Thursday, September 21, 2017

Parson Dean - Part 3

You can find part 1 here and part 2 here.

P on the first day of first grade!

We finished up our meeting at the school with encouragement from the principal and Parsons teacher. On the way home we called the pediatricians office and let them know that we'd be dropping off the evaluation for her to review. They said give her a couple weeks to read it over and come to her own conclusions from the evaluation.

I sent an email that evening to the contact Jackie gave us. She replied quickly. Told me a little about her story, her children, and her experience with services inside the private and public school systems. We were talking diagnosis, IEP's, 504's, neurology, behavioral pediatricians, therapists, and anything else that can go along with helping kiddos like ours. Even though our children's struggles were not identical, she understood the challenge. She understood that this long waiting period full of tests and failed attempts is constant and exhausting.

We got a call from our pediatricians office about two weeks later saying our pediatrician was ready to talk with us about the evaluation. I made the appointment and made it clear I was not bringing P with me. I was not and I am still not talking about him in front of him. (P.S He knows I am sharing this journey with the world and is okay with it. Otherwise we would not be sharing publicly.) The appointment was set and I was as prepared as I was ever going to be.

I got to the appointment and she came in, looked at me and said this is an excellent evaluation. I couldn't agree more. HPS did an astounding job with him. A heck of a lot better than the five hour eval from MFB when he was three. She started saying all the same things id heard before. He's very bright, excellent problem solving skills, no impulse control, socially behind, ect.

Her instal response was we need to do blood work. Lets get his blood and see if the same enzyme that is elevated in Wyatt and is causes his muscle myopathy is causing these issues for P. After that we could decide what to do next and if we needed to go someplace else because it was outside her expertise. We did the blood work and the results came back. His enzyme was not elevated. Even though that wouldn't have been great, it would have been a key to the Wyatt puzzle and maybe give us some understanding of whats going on with P.

Sitting in that office, again talking about 504's and his civil rights and what he's entitled too because of them, I know what she's going to suggest next. Trying a medication to help slow his brain down enough to function and process information properly.

Insert here every single soap box people stand on cursing big  pharma and how kids don't need medication they need fresh air and therapy. Check and Check we tried that. Then they say well try oils, and herbs, and supplements, diet change, chiropractic care. Check, check, check and check. Insert comments like, well don't you know how terrible that can be? Don't you know that they can turn into zombies and have rage? Don't you know that it suppress their appetite and can make their blood pressure bottom out? It can cause heart problems and issues sleeping? Why would you want to do this to your child. Why is it always the "quick fix" or the "first thing" people run to? Why are you labeling him, its going to ruin the rest of his life!

Yes, we know all of this. We know because we have tried to avoid this for years and years. Trying to manage it without needing the medical community. We were so accustomed to hearing all of this, I sat in that pediatricians office and tears started to fall. I felt like I failed. Are we just bad parents? This has to be our fault somehow, right? Pedatrician/Parent consoler assured us that that in fact not the case. Reminded us that if P needed special shoes or glasses we would get them for him, in an instant. Why is different. He needs this to function to have any sort of quality of life.

She wrote a prescription for a very lose does of medication for us to fill if and when we were ready. We held onto it for a few days, prayed, talked, went back and forth. We eventually decided to fill the script. We held on to the filled prescription for a few days. We talked with Parson explain to him that we were going to try this and see if it helped his brain slow down enough to be in control of his mind and body. We reluctantly gave him this tiny yellow pill and waited.

I was half way expecting him to grow horns and turn into a zombie. Thats not what happened. He was having actual conversations with us, playing, using his imagination, doing one task for more that 4min at a time. He colored a coloring page. He before this had never ever colored a coloring page. Let alone stayed in the lines. He sat at the table and colored for 20min all the while having wonderful conversations with us and his siblings. He was a different kid. Happy, calm, and content.

The pill was to last four hours before wearing off. The coming down was the other thing everyone warned you about. They would say things like he will be a crazy monster, rage, screaming, out of control. Good thing we were pretty darn used to all that anyhow at this point. The four hours passed and we kept saying "is this it?" Is this the "coming down?" This is nothing we can't handle.

We gave him one dose for a few days and then started giving him the prescribed two per day. One in the morning and one in the afternoon. His appetite didn't diminish, he was sleeping just fine, and he didn't grow horns or turn into a zombie. He was a different kid. Totally himself but in control. Over the next two weeks his quality of life boosted 200%. He could play with his siblings and friends easily. He was not constantly in trouble for being out of control. We went to family gatherings without being filled with fear. Heck we even ate breakfast at a restaurant without a single issue.

We had a two week followup with the pediatrician to evaluate P after being on the med for two weeks. She checked his BMI, heart rate, and blood pressure. She asked him questions about how he felt. Did it make his head hurt or give him a stomach ache? Not one red flag. It was amazing.

The med was working perfectly. Its almost unheard of to find the right med on the first try. We didn't care we were thanking God for these answered prayers.

Now to deal with the issue at hand, school. We continued homeschooling and eventually worked up to Parson going a full day of school once a week, without a issue. It was going so well that it was shocking to his teacher when he had a minor issue like talking to his neighbor during reading time. The kid who wasn't allowed to be in class because he was being to disruptive...was being so good it was a shock when he did anything otherwise.

