "no, no".   If they had weekend hours I would have my husband bring the chair and the van in without my kids but unfortunately they are only opened Monday-Friday normal business hours. It's only 10 minutes from where Abe has PT, OT and ST so although not super convenient to bring both boys  plus Abe misses school, it is convenient that we are already in the area. Although you don't have any children yourself please remember you were once a kid yourself and your probably would not have enjoyed someone telling you no to playing with the electronics on a power wheelchair. I hope you got the device on your vehicle fixed so you can transport your wife. I also commend you for sticking by her side even with a disability.  I have no idea the extent of your wife's disability but given the vehicle you brought in and because a place that manages accessibly lifts for wheelchairs I can imagine she has extensive disabilities.  That's it for now. You will probably never see me again and won't have access to my blog but I felt in my heart I needed to get this out. My next blog post will be about barriers to care. Yes having dual insurance is a barrier to accessing ABA therapy. I will post this something this week.                                                                             

Saturday, November 29, 2014

Thankfullness 2014

I probably should be sleeping or cleaning since every one is sleeping but I am typing this instead. Since I have had children I am not too great at sending thank you cards. Please don't take it personally. I actually have some on my desk that I wrote out, addressed but never mailed. I don't really like my handwriting too much so this task is difficult. I have no idea if anyone can read my handwriting, if I got too distracted by something I might missed a word,ect. I really do appreciate everything friends and family for all their support towards my family. I appreciate everyone that was there to support us during the difficult time with our 2 lbs 2 oz baby boy, Abraham. People jumped in like we never even left and came back 2009. We also appreciate the support given when Glenn was deployed over seas for one year shortly after Abe's 1st birthday, the baby showers that have been given for both boys, the meals that families have prepared when I had a surgery in 2010 and 2011 and when we brought Abe home in 2009 and Luke in 2013. Also the trips to Seattle friends have made to support us when Abe had inpatient stays. We appreciate being able to stay at the Fisher House during Abe's many inpatient stays. Those that have babysat when I had medical issues myself and those that have agreed to watch Luke so I can give more attention to Abe at his appointments. We appreciate the nurses, doctors, other medical professionals (PT, OT and ST) and teachers that have helped maximize Abe's potential. I am thankful I have the education, knowledge and assertiveness to advocate for him or to find a resource to help me advocate for him. Abe often tests my patience limits and can be aggressive towards me and Luke but I am truly thankful that he is here. The aggressiveness really worries and concerns me. He is getting stronger, bigger and is actually 36 lbs finally at almost 6 years old. I have been praying that his aggressive, violent behaviors subside. What is interesting is he is a prefect angel for other people other than his parents and brother. I am trying to get his constipation under control which could potentially cause some of the tempers. I am also working on getting him ABA services again. I still need to fill out the paperwork for the new company. He is using sentences now and throwing in some sign language too. Other times he has a difficult time expressing himself. I often hear "I need to poop or use the potty" but it is an excuse to get out of necessary tasks like eat dinner or go to school. No idea what excuses he will have when he is a teenager. This week he saw neurodevelopmental ARNP. She was very impressed with his ability to sit on the exam table without a lot of support. I was so worried about the surgery because it involved cutting nerves in his spine which can not regenerate. Over all we are very satisfied with the results and have no regrets. The only difficult part is managing a very busy toddler at appointments. I don't blame him it is probably very boring for a sibling especially at the medical appointments at Seattle Children's. It is   not the norm to have a 2 hour round trip commute. Most other toddlers might attend a play date, go to story time at the library, stay home with a caregiver most likely the mother, then eat lunch and have nap time. The only regret I have about the surgery is I wish we had done it sooner but Abe did not show the criteria that was necessary for it. Seattle Children's does not just preform this procedure on every kid with CP and tight muscles. I absolutely don't regret having a second child but it is a lot to manage. When the boys mature and get older it will be easier to entertain them at the appointments. On occasion Luke is part of Abe's PT sessions. It's actually pretty cute at Mary Bridge when Abe rides the trike down the hall ways and Luke runs in front or behind him. It is still a commitment on my part as a mother to drive him to and from all his post surgery PT appointments.He still requires the muscle relaxer Baclofen but only once a day now instead of twice a day. He seems to be getting stronger every day. I finally got him to ride his trike last weekend. Since he crashed it in September it was difficult to convince him to get back on it. He is willing to ride a trike at PT sessions but not at home. I probably should get some sleep now. There is a lot more than I am thankful for that I am sure I will remember right after I hit publish on this.

