Vote! For Who? Well….

In my house there are six adults. However only three of them are able to vote. Why? When John, Mark, and Noah each turned 18, we went before a judge and had them declared incompetent in order to protect all of you. That means that they are unable to vote simply because they do not understand the process, nor could they pick a person to vote for based on their own understanding of what the candidate would do or policies they would adopt. Basically, if we had not done this, then at every election I would be able to vote four times for the candidate that I want. And, moving forward, when I was no longer with them, somebody else would be able to do this. As a result of Aran and I making this decision to protect all of you, your vote becomes that much more important.

Noah, John, and Mark

If my boys could vote, these are the questions I think they would ask the candidates:

How will you protect parents’ mental health when they have to make tough choices in helping their baby/child/adult with developmental/physical/emotional disabilities?

How will you ensure that all children will receive the healthcare they need regardless of parent income or pre-existing condition?

How will you ensure that all parents are able to provide three meals a day for their children, themselves, and anyone under their care?

How will you change the system to include more case workers, social workers, and mental health workers for parents and the children in crisis?

How will you support schools to ensure that they can provide the necessary occupational, physical, speech, and emotional therapies needed, which includes keeping caseloads and class sizes at a smaller number?

How will you increase support for employees working in different kinds of group homes and assisted living facilities, which includes better wages, more training, mental and physical health support?

How will you increase funding to private, local, and state businesses so that they can be safe and welcoming to all people of different abilities?

How will you increase the awareness of doctors, teachers, businesses, and the whole community on the importance of looking at every person’s abilities?

What will you do to help society understand that the label “less productive” is not only demeaning but unmeasurable in order to ensure that things like heart and other organ transplants are no longer based on the cognitive abilities of the recipient?

What will you do to ensure that every person has the ability to obtain a safe place to live and clean water to drink?

Have you ever been to a group home, sheltered workshop, community based residential facility, assisted living facility, or day center for adults with disabilities?

Have you ever attended or supported Special Olympics?

Would you be willing to spend a day at a group home, parent’s home, day center, classroom, or business working with adults with disabilities?

Would you be willing to spend time sitting with parents and adults with disabilities as they tell you their fears and dreams?

Will you consider funding marijuana-based medications that are proven to help, requiring state funded insurance to pay for any medication a doctor prescribes?

Noah, Mark, and John

These are the situations that we have struggled with and continue to struggle with in trying to give our boys the best life possible. I can’t, shouldn’t, and won’t tell you who to vote for. That is a right and privilege that many don’t have. If you can’t decide who would be better for you then think of others who can’t vote and look at the platforms that will give others the quality of life we all deserve.

So please, vote.

Blessings!

Grief, Fear, Jealousy, Hope

This time of year tends to bring on a period of grieving for me. Watching kids go back to school, college, or starting a new job can cause me to struggle. It’s not as if my boys aren’t doing the same but rather, they don’t get the chance to make the decision of what is next. Aran and I make those decisions for them. We can ask Noah and John if they want a job that is offered to them but the response from John is typically, “I don’t know” while Noah will simply say, “Yes” just to please us. With Marky there just aren’t any good options for him currently in this area. What has been interesting for me is how my grieving has never really stopped since they were all diagnosed.

John, age 3

When John was diagnosed with Down Syndrome at 2 hours old, I had an idea of what to expect. But what I didn’t expect was how little others thought he would do. He was 2 hours old and the doctors were telling me what he wouldn’t do at the age of 5. I mean, I sure wish I could tell the future like that! (please note the sarcasm in that previous sentence). I understand that many doctors feel that they must always tell the patients the worst-case scenario, but I wish we as a society would look at a person’s value rather than what the “cost” is to others.

I think this annual grief comes down to my children not doing what society expects of them at a certain age. However, without these expectations, we would not have the diagnoses that give us a chance to help our children. It’s a double-edged sword. We need to know what milestones our children should be hitting but the pain of watching them miss them, or go backwards, can be devastating. While we are of course happy for other children, we cry in pain for our own.

Right now, I am also entering a new kind of grief for myself. Our wonderful boys cannot be left alone. At 21, 21, and 23 years of age, I still need to find a “sitter” or make sure Aran is home for them in order for me to leave the house. I can’t quickly grab something from the grocery store or spontaneously get lunch with a friend. In fact, if I need to use the bathroom and am the only one home with the boys, I lock the front door (with a Marky proof lock), make sure Mark is in a safe place, and then quickly use the bathroom, hoping I can finish before anyone (usually Mark) gets into trouble. At this point in my life I should be past this. In writing this I just realized that is more about the fact that I have to plan everything out. There is nothing spontaneous in my life as everything revolves around my boys: when I shower, wake up, go to sleep, write my blog, read a book… the list goes on. Perhaps I’m not grieving right now, rather, I am jealous of others’ “freedom”.