He got one dose of med in the morning before school and one dose after lunch at school. I was feeling wary of someone else administering a prescription drug to my child. So the pediatrician wrote a script for the long acting version of the pill.

It was awful. All of the terrible things people said could happen as side effects did. He was 100 times worse than he was before. In such a rage we only tried this script for two days before we got the first one back. I couldn't get that prescription bottle to the police department to be destroyed fast enough.

Back on the first prescription things were smooth sailing for the first time in years. Besides hannah breaking her Tibia and her Ulna two weeks apart which was thankfully just a case of clumsiness and bad luck. Things were good, they were "normal".

We still had to address the school issue. Where was P going to go to school for first grade, the 2017/2018 school year? His current school said he was welcome back for first grade full time now that things were managed. My first thought was well, what if we run into issues again? I do not want to repeat this year again.

We began looking at every school in our area. Their curriculum, their services, emailing them to figure out what it would take to get the IEP or 504 if he ended up needing it. We were praying hard for some guidance. I was sitting in a women's conference in February of 2017 and I heard Jo Saxton say "Go to the places that people have forgotten about and are most afraid of." She was talking about how Jesus choose to walk THROUGH Samaria not around it. Through "enemy" territory and loved anyway. Then I felt God nudge me and say you know what i'm saying here. He needs to go to HPS.

HPS gets a terrible rep in our area. I was terrified. I was terrified because it was so big, it wasn't inside my white christian bubble. It was so out of my control. I didn't want to send my child into territory that would be difficult and different than what he was used to. We just got over that, why would I do that intentionally?!

For the next 5 months I prayed, cried, and argued with God about the school he was telling us to send him to. Hearing things from all sorts of people, "Well just pray he gets into the right group of friends, What about the quality? He's going to be exposed to so much so early." It went on and on. Our friends and family were probably sick of us worrying and talking about it. No one understood why this was such a big deal to us. But it was. After everything this was a big decision. It could make or break they smooth sailing that we have spent years trying to accomplish.

May rolled around and I emailed Jackie. Asking what HPS would look like for P.  The process, the curriculum. Asking questions about their ability to give P more advanced curriculum in the places that he needed it and supports in the places he needed it.  Aaron and I made an appointment with the principal of the school he'd be attended for a tour. The principal was so kind. He was willing to show us everything. We met the kindergarten classes the students that would be moving up to first with P. We met the first grade teachers, the school nurse. He answered all our questions and really made us feel like they ran the school for the benefit of the student. He actually cared about those kids and his staff.

We came home with the enrollment packet and we filled it out and turned it in.  We also put P in the lottery for a smaller charter school with a Montessori program. Then I had to make the call to the school he was attending at the moment.

I called the principal and when she answered the tears started to come. I told her we wouldn't be returning to the school the next year. She was expecting that and understood why we chose the way that we did. That was the confirmation. We were letting go of our expectations and dreams for P to attend that school and doing what was best for him instead of what we wanted to be right for him.

We got involved with the schools summer reading programs, getting to know the staff and other families from the school. We saw our beloved Jackie a few times and P was seeming excited. As summer came to an end and I was still hoping from a call from the charter school. The call never came and school was starting in two weeks.

We went to the open house, met Parsons teacher and she was and is a gift. It was clear where Gods hand was in this whole thing. Aaron aunt has been a teacher at HPS for some time. It just so happens that his aunt was Parsons teachers mentor when she first started at HPS. One more sign saying "Ive got him, just trust me." We met the nurse, who isn't an employee of the school. She's an employee of Holland Hospital and she works at the school. Under the same umbrella as our pediatrician so they can communicate to each other directly. What? Thank you Lord! They can communicate about progress and meds and everything else. Plus, she's an RN. I felt so much better about a registered nurse administering Parsons meds than a teacher or office worker doing it. I am sure they would have been competent to do it, but it was just another sign from the Lord saying, calm down, I have him. Don't you see?

The first day of school was here. P was ready. The school already had his meds ready and waiting for him. Nurse knew when he needed them, teacher knew and P knew when he was to go to the office and get is afternoon dose.

I drove him to school and walked him in. We get inside the double doors and there is a line of staff standing there, including Jackie. She greets P with a big welcome and huge hug. Then she looks at me and says no parents beyond this point. What? No. Please let me walk him down I feel like screaming. Nope, no parents beyond this point on the first day. We will take care of him, I promise.

I give P one final hug and walk out. I watch through the windows and he is walking down the hallway. Im back to begging again, please God. We listened, we've done everything, we are trusting that You know what Your doing. I turn around to walk away and my eyes well up again. Y'all..I can't help it I'm just get all weepy.

I look up and there is a women with free coffee standing there. God bless this PTO women and her coffee cart. She looks at me and says "I think you need coffee." We chat and my mind drifts from P who is in a completely new environment, bigger than he's ever been in. Eventually our conversations end and I go home.

I had a peace, a real peace this time about how this year was going to go. I picked up P and his teacher said he did great! She hands me a daily report which she sends home with all her students. Smile face for the afternoon and smile face for the morning. Day one, done.

From day two on P has been riding the bus. He begged and begged to ride the bus, so he does.  Every day he'd get off the bus and tell me he had a fantastic day. All of his daily reports are coming home great. We are finishing up week six of school. Week six of five full days of mainstream school. Not one phone call, not one email, not one sad face. Y'all he is earning prizes for outstanding behavior, kindness and going above and beyond by being helpful.