Monday, November 17, 2014

Advocating never ends

I am thankful Abe is doing so well now. He is getting stronger, able to pull himself to a standing position again. He started using a reverse walker although he still needs to build strength for this. The decreased PT to 3x a week instead of 5x a week has helped the family. I am able to make real food on occasion, although dishes and laundry are still backed up. Abe seems to be adjusting to school better now too since he is there at least 2 full days and half days the other 3 days. I finally got the Paratransit Services situation taken care after having a long telephone conversation with the regional manager. He was very helpful and kind. Last week I spent my time figuring out why his Medicaid coverage would be terminated at the end of the month. I made countless phone calls only to just end up getting no where. One lady even hung on me, I even heard the phone slam down. I was not yelling or being mean. I just was explaining who I already talked to and what exactly I needed to do. The mix up was because his DDA case manager had his coverage transferred to another program so he can receive the 80 hours a month of personal care. She had no idea it would be this difficult. I opened the letter on Sunday and by Thursday morning I called again and was told it was changed over and he won't lose coverage. This has been a huge blessing for us because the cost of all his medical care adds up quickly, the fuel, bridge toll, for those of you non Washington people the bridge toll is $4.50. This does not sound like much but when you drive over it 3-5 a week it adds up quickly. This is the discounted rate too, if you pay by mail I think it's $6.50 and if you stop at the toll it is $5.50.  If in the Washington area, anyone reading this is interested or knows someone interested in providing care for Abe he qualified for 80 hours a month of personal care. The person has to be over the age of 18 however. Since we lost respite care upon military retirement this would be nice to have. Back to the title, advocating never ends. I got the Medicaid stuff situated finally now to get him ABA service back. You would think getting ABA service for your child with Tricare insurance it would be simple especially since he has received it since summer 2012 from the same company but it's not. I had to make lots of phone calls to the autism case manager with Tricare, the ABA company and email the provider at Seattle Children's Hospital plus make an extra trip to Seattle for Abe to have IQ and Vineland testing done. The Seattle Children's Hospital physician confirmed an autism diagnosis. When a family retires from the military they lose respite care and ECHO (extended health care coverage) for their special needs kid. A few years ago ABA was not offered to retired military families but parents put their feet down and now it is. Since Abe has Tricare and Medicaid, the ABA company has "limited availability"  and he is on a wait list. I understand companies need to make money to pay their employees, pay for the mandatory health insurance, ect but if a child has a medically necessary need then it needs to be met. I did hear that a lawyer is working on cases for children with autism and Medicaid coverage. Not specifically for my son but for every autism child that has state insurance. Tricare authorized ABA services however I don't think the company wants to take him on as a client again because legally they can't ignore and not bill both insurance companies.  The ABA company did not verbally nor in writing share this information with me. When I tried to get Abe the testing that Tricare requires  for retired military families to receive ABA therapy at CTU in Puyallup since he is an established patient with PT, OT and ST they would not able to because of his Medicaid coverage specifically saying we legally can't ignore that he has the coverage but if he only had Tricare we could schedule and test him. I assume laws that apply to one facility apply across all medical facilities and services. A case manager gave me a long email of resources to advocate for he gets ABA services again. So I have another thing to spend my time doing research and advocating for Abe. He probably really has no idea what I do for him. There are days I wish I could just have a normal life and not spend on my time making phone calls, sending emails/texts and typing out letters all to maximize his potential. I know parents have to advocate for their typical kids but you truly have no idea what advocating for a medically complex kid is like until you have done it. Abe will see neurodevelopment this month and orthopedic surgery next month. His hip is still sublaxed. I really don't know if surgery would be warranted or not right now but based on his x-ray he will be seen in December instead of March which is the next availability. Not sure if this is good thing that the doctor is wanting to see him now or if it's because he is post SDR surgery. On a positive note I asked if appointments can be combined at Seattle Children's and they called me today to schedule both rehab and pulmonary for the same day and although it will be in February instead of January, only one week later than they offered I chose the 11am time so I don't get stuck in 3 hours of traffic. Hopefully it won't take 3 hours to get there but I assume most people would be at work by 1045am so we should be fine.  I still plan to add extra time just in case.  We will plan to combine neurodevelopment and neurosurgery on the same day too if possible. The neurosurgeon felt his VP shunt is functioning well enough for an ARNP to see him for his next annual MRI and reprogramming appointment. His shunt is almost 6 years old but still functioning well. Eventually he might require surgery for a new one due to failure and growth. I heard it's rare for it to function this long without needing to be replaced. We have a lot on our plates right now please pray that his shunt continues to function well and no surgery is required. Other children are frequently having VP shunt difficulties and are in the hospital for it. Seattle traffic in the dark and rain just stresses me out and I really don't want to do it again. I thought I could handle 8am and 9am appointments but not if it takes me 3 hours to get there. We only live 1 hour 20 minutes away with no traffic so with traffic it doubles the time. Thankfully we are safe and Luke only screamed at the appointments and the last part of the way home. I think if he screamed the entire 3 hours of driving my stress level would have been worse. Nope  he slept most of the drive. Driving to Puyallup and Tacoma is nothing like driving to Seattle. I recently looked at the mileage to Poulsbo where he used to have PT, OT and ST and Tacoma is actually a few miles closer. I should sleep my family has been sleeping for over 2 hours now. Luke woke up a lot last night too.