Some of you have asked me what is it that I find most important? My answer is, “My children’s safety and happiness”. Are my children safe right now? Yes. Are my children happy in their home right now? Yes. Do I have the ability to hire more help so that I can do more outside of the house? Yes. And once COVID-19 is over, while it may not be spontaneous, I can find time to do some of the things I desire. Do I love being a caretaker of my boys? Absolutely! I can’t imagine doing anything else right now. Will I always “grieve” the what ifs? Yes. But if my children are safe and happy in the here & now, then why would I want anything else for them? My grief for them is based on something they do not realize they are missing: being able to make their own decisions. My fear (not grief) is making the wrong decision for them. My jealousy is that most parents don’t need to make these types of decisions for their adult children.

My hope is that as I move through this next phase in our life, I am able to make decisions that will benefit both my boys and me. I hope that I can find the people and places that will bring us all the safety and happiness we desire. I hope that when I grieve, I am reminded that safety and happiness are the most important things in life. Not every “typical” person follows the same path so it is “normal” that my children will follow their own paths. They will just have a little more guidance from us than others might.

Please know that I appreciate all of you reading this. Thank you to all the people who have encouraged me to write this blog. It has been very therapeutic for me in so many ways. I truly love my role in life right now and while I know that at some point, I will be too old and frail to be the primary caretaker of my boys, for now, I wouldn’t change a thing. I am incredibly Blessed.

Blessings to all of you!!

3 Steps Forward, 5 Steps Back

One of the hardest things about informing you all about our life is having to let you know when things go backwards. Literally the day after I posted the story about Mark and the psych ward and said how well he was doing… things changed. On that Wednesday morning, Marky woke up with half of his face and head rather swollen. I didn’t think it was an allergic reaction but after talking to his primary doctor, we headed for the Emergency Room. The doctor agreed that it didn’t look like an allergy but could possibly a sinus infection or maybe an infected tooth. So, we got some antibiotics and made an appointment with the dentist for that afternoon.

Mark’s speech app on his iPad

The dentist could find no indication that Mark had any kind of infection in or around his mouth. This was good news but also a little confusing. What was causing his face to swell? One of the hardest things for us is trying and figure out what Mark is feeling when he can’t express himself very well. One of the reasons we thought an infection in his mouth was possible is that Marky kept typing “tongue”. When he doesn’t know a word, he will try and type something that is close to what he is trying to say. Sometimes we can figure out what he is saying. Sometimes we can’t. We could find nothing wrong with his mouth so we just had to hope that the swelling would go down and the antibiotics would kick in if there was an infection.

Mark’s Senior Photo (Oshkosh West Class of 2018)

He woke up on Thursday and looked a little bit better. We went about that day as normal as possible and just continued to keep an eye on Mark. By the end of the day it looked like much of the swelling had gone down. We were all greatly relieved and felt that we were on the right track. Mark has never been one to “follow the rules”. In fact, the joke is that Mark is the best at solving problems that really aren’t problems. I can’t tell you how many times we have watched Mark figure out how to escape our house, the yard, or a school after we had already “Marky proofed” it. His mind is amazing and finds ways to satisfy his physical need to move or be in a certain place. Friday morning, we realized that this would be no different.

Mark, 1 year old

Mark woke up with more swelling especially around his left eye. It was bad enough that we went right back to the ER. This time they wanted to do a CT scan on his head to make sure that he didn’t have a severe infection in his eye. I said that was fine but made it clear that Mark would not allow an IV to stay in his arm and if they wanted to do a CT scan it would need to be without contrast. The Physician Assistant heard what I said. The doctor did not. When the nurse came in to start the IV, I just looked at her and explained that it wouldn’t be possible without Propofol. In Mark’s short life we have needed to do enough tests that I know the only medication that works for him is Propofol. This med is so strong that an anesthesiologist is required to be part of the team when using it. I offered to bring Mark back later if they wanted to get a team together to do a contrast CT scan. The PA said we could do a CT scan without contrast. Thank you!

Mark, age 3 1/2

Mark was nervous but they let me stay with him the whole time and he did great. The results showed no infection or skull fractures, but it did show significant bruising on his temple area. I knew what that meant but I convinced myself that it could still be an infection. I didn’t want to admit that Mark had been hitting his head on something in the house without us realizing it. We had always heard him when he would hit a wall or a window. It was almost always on the top or back of his head. This was the side of his head so it couldn’t be him banging his head. I tried to convince myself of this until Aran caught him hitting the side of his head against a board in the basement.

