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.