Wednesday, November 5, 2014


I should be doing the dishes since everyone except me is sleeping and it 's only 8pm. I considered deleting my blog today too, all of it from day one. Some day I may want to look back on it and see how far Abe and my family have come. It might help or inspire other people, it may give someone with a child in a similar situation a ray or hope or it might just flat out offend people. It's from my heart and what is currently happening in my family. What is occupying my heart, mind and soul at the time. I decided it's probably not the best idea to completely delete. I felt compelled tonight to write this entry about doors.  Abe has had his power wheelchair since summer time. We have had a few set backs with it especially during his inpatient stay. ABA worked tremendously hard to motivate him to drive it. The title of this entry is "Doors". The reason behind it is Abe has a huge aversion towards driving his chair thru doorways. He often verbally says "I need help", "help me". This is fine when there is an  automatic door that is wheelchair accessible that I can quickly press a button and it opens back up. However at his school we have to maneuver through two door ways. The external door way has two doors but is separated by a metal divider and the internal doors both can open. Luke is now one years old and I often put him in a Tula baby carrier I borrowed on my back so I can use both arms and legs to hold the doors open. I can't be chasing a busy toddler and help a 5 year old that does not feel comfortable driving his wheelchair thru door ways or onto or off elevators. The Tula or Ergo baby are truly necessary for me right now and I am so thankful to have the option. I heard on Spirit105.3 last week about a high school senior with cerebral palsy doing funding raising so his school would automatic doors for children in wheelchairs.  I really don't want to copy his idea but I thought wow how awesome would it be for all the children in wheelchairs that attend Abe's school for an automatic door to be put in.  The senior in high school had people donate $20.00 for a ride on  his wheelchair. He raised enough money for it be purchased but will graduate before it is installed. Abe is only in kindergarten right now so if this does happen then he will benefit. If you have seen me struggle to hold the doors open and help Abe drive his chair into school while trying to make sure I don't hit Luke into the other side of the door you would completely understand this request. Some times someone is available to help us but most of the time there is no one because we typically arrive during the school day. Eventually he will gain the confidence and maturity to drive himself thru doorways but when he does sadly he will still require someone else to hold the door open for him since they are not handicap accessible. This will make him still dependent on other people as well as all the other children in wheelchairs. I mentioned the idea of automatic doors to assistant director of special education but all that was probably was heard is "this cost too much money, this cost too much money". I assume that's all that went to his mind, I really have no idea. The topic was quickly switched. Most likely true because these doors probably require maintenance beyond a typical door. Also during a lock down could it be properly locked to prevent a bad person from entering the school? I have no idea if we did the fundraising if the school would even consider it. It's probably been needed for several years but sometimes it takes a loud parent to make things happen.  I am open to ideas and suggestions about this. Especially from parents that made the playground in Bremerton get remodeled so their children can play. Who do I approach, what research do I need to do, do I find out prices and vendors? Should I approach the PTA about this? I should have someone take a video of what's involved with getting Abe thru the door ways just to get into school. The door that he goes in to and from the bus is locked during the day which is understandable. It still is not that easy to use that door way with the power wheelchair. On a different note Abe used a reserve walker today and yesterday at outpatient PT and did an amazing job. He is making good progress. We just need to keep his tummy issues under control and keep him healthy.