Mark (left) and Noah, age 7

Why? What changed? Why is he doing this again? Marky, do you have a headache? Does your ear hurt? Are you upset about something? Is your head feeling funny like you’re going to have a seizure? Or are you dizzy? What about hitting your head feels good? What can I do to replace this need? How am I going to redo my entire house so that there are zero places you can hit your head? I can give you the helmet to wear but you know how to take it off. I’ve put boards over the holes in the drywall but now you have something harder to hit your head on. We put padding on the walls in your bedroom so that is a pretty safe place, but you can’t stay in there all day. What do we do now?

Mark enjoying some pizza

During these last two weeks we have also seen an incredible increase in Mark’s communication. He is typing things we have never seen and giving us almost complete sentences. It has been amazing! Some of what he is typing are things he has learned throughout the years in books we have read him such as information about the weather or pages out of a Dr. Suess book. We have learned during Mark’s life that when he is making an intellectual “breakthrough” he tends to struggle with some outward behavior. In the past it has been yelling, spitting, putting holes in the walls, or being self-abusive. I honestly prefer the first three over the last one, but we don’t get to choose and just need to help him work through it. This is where we are right now.

Mark at his 10th birthday party

We encourage him to keep trying and communicating what his needs are while also trying to find ways to keep him from hitting his head on different things in the house. The amazing thing is one of the phrases he has been typing is “great job proud”. This made me cry and I realized that he understands way more than what we give him credit for. This is not a concrete concept. He is expressing is a feeling. Another one we have seen is “crying ok” which we also encourage and sometimes he will just sit and cry. As hard as it is to watch, it is also amazing that he understands and can cry when he needs too. I cannot imagine being trapped in his body and brain. I find myself exhausted trying to help and encourage him. But I am also in awe that he can be so happy most of the time with the simplest of things.

Mark, doing the typical teenager nap at age 15

We continue to have hope that this is just another bump in the road. This bump could end up producing a huge jump in his communication skills which will continue to increase his quality of life. We are on one huge roller coaster and some days I want off in the worst way. However, I can’t imagine how boring my life would be without these twists and turns. So please pray that we continue to see the increased communication but a decrease in the head banging. I know we will be taking more steps forward in the near future!

Blessings!

Who Is The Expert?

John, age 5, with Big Bird and T-I-Double Guh-ER

I am not an expert in Autism, Down Syndrome, Speech, Medicine, or any other label that you can come up with. At different points in the boy’s life we would meet with the “expert” of a label or health issue to try and decide what could be done to help them. Many of these people were very nice. However, a few made me feel like I was nothing and I should be quiet and just listen to their wisdom. I would usually walk away from those experiences either confused or feeling like I was the worst parent because I wasn’t doing what the “expert” claimed was crucial. It took me years to realize that I am, in fact, an expert. I am an expert in John, Mark, and Noah. I also realized that this kind of expertise was important to ensure that any kind of medical or educational therapy was successful. Convincing others of this was a little difficult on more than one occasion.

HUG ME!

Most of you know our son John as a the fun-loving, sports crazed, and best hugger in the world that he is. When John started school, he attended a classroom that had amazing teachers and classmates. However, none of the students could talk and John was not expanding his vocabulary. When he was set to start 2nd grade, they were talking about John switching schools and being a part of a classroom that was also mostly non-verbal. I felt that John would do better in a classroom with typical peers who would talk to him or at least each other so John would then start copying their speech. The teachers had a valid concern that the content of the classes would be above John’s academic ability. They were right, but my hope was that John would be listening to the words and start trying to talk to his peers around him.

John, age 8

John had never been in a regular classroom so there was some concern that he would be able to sit through a class. I agreed so in the end we decided to try him in a regular classroom for 50% of the day and a special education classroom for the other 50%. I also suggested we try this arrangement for six weeks and at the end of that time if it proved too much for John then we would go back to an all special education classroom. After just two weeks everyone agreed that John was doing great and he should remain where he was. At this point I began to understand better that the “experts” may understand the diagnosis but I was the “expert” on John.

Aran and John on X-Flight at Six Flags Great America

This switch in my thoughts became even more important as John got older and needed different minor medical procedures. John hates the dentist! Because he was born with a bilateral cleft lip and palate, he required several mouth surgeries before he was five. We had to hold him down to get the IV in and then wait for the meds to kick in. We tried Valium and Versed but he was able to fight through the calming effects. His fear was greater than any of these medications. He became the same way with blood draws and by the age of 7 we were really struggling with how to do things like teeth cleaning, blood draws, ears checked, and even ultrasounds of his heart. We just couldn’t hold him down anymore. It was so traumatic for all of us and I knew it would only get harder as he got bigger and stronger.