I took this picture to show the pediatrician earlier this week. Its of all his daily reports. Not one negative comment, not one sad face in sight. I showed this to her this week and her eyes welled up just as mine. Ill say again and again. You need to have a team that cares about your child like you do. Its possible you need to find them. It will change everything.

My fab first is thriving. He's happy. He has friends. He is surrounded by people that are equipped and ready to help him if he ends up needing it. The boy we've known and loved since the day he was born, who we could see through all of the crazy. The good that almost no one else could see was shining brighter than the struggles that he's learning to overcome and control.

I recently read a quote by Corrie Ten Boom and its "Hold everything in your hands lightly, otherwise it hurts when God pries your fingers open" My kids are on loan to me. They belong to someone bigger and who cares about them more than I. Letting my grip loosen a bit has been hard and rewarding. God will use this and has an amazing plan for P. 

These last few years have been a challenge. Finding a team of people that would stand with us, learn with us, fight with us for what P needed. Its hard. Its not hard now, but it will be hard again. There will be med changes and side effects to come. Other struggles as he gets older. For now, we are thankful. We are thankful for HPS and an amazing well his equipped school, filled with teachers and staff that love on those kids like they are there own. We are thankful we fought when we needed to and trusted and listened when we needed to. These last few years have made this last six weeks cause for celebration. 

If  your walking this path now. Gosh, know that we know. We know how hard, how isolating, how exhausting it is. We are here to support you to pray with you. You are not alone and it will get better. 


PS ** This post is not about public vs private schools. This post is about what we needed to do for P.   Please don't use this as a platform to express your opinion on this or on medicating children. There are plenty other opportunities on the internet to do that. Negative or hostile comments will be deleted immediately. 

Wednesday, September 20, 2017

Parson Dean - Part 2

Part one of this journey has already served a larger purpose. Many of you have reached out and said "my child is going through something similar" or "can I please share this with a friend who is on the same journey?" The answer is always yes. Thats the reason I'm writing this all down. So other families, mothers, children know its not just them. They are not in it alone. So please by all means share this journey to whom ever you think would benefit.

If you missed part one of Parsons journey, you can find it here

As I watched the bus drive away on that day September 2016, I was choosing joy and happiness. I was determined that it was going to make a difference and that this year was going to be great. Hannah was about to turn one, I had three days a week to focus on Wyatt and Hannah, and I had almost completed my training program to run a half marathon in a few weeks. It was going to be a great fall.

P got off the bus a little after 3pm that afternoon and said his day was great. He loved school and loved riding the bus. I had thousands of questions that I didn't ask because I knew he wouldn't answer. I didn't get a call from the school that afternoon.  Day two went the same way.

Then there was day three of the 2016/2017 school year. I was standing at the end of our street waiting for the bus to drop P off. My phone rang and I felt my stomach drop and when I saw it was the school. It was his teacher telling me the same things she told me the year before. Asking what I thought we should try this year. We came up with a plan to send him to the hallway to read for a few moments to gather himself and then he could try and return to the classroom.

Fast forward to day ten of the 2016/2017 school year. I again, was waiting at the end of the street for the bus. My phone rang. It was Parsons teacher again saying what  we were doing wasn't working and that it was time to get the principal involved.  Insert the same feelings of fear, anxiety, and wanting to hide under a rock.

I get the appointment made with the principal, Aaron, and his teacher. We talked about Parsons behavior at school, how it was effecting the classroom, and tried to hash out a plan of attack. At this point I really felt like we were all on the same team. What can we do to make this work for everyone. We came up with a similar plan but he would sit in the office and read instead of the hallway. We also were going to try to have the reading intervention teacher sit next to him during class. Not to help with reading, the kid started reading at age 4. She was there to help try and keep hum focused so the teacher didn't have to redirect all the time. Yay, for supervision.

Hannah had a one year well check with our pediatrician. While we were there she asked about P and school. I gave her a quick run down of whats going on. She said it sounds a lot like a 5 year old trying to adjust to school and gave us a wonderful list of things to try.

Ill say quickly this. Your pediatrician is a game changer in situations like this. You need to be able to trust them, trust their judgement. Fortunately, for us this is the case. But if its not the case for you, change. Change doctors until you find someone who is going to help fight for your child.

Armed with my list of things to try from the pediatrician. I hit up Amazon Prime.  I ordered books, a wiggle seat, band for his chair, and a few palm sized quiet fidgets. (Not fidget spinners) I called the school and talked with Parsons teacher about the list of things his pediatrician recommended.

The school didn't allow a few of the things that the pediatrician recommended because they thought it would be too distracting for other students. I get it. It does not mean it wasn't frustrating. The wiggle seat went in the hall with P when he needed to gather himself instead of staying on his desk chair. The fidget was allowed during certain times of the day. These things worked for a week or so.

We were now in the second week of November. I got an email from the principal inviting me to have tea with her. My first thought was crap, this is it. They are going to kick him out of school. So, I created a plan to battle the inevitable conversation to come the next week.

Parsons teacher for K4 and K5 (preschool/kindergarten) is a well experienced and competent teacher. I sat in on his class and was just amazed at how well she connected and taught the kids with so much love and grace. It was apparent that she loved her students. She, with 30+ years of teaching experience had encountered other students with challenges. I don't think that she could have handled this situation any better than she did.