John at a doctor appointment

I finally asked that we try something a little “stronger” than the previous meds and we were offered Ketamine. I know this is a powerful medication but it works well for John. We also started coordinating the medical procedures to happen at the same time. If John needed to have tubes put in his ears then I would also call the dentist to see if he could at the same time clean John’s teeth. I would also call his primary doctor and have them order a blood draw while John was out. Then an ultrasound was ordered for John’s heart so again I called everyone on his team so we could coordinate what else was needed. Sure, this required a little extra work for me but the relationships I built with his core team was amazing. They made it much easier.

One of John’s 270,136 selfies

The interesting part was when we would get a nurse or anesthesiologist who has never worked with us before. I would try and explain that we would need Ketamine first and then once he was asleep they could start the IV. Generally, this was done without much questioning, however what I would say next generally go me the, “OK you are overprotective” look. I would let them know that John comes out anesthesia rather quickly and he comes out very angry. It is critical that they remove the IV before he completely wakes up. Yes, I know that the IV is important and is typically left in so that if they need to administer fluids or other meds it can be done quickly. John doesn’t care. John doesn’t even like band-aids. If he sees anything on his arm he will do everything he can to rip it off. And the medical staff would quickly learn that I knew what I was talking about.

John Walter, Oshkosh West Class of 2016 (photo credit Lexi Piercë)

I have learned to ask that things be written in John’s chart so the next person not only hears me say it but also can read it. In school, I had to agree that John would get less learning time at his level by being with his peers. I agreed and explained that I wanted John to learn the social cues, language, and be held to the same behaviors as his peers. For John this worked very well. His communication skills grew rapidly, his comfort level around others increased, and his overall confidence in himself was wonderful to see. I now look at the information that any “expert” gives me and I try and figure out if this could help John or if it just doesn’t fit his situation. Labels are necessary and the study of these labels is critical. However, it is important to remember that John is more than a label and he definitely dances to his own beat 🙂

Blessings!

Mark And The Psych Ward

Dad, Molly, Me, and Grandpa

Mental Health has become an open topic of discussion in the last few years. However, I remember a time when that wasn’t so. During my childhood, my grandfather on my dad’s side went into the hospital for a few days because he was sick with “pneumonia”. I was only 7 years old so of course I didn’t question what I was being told and believed what the adults said. When I was 14 my grandfather again went to the hospital for “pneumonia”. But this time my parents felt I should know the truth. My grandfather was receiving shock treatments for severe depression. My grandmother was so ashamed that he needed help that she called it “pneumonia” instead. This happened 5 times and it was every 7 years that his meds seemed to stop working and he needed the shock therapy instead. I know this was, and is, a controversial therapy. But it worked for him and he passed away a happy man at 94. Please don’t judge him or my grandmother for this decision…… because that is what she was so afraid of: Judgement by those who did not understand the situation.

Mark and Me

In January of 2017, we hit a crossroad with Mark. He was becoming more and more self-abusive and had started lashing out towards others if they got too close during one of his “self-expression” episodes. We started to fear not only for Mark’s safety but also for the safety of our other children. We could not figure out the trigger for these episodes and we finally admitted he/we needed help to figure it out. We made the heartbreaking decision to put Mark in a Psychiatric Ward. Mark had just turned 18 and we had already been granted guardianship so it was just a matter of finding one that had room for him. The first location our doctor called was completely full and they suggested a place that dealt with autism. Our doctor called that one but but discovered that because of Mark’s age, he wasn’t eligible for the pediatric wing. But when asked about the adult wing they said he needed to be 21.

Wait. What????

At this point both Aran and I had taken turns reading to Mark while the other one went and cried. The feeling was awful.

We decided to try one more place. However, we found out that he would need to picked up by the cops and taken in through the ER to be placed there. Also, he would not be allowed to have his iPad because it could be used as a weapon. I do understand that last point but it is his primary form of communication! At this point, and at the recommendation of our primary doctor, we stopped looking for a place and instead called a psychiatrist/neurologist who practiced only 30 minutes from our house. He had a cancellation for the next morning. Thank you Jesus! We just needed to keep Mark calm for the next 24 hours and pray that this doctor could help. During the days leading up to the decision to have Mark committed I felt so much guilt. What could I have done differently? Why can’t I figure out the triggers? How do I explain that I won’t be abandoning him? How will they understand him? Is this really the only thing we can do? Will we ever get him back….. This is the question that haunted me. It still haunts me today.

We saw the psychiatrist/neurologist the very next day and within minutes he determined Mark was likely having migraines and possibly little seizures so he started him on some pretty heavy meds. In the first couple days Mark slept a lot, which he really needed, as did we. This doctor gave us hope. No promises, just hope. Hope that we could give Mark relief from the headaches and seizures. Hope that we could keep him home. Hope that we could figure out what Mark needed both physically and mentally to have a good quality of life. It has been 3 ½ years since that day and I can finally say we have found a combination of meds that is working. As I write this Mark is sleeping better, no longer self-abusive, communicating at a deeper level, and most of all happy. His quality of life is, in my opinion, the best it has ever been.

Mark and his grin

If you spend any time with Mark, you will notice both of his cauliflower ears. You’ll likely see that his clothes are on inside out and/or backwards. Plus, you’ll hear that he never plays a song all the way through on his iPad. But you will also see the smile on his face, that mischievous grin that makes you smile and a little nervous at the same time. Mental health is so important. While Mark was struggling, we all struggled. Many times, I felt like I was choosing Mark over my other children. The guilt was awful. Whose needs are most important? When do I admit that I can’t do this? Can I admit that? What will my friends think when they find out? Will they think I abandoned him? Will they think I am an awful parent/person? Do I follow my grandmother’s lead and just say he is at a “camp” for a little while so I don’t have to deal with the questions or the shame….. That is the real problem. Shame. I was ashamed that I couldn’t handle things and needed help. I grew up believing that asking for help meant I was weak. I should be able to do everything for myself. Not anymore. We need each other. We need to be OK with mental health issues. We need to understand that it is no different than having diabetes, the flu, or the chicken pox. If we don’t really start paying attention to cries for help, we will lose more people to shame. I had created stories in my head of what people would think. I now understand why people don’t talk about getting help and yet it was the help that brought hope back into our lives. May you ask for and find the help you need to have the hope in this chaos we call life.

Blessings!

Un-Masking My Intentions

Well 2020 has been quite the year so far! Our family was sick with the stomach flu in parts of January and February so we were pretty excited when March started. Then…. COVID-19 came along. We had Noah and John take a leave of absence from their jobs hoping they could go back in late April or May. Their bosses were wonderful and had no problem accommodating our request. We also stopped going to the grocery store or any store for that matter to limit our exposure. Noah and I started working on making masks and we tried to design different kinds in the hope that all the boys would wear one. (We are still working on finding something they will wear for more than just a few seconds.) We stopped having therapists come and help us which meant that Aran and Molly took over that role.

The one thing that we were able to keep constant was going to “The Workshop”. We purchased a house last October to give Mark a chance to “go to work” Monday–Friday like his brothers John and Noah. Since The Workshop is ours we did not need to worry about outside exposure so we were able to keep much of the boys’ routine the same which has helped us tremendously. By mid-April it became clear that it could be months before it was safe for Noah and John to go back to work so we had them resign from their jobs in good standing. This allows them to reapply for their jobs when we feel it is safe to go back to work. In the meantime, those positions are filled by others who need employment. If their jobs are no longer available we can just look for something else. At the recommendation of our physicians, the boys won’t go back to work until spring of 2021… at the earliest.

Our need to be extra careful lies in the boys all having underlying conditions that could make their recovery from COVID-19 difficult. However, an even bigger concern is that John and Mark would seriously struggle if they needed to be hospitalized. Neither of them will keep an IV in for any amount of time. In fact, for John to even get a blood draw he must first have a shot of Ketamine to knock him out. I am also very concerned that they could be non-symptomatic and pass COVID on to others because they do not understand how to prevent the spread. I mean, seriously, try telling John he can’t run up to someone and give them a hug! So, until we can get them to wear some kind of mask or face shield, they will not be able to go anywhere that people are… especially if others aren’t willing to wear a mask.

I must admit that I am struggling with people not wearing a mask in places like a store. I understand they are uncomfortable and annoying but the science is clear: they protect others. So, why not wear one just for the time you are in a store? For the last 23 years our family has done everything possible to teach our boys how to “fit” into society. We did this so that no one would feel uncomfortable while the boys are out in public. During times in their life when they struggled, we kept the boys away from stores so we didn’t disturb anybody while they shopped. To be honest, I also got sick of the dirty looks if my boys did something that was deemed “wrong” in public. And now, in 2020? Society could really help my boys by wearing a mask, but apparently that’s too hard because it is different than what society wants to do. As a result of this, I don’t think I need to worry anymore.