I lined up a sitter for the little kids. My mother in law, who walked a very similar road with Aaron when he was a child. I left for our tea meeting feeling like I was going to vomit the whole way.

I got to the school and was greeted by the principal who was very kind. Our conversation started with her saying "Parson is a wonderful child and we are by no means kicking him out." After that it was one of those moments where everything she said after that sounded like Charlie Browns teacher.

At that moment I didn't know if I was going to throw up, cry, scream or all of it at once. Somehow I managed to get myself together. This was the first moment when I felt like we were the "enemy." I don't think this was the point and this not what she was trying to do, its just what it felt like. She continued saying things like "Teacher is unable to teach the class" and "the other students are suffering." Thankfully I had a pretty good idea that this was coming so I was prepared.

I said to her "We are pulling him out to homeschool him." It was official he was done with traditional kindergarten almost completely. Thats not what the school wanted and its not what I wanted. We figured out a plan where we would follow the schools curriculum at home and Parson would come to school for three hours one day a week.

With that part of the meeting over, the next part started. The principal pulled out a stack of papers and said "These are some things id like you to read over". It was different articles about pedatric anxiety, Tourettes, ADHD, Autism Spectrum Disorder, Sensory Processing Disorder, and Aspergers syndrome. De'javu. This happened two years ago. Someone telling me somethings not right, they don't know what, but he does not fit here. She told me that Holland Public Schools could come in and do an evaluation but that it was a long process. I just needed to submit a written request.

After this meeting I drove home. Mad. The whole way thinking, is there really no place for children like Parson? I know for a fact he is not the only one, surely not the only one in our town. I talked with Aaron about the meeting and we decided to submit the request for the evaluation.

Writing a request for an evaluation is strange. Dear Mr or Mrs so and so, I think something is wrong with my child. I have no idea what but my uneducated guesses are xyz, an so on and so fourth. We finished the letter and sent it.

P at this point was noticing other people noticing. They were playing a game at school before we took him out called "bad student". You'll never guess who was playing the "bad kid", Parson. The teacher ended it as soon as she saw it. But it happened, he knew. We needed to protect him from this.

Everything stopped after this. The running, the training stopped the half marathon never happened.  Everything revolved around homeschooling and surviving. Making sure that Hannah and Wyatts needs were met fully while homeschooling. Learning everything I could about Charlotte Mason and Ambleside curriculum. I was embraced by two sweet friends who were seasoned homeschoolers, letting me borrow books, adding me to Facebook groups, offering prayers and encouragement. This was normal for the next six months.

We heard back pretty quickly from HPS and were assigned a child psychologist named Jackie. Jackie was like our night and shining armor at this point. She and her team held the key, or so we hoped to understanding our sweet boy.

We had our initial meeting with Jackie, the principal, teacher and the reading intervention teacher who sat by P in class for a while. Then there was Aaron and I. We all chatted about what we saw in Parson, his personality, our concerns and the schools concerns. I cried, a ton. Well I shed many many tears in these meetings and many more in the meetings to come. Tears of fear and mostly desperation.

We had the dates set. Over the next 10 weeks P would be evaluated at school. He would be pulled from the classroom, which was no big because he didn't spend much time in there anyhow. He'd be evaluated by Jackie the school psychologist, an occupational therapist, speech therapist, social worker, and later two people from the OAISD. Six therapists were going to evaluate and give us a very good look at the little guy P was.

Outside of this small group of people. Only three or four other people knew that this evaluation was happening. We didn't tell anyone for a very long time. We didn't know what to say, we didn't want to answer all the questions, we didn't want to be a topic of discussion. It was isolating.

It was a long 10 weeks. So many questionnaires to fill out. Some about behavior, some about your relationship with your child, their siblings, and discipline. Evaluations that were like a small books of questions to be filled out by Aaron, Parsons teacher and I. Some for the school psychologist, some for OT, some for the social worker. He had evaluations at school and at the therapists offices.

After the long wait we had our final READ meeting. It was a meeting with all of the therapists, teachers, principal, Aaron and I. It was set to take place the first week of January 2017.

We arrived at the meeting so nervous and hopeful. We thought this is it. This is when we can get him the help he needs to thrive! We went over the almost 30 page evaluation. Each person on the team taking their turn to explain their portion. It was so eyeopening. Mr. Steve, the OT gave us a look at the way Parsons brain works like we'd never heard before. They are telling us exactly what we've seen and known. He's very bright, academically strong, socially week, sensory issues, excellent problem solving, that his brain cannot process information properly. Periodically wiping my eyes through the whole evaluation. Hearing each of them speak so fondly of him, which at this point we are not used to hearing.

We get to the end. Jackie looks at us and says, we have enjoyed Parson so much and we are going to miss seeing him so often. He is a sweet, kind, bright and brought us such joy. The result of the evaluation is that he does NOT qualify for services through Holland Public Schools.

Wait. What? Did you all not just tell us again, that something is not right? That he does fit, that he need help? His brain isn't processing information correctly, that he is struggling? Yes, thats what they said. But yet again, it wasn't enough. It wasn't enough to confirm a written SPD, ASD, Aspergers diagnosis. He's too engaged, he has too much empathy.