Once COVID-19 has subsided, I will be taking my boys to the store – a lot. And if they summersault down the aisle, please feel free to sidestep out of the way. If they scream at the top of their lungs, please just plug your ears and keep on shopping. If one of them drops to their knees or repeatedly hits themselves until they bleed, please don’t give me a harsh look. Feel free to keep shopping. If one of them suddenly pulls down their pants to fix their undies or adjust something, please don’t worry because you won’t see anything you don’t want to. Since they struggle with personal space, if one runs into you please don’t expect them to verbally apologize. They can’t talk like you do. If they get “stuck” in the middle of the aisle and you can’t get around them, please simply turn around and smile. We all know this is not how most of society would react. For many years adults with disabilities were not even taken into public places. Society has very little tolerance for anything different from their “norm”. This needs to change.

Photo from July 30, 2019 on Aran’s instagram

Right now, I am choosing to protect you from the possibility that my boys could pass COVID-19 on to you. They struggle to tell us when they are sick so unless they have a fever we may not know they are sick. For that reason, I will also wear a mask in public. However, when this pandemic is over and we can all go back to our “normal” lives, please know that you will be seeing more of my boys in different places. I will always make sure they are safe but I am no longer going to worry about your “comfort level” around them. So, if you are in the grocery store and hear a loud yell from aisle 13, come say hello! We would love to see you.

Blessings!

Special Education Matters (yes, I’m going there)

I have attended over 100 IEP’s for my boys in the 20+ years they attended school. Before each Individualized Education Program meeting, I would prepare a list of concerns to go over with their teachers. Some of the concerns were pretty simple. For example, one of the boys was coming home with most of his lunch uneaten so we were able to extend his lunch time to ensure he could eat. Other times we simply had to figure out the best way to explain to the boys why they needed to do a certain task. We quickly realized that the phrase, “If you do ______ then you can ______” worked well but only if the reward was immediate. Saying they would get something in an hour was too hard of a concept. At times my requests were a little more difficult to achieve in the teacher’s eyes but I would try to explain that if the regular education students could try, then why not my special education student.

John, Noah, and Mark

During one of these meetings I was informed that my son Noah would not be attending the same middle school as his current elementary student friends. When I asked why, they replied that there wasn’t a program at the school that he could be a part of. Noah was in a school that had co-teaching. This means the regular education and special education where in the same room together for most of the day. The teachers would take turns teaching the subject while the other would assist students who needed help. This meant that a student would hear the same information but in two different styles. As a result, the curriculum was never “watered down”, but rather, presented in ways that all levels could understand. Noah started in this school in 1st grade and built relationships with the kids in his class. They understood that Noah would occasionally make noises during class and but by 5th grade, no one even looked up. His friends knew that Noah only talked with his iPad and used a few simple signs which they all knew. They didn’t get nervous when Noah would follow a little close while staring at someone’s feet. Noah’s peers understood him and accepted him just the way he was. Why? They grew up with him. And now the district wanted Noah to start that process all over in a new school starting at 6th grade.

“Um…..that’s not going to work for us.”

Noah

The teachers explained that this was not in their control so I would need to work with the district to make any changes. First, I decided it would be better if I wasn’t the only parent going to the district with my concerns. I called a few other parents who also had children with special needs and we got together and decided we needed a support group. So, we all called more parents and started having monthly meetings to talk about our concerns for our children. We then started attending school board meetings, PTA meetings, and asking different administrators to attend our meetings in order to explain our concerns.

Our biggest concern? That all of our children were shipped to whatever school had a “program” available which meant losing friends. Our children had the hardest time making friends and now you want them to have to start over every few years? To top it off, it could also mean an hour or more bus ride for them in the morning and night if a parent couldn’t provide transportation. At one point, Noah was in the school farthest from our home and if we hadn’t been able to take him to and from school, he would have been on the bus for 1 hour and 20 minutes each way. Talk about setting up someone for failure even before school starts!

We worked hard for almost a year before enough of the administration agreed that it was important that the students stay with their regular education peers. The district agreed to look at each child’s needs before deciding which school they would attend. We won. Our children would be able to attend school just like a regular student would.

But here’s the thing…. Not once when I went to these meetings for the boys did I ever talk about or fight for the rights of regular education students. I didn’t have to because they were already receiving the benefits that my children were not. I was there to talk about Special Education Students – students who were deemed incapable of keeping up in academics or unable to regulate their emotions or had a label that kept them apart from the rest of the students. During these meetings with other parents, board members, or administration, the only time regular students came up was if they thought the special education students might interfere with their learning. As in, they didn’t want the regular education students to get “less teaching” because the special education students were in the room.