We are completely defeated. After all of this. Nothing. Jackie slides me a card with some information on it. She said this is my friend. She's the president of the parent committee for the ISD in your district. She knows you'll  be contacting her. She can help you with next steps. After that all of the therapists are feeling exactly what I'm feeling. They offer hugs, words of encouragement, gave us their phone numbers to call them and ask for help anytime in their off hours.

All the therapists left and it was just Aaron, the school staff and I. We made our way into a small office in the school and we all sat silent for some time. The principal prayed, all of us were emotional. None of us expected this. Whats next? We didn't know. I would take the evaluation to the pediatrician and reach out to Jackie friend to see where we go from here.


Tuesday, September 19, 2017

Parson Dean - Part 1

Its been about a year since I wrote a blog post. Ironically enough this particular post is the beginning of the story about why its been so long. I also really hope it gives hope to parents and children on the same journey.

This same week last year, 2016 Parson was gearing up to start Kindergarten. Three full days of school and bus ridings. It was official...he was a school aged boy.

I guess leading into this story I need to back track a few years. Fall 2016 was not Parsons first school experience. His first school experience was when he was three. That would have been the 2014/2015 school year. He was all registered with a larger private school in our town. We went to orientation and he and we were excited.

He started school and days into the school year the reports started. "Lack of self control", "Below age level", "Loud noises", "Large motor movements at inappropriate times." He was only at school two days a week for a few hours. I would walk into the school to pick him up from his classroom filled with fear. What was the report today? Did he hit someone? Was the teacher able to teach the class? Did he learn anything? Did he spend all his time in the thinking chair? Each day the report was the same. He wasn't handling school well, at all. He did okay some days but  most not.

Im not talking academics. P had no problem with academics, well any besides fine motor skills. He could recognize and name all his letters, numbers, colors, and had a good vocabulary even though he didn't speak clearly. He also had a vast knowledge of school busses. He was always our "emotional" or "dramatic child". At this point Wyatt was just a few months old so, to us, he was just him. We didn't think anything of his behavior except that he was strong willed and loud.

Parent teacher conferences roll along and I meet with his teacher. His teacher who I still to this day appreciate tremendously, looked me in the eyes and said somethings not quite right. She suggested we talk to our Pediatrician about getting him some occupational therapy and speech therapy. I called the pediatrician on the way home from conferences and left a message. She got us a referral and I called and made the appointment. This was fall 2014.

To get appointments like this take time. Lots of time, lots of phone calls and paperwork. Bonus round, health insurance does NOT like paying for anything to do with Occupational therapy, Speech therapy, Sensory Processing Disorder, Autism Spectrum Disorder, Aspergers or anything alone the lines. Not without a written diagnosis and not without a fight.

Anyway. I get the three appointments for Parson made at Mary Free Bed Hospital. A local  well equipped rehabilitation hospital. January of 2015 he will be evaluated for a multitude of things by an Occupational Therapist, Pedatric Psychologist, and Speech Therapist. Wyatt had just turned one and would be spending the 4 plus hours with my Aunt at her in home daycare just a few miles away from the hospital we would be at. Aaron was out of town traveling for work and I was newly pregnant with Hannah.

We did all of the evaluations, hours and hours of them. P was a trooper. The therapists made it lots of fun for him but it was still a lot of work. After everything was done, all of the therapists looked at me and said. "Inconclusive, Too high functioning, Too young to tell, Too much eye contact, No motor planning delay." They agreed something wasn't right, but they didn't know at this moment.

We had the option of continuing evaluations at MFB Hospital at out of pocket costs. Im not talking a few hundred bucks guys, thousands and thousands of dollars to maybe find out what was going on in his three year old self. We decided with the help of his pediatrician that continuing these inconclusive evaluations wasn't the right next step.

The summer of 2015 we tried everything under the sun to help Parson with his sensory needs and to try and minimize his meltdowns. A wrong sock, seam, noise, or change of schedule would throw him into a tail spin. I have so many pictures of him melting down close to as many of him happy. We didn't go to public places. We tried to avoid family gatherings. We left church, small groups all kinds of things early because he couldn't handle it. We didn't eat in a restaurant for years because it was always too much. We tried every supplement that every blog, article, magazine suggested. We cut everything from his diet, sycilytes, artificial dyes, sweeteners, gluten, a lot of dairy. We used essential oils, magnesium baths, vitamins, herbs, exercise, no media at all, some media, and more gross motor exercise. Somethings helped a little and some didn't help at all.

Fast forward to Fall of 2015. Im at this point hugely pregnant with Hannah. P is starting K4 at another small private school. Smaller than the last, but the school Aaron attended for 1st through senior year grade, that I attended for my senior year. We had dreams of our kids going to this school. We couldn't wait for Parson to start. To have the same teachers his Dad and Uncle did. It was nostalgic and so special. This should have been so special. I was terrified. I don't even really know how to put into words the fear that I had going into this year.

A few days into the school year the reports and calls started coming in. I would pick him up, get the news about his day and walk as quickly out of the building as I could. The moment we would get in the car I would silently start to sob. Id text Aaron and say "He hates school. I hate school. Why does this have to be so hard for him. He does not have friends. He's not learning." Every school day we would leave the same way for the entire school year.