Yes, all students matter. But the regular education students weren’t being denied something. We didn’t need to go in and defend them. We wanted our children to be given the same opportunities as the other children. We knew they were different but a label does not define them! It only describes one characteristic of many. We wanted the school to allow our children the same opportunities as everyone else. These children have no control over their disabilities so why are they being punished for them?

So, when someone says “Black Lives Matter” we really ought to listen. They aren’t saying someone’s else’s life doesn’t matter. They are asking us to listen to how they are being treated based on something out of their control. I never once feared my children would die while in care of the teachers. I can’t imagine having that fear. Please know I am listening.

Blessings!

Unless…..

The Walter House’s Very Own “Lorax Garden”

“Unless someone like you cares a whole awful lot, nothing is going to get better. It’s not.” The Lorax by Dr. Seuss

When I share stories about my family, my goal has been to talk about the good and the bad. However, I have chosen to not share the ugly. Why, you ask? I hate conflict. I didn’t want to offend everybody. I didn’t want to be judged for the choices I make. I wanted to protect my children’s dignity. I didn’t want to seem like I wasn’t grateful for my children. I didn’t want to have to explain my choices. I didn’t want you to see how much I was struggling. Well, I have changed my mind.

Unless I am willing to share what my children experience, it will be difficult to understand why things need to change. Unless I am willing to educate others of my experiences, it will be difficult for others to understand why things need to change. Unless we ask and answer questions, it will be difficult to learn what needs to change. Unless we are willing to truly listen, nothing will change. I want to be a part of that change… not only for my children but for the next generation of amazing people.

I look forward to sharing the good, the bad, AND the ugly very soon. Blessings!

Thirteen Point One…

13.1  What Does That Really Mean?

On Saturday September 26^th, 2015 I walked in the Bellin Women’s Half-Marathon. When I decided that I wanted to do this it was May and I was needing something to focus on after losing my Dad. I had done a 10k so I knew I needed something “harder” that I would truly need to train for and the half marathon seemed the logical choice. I am not a runner so I looked for something that I hoped none of my friends would be in attendance. Well, actually I did call Lindsey who had done the 10k with me and asked if she was interested in doing it as well so I would have someone to hold me accountable to the training. This walk needed to be just for me. I needed to walk for me, have time for me, grieve, and allow myself to take care of me.

While the training was difficult at times it also felt very good to get out and push myself. I grew up riding horses and taking care of them on a daily basis so I had been fit and strong. However, I was born without a full socket in my right hip and spent the first year of my life in either braces or a full body cast. Growing up this meant that I couldn’t do the splits and my hip would pop out once in a while. But it never stopped me from trying things. After having my amazing children my hip became more painful and at the age of 35 I was diagnosed with Fibromyalgia. While these things did slow me down they couldn’t stop me since my children . . . well let’s just say they are very active and I had to keep up! In the last two years my body has started to rebel a little more and I realized that I need to start focusing on getting my strength back or the doctors warned me I would need a hip replacement before I turned 50. I had tried to do workouts at my home but someone always needed help and I never had a good goal to work towards. Then 3 years ago my dad was officially diagnosed with Lewy Body Dementia and I decided that every free moment I had would be spent with him.

I do not regret the extra time sitting in the car or sitting next to him that I did during that time. I am so grateful for the conversations we were able to have and the comfort we were able to give each other. This did though make my hip act up more and my “bad Fibro” days increased which caused me to sit more which didn’t help anything. So after my dad passed I needed something new to focus on and decided it should be me. So I set a goal and started to walk. I really thought I was prepared for this long walk and had done 11 miles the Saturday before in just over 3 hours. I was ready. Holy Cow was I not ready for what this walk would do for me.

The first 4 miles went as I expected and I felt good however at mile 5 things changed for me. I was alone on the course. At least, I felt alone as there were three people way behind me and the other 1996 where far enough ahead of me that I could no longer see them as the course took some turns. I was close to tears realizing that I was by myself when a medic on a bike came by and checked on me, then a van with volunteers drove by, and a little farther up was a water station with a dozen people cheering me on. I was never alone. I just didn’t see those watching over me. By mile 8 the women behind me had dropped out of the race so I really was the last one. Now I had a mini-van 15 feet behind me and I started to laugh as I thought of Dory in Finding Nemo freaking out when she forgot she was being followed. I considered that I could start weaving but I was afraid I might trip and wouldn’t be able to get up.

By mile 9 I started to pray. The pain had really started to get bad in my hips and I was afraid that I wasn’t going to make it so I decided to start “shedding” some of the weight of my shoulders. First I asked my dad to forgive me for anything I didn’t do but could have done to make his life better. I forgave those who created the agent orange that made him sick and the government for not taking care of him after the diagnosis. I thanked my dad for being the kind of father that I needed in always being honest and blunt with me about how he felt about decisions I made and yet supporting me even it wasn’t the best one. I thanked him for truly helping me to understand unconditional love and being an amazing grandfather to my babies. I told him how proud I was to be his daughter and hoped that I would make him proud. I then did the same thing with each of my children and family members. By mile 11 I was feeling lighter and that I may actually finish and yet I knew that if I didn’t, I had still won.

This 13.1 miles had nothing to do with how long it took or how I looked walking or who was cheering me on. This was about God helping me to release some things that I was holding on to that He wanted me to give to Him. There was no one for me to talk to and I had chosen to not bring my earbuds so it was just me and God walking. Yet He also showed that there are always people along the way who are willing to help if I am willing to accept it. I was so grateful for every water/Gatorade station and the people who had volunteered their time and then had to wait for me, the last one, to get there.

At the 12.5 mile mark I caught up to the Ambulance that was in front of me and there was a women on the ground trying to stretch her calves and decide if she could finish. I looked at her and asked if she wanted to walk with me and finish. We started to walk and she said she had also decided to do this alone and had never made it this far before. In fact, she had broken her back years ago and the fact that she could walk was a miracle in itself. We talked about nothing and distracted each other from the physical pain we were feeling as we approached the finish line. We made sure to cross together. Then we hugged and cried. Lindsey was waiting for me at the finish line, she had been there for 1 ½ hours since she had run the course, with a smile and a hug. I got my water bottle and my medallion but I mentally, emotionally, physically, and spiritually received so much more than I could have imagined in walking 13.1 miles.

Blessings!

Always an Adventure

Well on January 4, 2015 we started a new adventure with Marky. He had his first ever seizure and God willing his last. This is something that we had been told could happen simply because Autism is a neurological disorder and some kids have a seizure disorder along with it. When Mark was two he had an EEG that came back normal and we have never seen anything that would indicate possible issues so while this was a surprise it also was not.

In the 4 hours we spent in the ER Mark was run through some basic tests. The first was a blood draw to check many different things and they put an IV in. This was our first experience with Mark and an IV which made me nervous considering he won’t leave a band-aid on for more than five minutes. He watched them put the IV in and seemed to understand the importance of it since 12 hours later as I write this it is still in. All of these initial labs came back as normal and the rest should be back in the next 48 hours.

Next was a CT scan which I truly thought would not go well unless he was sedated. However Mark did amazingly well and even stayed still long enough that they only had to do the scan once. This test also came back completely normal which ruled out things like a tumor or brain bleed. The final test of the night was a lumbar puncture which can be a little more difficult and yet Mark did great. I am sure the amount of sedation drugs helped but either way I could not be prouder of him. The initial test on the spinal fluid came back normal and the rest will be back in 48 hours but I do believe that will be normal as well.

Oh and the best part was that they wanted to give him oxygen through a nasal thingy because of the amount of sedation and while Mark tolerated it he also decided to try and “blow” it out which means he had to blow his nose! We have been working on this skill forever and now he understands! He can blow his nose which is so exciting!!

After all of that he finally fell into a deep sleep. Our pediatrician was with us the entire time at the hospital and decided to admit Mark for the night just to be on the safe side. I did not argue and Mark slept peacefully until 4am which means he got 7 straight hours which is really good for him. It is now 5am and we are watching Aladdin while I type. Mark has continued to stay in bed which tells me he is not 100% but I do think he is feeling better which I am grateful for. He is the only child on the pediatric ward which has also been nice since we have our own nurse and it is very quiet. We should be out of here sometime this morning.

So what happens next? Since Mark is unable to really tell us how he feels we will be doing more testing just to be sure nothing else is going on. The neurologist that was consulted last night felt that since the duration of the seizure was short (less than a minute) and he did not have another one within two hours after the first this may be nothing. Some people have one seizure and never have another which we are praying is the case with Mark. For now his only real restriction will be that he can’t swim for the next six months.

Thank you all for your prayers and support. We ask that you continue to pray that this was a one-time thing or that they are able to find the cause so we can keep it from happening again. We feel so blessed to have Mark as our child and every day I am amazed by his patience and willingness to keep trying to express himself. May your life be as Blessed as ours is. Blessings!

UPDATE: Mark is home! We were discharged around 8:30 am this morning. Mark has had some breakfast (tortellini), and is happily ripping paper while his favorite movie, “The Lion King” is playing not far away.  We are thankful! Blessings!