Not only is watching your son struggle, not have friends, to be labeled and seen as "the bad kid". Im not saying the school labeled him, I am not even saying his teacher said that, she didn't. I think you understand what I'm getting at here. On top of all of this, theres the other parents.  Id like to say what they think or thought didn't bother me, but of course it did. Many times when a child is acting out or the way Parson did you know adults are thinking "Dang that kids parents need to get him under control." I know I thought this same way until we had Parson.

This next moment at the end of this school year changed they way I interact with children and parents alike. A child from his class walked up to me and said "My family member said that Parson is bad. He's bad because you let him do whatever he wants and he does not have any consequences." You guys , this is a five year old child talking to me about what their adult family member said about my child. I looked at the student and said "Parson has consequences for his actions just like you and anyone else does when they make bad choices. I grabbed P and I practically ran out the door.

Though I may have responded decently to the student. I wanted to shake their family member. I wanted to shake them and say you have no idea. No idea how many things we've tried, how many books we've read. How many times I have had to hold my child until they scream themselves out so hard that they are nearly asleep. Be cautious when you are speaking around your children. They hear you. Be slow to judge when you see a child and parent having a difficult time. You never know what they are going through until you are in their shoes.

We had a nice scheduled summer. On Mondays we baked, on Tuesdays we went to the beach and library, on Wednesdays they spent time with their Grandma, on Thursdays we went to a special park and on Fridays we had pizza night. Rinse and repeat the whole summer. Constancy made our family run as smooth as possible.

I read nine books the summer of 2016 on parenting techniques, helping your child succeed in the classroom, strong willed children, and on children with high functioning special needs in the classroom. All along they way praying, God you know him. He's struggling, I know he's made perfectly, just they way you designed him but help me, help him. I am flying blind here. Just tell me what to do.

I felt equipped for the 2016/2017 school year. I put him on the bus the first day of school and we were all excited. I was pressing down the fear that was welling up in my soul and letting the optimism show. All the while begging God for a better year.

Thursday, September 22, 2016

Media. The good, the bad and the crazy.


**By no means is this post boasting, supposed to make you feel guilt, or start a "Mom War."**

That being said...all negative comments an move along kindly.

Media. Ipads, TV, Laptops, Cell Phones, Leapsters, ect. We are surrounded by it. Our kids are surrounded by it. Personally, I love it. I mean, Aaron works in media. Our lives and lively hood revolve around media.

Media can be good. It keeps us in touch with friends and family. Aids learning. It's fun and relaxing for some. Ebooks, E-Bibles, online school, Facebook, Kids websites and game. Educational...well not Facebook really, But have you seen those Tasty videos?! Its like cooking school!

Media can be bad. It opens doors to addictions that before media were much harder to get to. Online gambling, Pornography, ideology, judgement, and cyber bullying. Not that these things didn't happen before...but it was harder.

Media can be crazy. There is no start and finish, Netflix binge anyone *raises hand*. Its a brain suck. You literally withdrawal from media, "Screens", just as you would caffeine.  It makes it hard to sleep, it makes it hard to focus, it makes my kids crazy.

That last note, "It makes our kids crazy". Guys, I'm not joking. They turn into crazy people when they have to much media. Like, screaming aliens.

Aaron and I saw this. We saw how the kids behavior changed literally drastically when they had all the media. When I say all the media I mean, about an hour of shows in the morning when they woke up, about an hour at 4pm when I was cooking dinner, and then one short show after baths before bed. So 2.5 hours of media time per day. Then, I would say to myself, "They are not even getting that much media time! They won't be affected by it!" But they were.

Aaron and I made a crazy decision.  A decision that isn't right for everyone, frankly I don't think its right for us sometimes! We decided to cut out ALL media. Everything, TV, educational websites, leap pens, cell phones in waiting rooms, all of it.

Our kids don't have any media at all Sunday through Friday evening. Friday evening we do family movie night and on Saturday we let them watch a show or two when they wake up. Thats it. They are getting the amount of screen time in a whole week that they used to get per day.

Its been crazy. They withdrew. I withdrew. How the heck was I going to get ANYTHING done without a brain suck for them? It took about a week of constant "I WANT SCREEN TIME!" "Please Mama just one Daniel Tiger" YOU KNOW HOW HARD IT IS TO SAY NO TO DANIEL. It.was.rough.

Some beautiful things started to happen. They used there imaginations, they played togather and didn't need me, because their brains were thinking clearly. They do art work and listen to muisc and a few books on tape. They are making up games and doing puzzles. Not because the screens were taken away, not to earn the media time, but because they have learned that there is way more than just media for "fun". We are cooking, reading and cleaning together, and enjoying it.

They are dirty and tired at the end of the day. My house is so messy at the end of the day. I am exhausted at the end of the day. But they are happy. They are happy children, not entertained zombies.

Like I said, this isn't for everyone. Maybe your the lucky one who's children don't turn into tiny crazy people with media. Most days I am thankful we did this. Lots of mornings I wish I could just drink my coffee to the sound of PBS Kids rather than the active playing off the bat.

The benefits outweigh the odds for us every day of the week. Even when I think about throwing in the towel we make it through and we are never sorry that we did this.

- Patty

Monday, September 19, 2016

Figuring out how to fill your cup.

A few months ago I read one of those posts that says "You can't pour from and empty cup, take care of yourself first". I thought, that's right! I matter and I'm going to choose a goal and make time for me and make it happen. My family will be just fine. 

So, I decided to take up running. Training for a half marathon to be exact. I LOVE running. For 11 weeks I ran regularly 3-4 times a day. The first 8 weeks were physically challenging and not too time consuming. It was an easy way for me to get out for 30min to an hour a day. It was cleansing for my soul to. I felt so great after a run!

I got to run races with my bestie. We got to talk about all things running and connect and share a same interest on a different level than we had in a while. It was glorious! 

The training runs got longer. I kept saying it's only 9 more weeks. You need to fill your cup first, remember your better when you do this. Except I wasn't feeling better.

I mean physically yes! I lost weight, I ran ten miles without stopping, which had been a goal of mine for a long time! I was connecting with my friends and making time for me! 

Something was missing. I was missing precious time. Precious hours during the week. Dinners and bedtimes. Aaron would get home from work and I'd have dinner ready. Instead of sitting down to eat with my family, I left him at the table with the kids and I would go run. Taking care of me, right? 

Why was I feeling so awful when I was supposed to be feeing great? When I was filling my own cup? Achieving my own goals?

I realized a few things. First. I really do LOVE running. I got my body strong enough to run eleven miles. That felt so good. I had a goal and I was SO close to reaching it. Two. My family is what fills my cup right now. I was missing so much. To many it may seem like nothing. What's a few hours a week? To me, to my life right now, those hours are precious. 

It came down to priority. What were my priorities? I choose them. 

I chose my kids and my husband. Not because I felt like I had to. Not because Aaron couldn't do it. I chose them because they fill my cup.

Someday, I won't have faces to wipe. I won't have early bedtime stories to tell and bath water to be splashed by. Someday I will have time to run all the miles I want. 

Until then, I'm proud of how hard I ran and how many hours I made happen per week. 

People fill their cups there own unique ways. No one way works for each person and one way is wrong. This, this is what's right for me. 

- Patty

Monday, August 1, 2016

Quinoa Power Bowl with Cilantro Lime Drizzle

Im taking a quick break from writing about Wyatts journey to share this recipe with you guys!

A few weeks ago I jumped on the power bowl/smoothie bowl trend. I don't consider myself a "trendy" person at all, ask any of my friends they will attest to my confidence in my "uncool-ness". That being said, I do love a good food trend...mostly because I love good food.

SO, power bowls and smoothie bowls (appeared) to be easy to make and filled with all the yummy things that I eat on a regular basis anyway. As well as something I could throw together and eat quickly. I am very guilty of just eating the last two chicken nuggets left over from the kids. (There is a post coming on that too!) I was perusing Pinterest and came across a few recipes that looked great. I went to the grocery store (without a list, see fail below) and was prepared to buy all the things I would need to make some delicious meals.

I got home and unpacked all the groceries that I bought just to realize I had a ton of yummy delicious things...all of them being an ingredient for one or the other recipe but not the ingredients for a complete recipe. (should have brought that list)

Armed with confidence I tried anyway...this is what I ended up with.

It looked delicious, so naturally I posted a picture on Instagram, grabbed a diet coke and took my first bite.

Hmm I thought. Its not terrible. I could eat the cilantro lime drizzle on a spoon without anything else. Sweet potato, perfect. Tomatoes great. The quinoa and the spinach arugula mix....not good. It was bitter and had a super strange texture. ALSO. I added Tofu. Oddly enough the tofu was delicious....not delicious on a power bowl.

Lesson learned with the power bowl thing. Keep it simple with like flavors...don't just throw what you have in the bowl. Unless you like strange textures and bitter greens.

It was not a total fail...the cilantro lime dressing is to die for! Ill share that recipe with you guys below because its life changing. Eat it on won't be sorry.

Bon appetit!


Cilantro Lime Dressing

1/4 C Plain greek yogurt
1/4 C Chopped fresh cilantro
Juice of 1/2 a lime
A pinch of salt, pepper, and chili powder
A squirt or two of Sriracha (I added this, it wasn't in the original recipe from Spoonfull Of Flavor)

Blend until smooth and enjoy! 

Thursday, July 28, 2016

Wyatt Stanley - Part Two

If you missed part one of Wyatts journey you can read it here.

Wyatt at 15 months 'army crawling' around the playground.

I had just gotten off the phone with our pediatrician. She said it was time to see a neurologist and to get an physical therapy consultation. She gave me the name of her first pick pedatric neurologist and a program in our area called Early On for PT.

When I hung up the phone, I didn't know what to do. I sat on the edge of our fire place for a few moments just watching the boys play. Thinking, "There is something wrong with my baby." I started to research elevated pedatric CK enzyme. Things like Muscular Dystrophy and Williams Syndrome came up. I learned more about the CK enzyme and what the possible causes could be. As a mother, I hit my knees more and cried out to Jesus more than ever. But this, this was a different kind of prayer, a prayer of desperation. Pleading with God, "Please, just let my Wyatt be okay."

I called Dr. Syodes office to get Wyatt a first consultation. I spoke with the scheduling nurse and she said that it would be a SIX week wait. I thought, hold on. Wyatt needs a consultation, theres something wrong, how am I supposed to wait SIX weeks?  We heard a lot of "well maybe its not to serious since they don't want you in tomorrow" type stuff. Which I get the good behind the comment, I get the support and love that was behind it. SO, if I seemed rude when that comment was made, I am sorry. Every single time I heard that, I thought,  "yeah maybe." Maybe my child situation isn't warranting a emergent run to the nearest neurologist. Maybe that just means the neurologist is so busy with other kids with illnesses and syndromes (insert a whole slew of angry conversations I had with Jesus) Regardless, something is wrong with my a Mama (bear) it does not matter what the problem is, no matter how big or how small. You want it fixed, figured out, solved, whatever...right now. How was I supposed to wonder, and think, and research for SIX weeks before our appointment. The nurse said to call once a week to see if you can get a cancellations appointment. So, I called every other day. After about a week of me calling they found an appointment for Wyatt a few days later.

Two days before out first neurology appointment, Wyatt had his initial evaluation with our case worker from Early On. Aime, from the start was just so kind and reassuring. She did her evaluation and looked at me at the end and said "Wyatt has the gross motor skills of a 8-9 month old infant" Yep, thats right. My at this point, my 16 month old toddler had the gross motor skills of an infant. He should be learning to run and kick a ball, instead he's learning to crawl and pull up.

Let me add quickly. We told our family, close friends and life group what was going on shortly after we figured this all out. Guys, I don't think we or Wyatt will ever know the amount of people that were praying for him and us. The kindness and support we got from people was (and is) astounding, and we are forever grateful for every single one of you that dropped off treats (or wine) and came and prayed with us and for us. Really, thank you.

One person in particular went out of her way, she deserves the most beautiful angel wings and extra sparkly halo. That person is my friend Jeannie. Jeannie went above and beyond supporting me, listening to me, praying with me and for me and Wyatt. Jeannie has a daughter who has lots of needs and who is sick. Jeannie understood. Even though Wyatts situation was no where near similar to her Rivers, she was there. She understood what it felt like for a Mama to have something be wrong with their child. She just was there every single time I needed her. I don't even think she knows just how much she meant to me and our family through this.

Two days later, we dropped Parson off at Grandmas and drove to GR to meet Dr. Syode. We walked into his office and it was clean with brightly painted walls. We checked in and waited no more than a few moments before the nurse called us back.

She did the standard weigh and measure and asked us a billion questions about family history. She smiled and said that Dr. Syode would be in shortly. When he came in, he was bright and kind. He asked us questions and did a pretty good evaluation of Wyatt. Then he said its obvious that he has myopathy throughout his body, much more so in his lower half. Then he said we needed more blood work and a urine test. He also said that these results would take four to six weeks to get back because they needed to be sent to Mayo Clinic. Awesome. Apparently these neurologists like to do things in six week increments, and I didn't think calling every other day would move it any quicker this time. Im totally kidding. BUT really?! SIX weeks. So he told us where to go to get the labs done and made a a follow up appointment with him shortly after.

I dropped Aaron off at work, gave grandma an update and off to the hospital I went. I wasn't going to mess around with the other labs first this time. I got to the hospital with my only army crawling 15 month old. You know whats gross? Hospital floors. Hospital floors that your 15 month olds face is two inches from when moving. Naturally I didn't let Wyatt crawl all over the hospital, he snuggled up in the sling next to my growing belly with little sister inside.

The nurse called us back and said we needed to get Wyatt setup for the urine sample first. She said she wanted to get the collection bag on him and in his diaper first. She said she wanted it first because they needed to draw a lot of blood, that they would need to draw from both arms. That the pain from the blood draw usually made the toddlers urinate enough for the sample. Im pretty sure thats when my eyes started to fill with tears. She asked "Does blood make you queasy?" No, the thought of my child urinating in response to pain does though. I didn't say that, but I sure thought it.

Another note. I have such a respect for parents and families that have children that are ill and have to do this on a regular basis. I just don't know how they do it. How they watch their children go through things like this daily.

We got Wyatt situated and then they did the blood draws. They needed five or six viles of blood. I don't remember which because it was crazy. After the blood draw was over, I scooped Wyatt up to comfort him and get him calmed down. Then we checked his urine collection bag. You guys, there was so little urine in that bag, you would have thought he hadn't drank anything for days. The nurse was as surprised as I was.  She sent me home with a goody bad of urine collection bags, a sterile container and a whole bunch of other fun stuff. She told me the lab hours and said to try and get a collection at home and just bring it back and drop it off.

Let me just say, getting a urine sample from a little boy who drags his torso and lower half across the floor and sleeps on his tummy is damn near impossible. Well, totally impossible. I went through 14 collection bags over a few days and did not even get 1ml of urine. I even brought him to the pediatricians office to have a nurse place the bag...nothing. Fantastic.

So we met with our PT for the first time and started working very aggressively with Wyatt to get his gross motor skills up to par.

Two weeks later he started to crawl on all fours and pull up!

We waited our six weeks and packed our things and headed to our follow up with Dr. Syode. He received the blood work back from Mayo and said that Wyatts CK enzyme was still elevated higher than he'd like to see. He also said it wasn't high enough to point flags at degenerative muscular dystrophies either. Thank you Lord for that answered prayer. He said he thought it could maybe metabolic, that maybe his body wasn't processing nutrition or waste properly. But, guess what he needed to confirm that....the urine results.

So we got good news of it probably not being a degenerative muscular dystrophy. We also were still in the dark because we still had no idea what was causing this for our Wyatt. We also still had to try and get that urine sample.

We made our next appointment and had a plan. Keep on working with PT aggressively and get that stinking sample.