Preparing to be THAT mom

I've been preparing for Jayen's new school year. I have never had to prepare for Dalan's school year like this. That alone makes me sad. But I've had to email the principal, school psychologist, and new staff asking for a meeting before school starts. I learned that Jayen's paraprofessional will not be coming back for this next school year so the new hire will not know his seizure protocol. How can send him to school on the first day if they are not prepared for him? What about his feeding concerns? Will they be ready to help him eat on the first day of school? These are my biggest concerns, but also wondering will they know him?
I've been working on a portfolio to hand out to each of the teachers, specialists and paras that will be working with him. I want everyone to know what he can do and how to push him further. He's made so much progress and I don't want him to regress at all. I want there to be no excuses! I want to push him further and make this a great year for him!
I shared the portfolio with Jayen's ABA tutors and his therapists at TEAM 4 Kids. I'm hoping they will have some great ideas and advice to add. I hope that this information is helpful and the teachers will use it. I hope that they see this as a tool that will help them and Jayen. I hope that they see this as a mom who cares and wants the best for their son. I hope that they don't see this as THAT mom just coming in guns blazing and ready for a fight. I will fight, but I don't want to. I am tired of fighting. I hope this school year is a new start for Jayen but also a new start for me. I hope that we can all work together as a team. I hope that we can find a way to help Jayen achieve his fullest potential.

Experiencing a concert

Tonight Matt and I were able to get a little reprieve from our daily lives and try to reconnect as a dating couple again. We were so thankful to enjoy a double date with our neighbors and friends Christian and Eva. The evening was incredibly hot but reliving our childhoods through the cover music, Hootie and the Blowfish/Darius Rucker, and extremely expensive drinks was worth it. I had an amazing time, but couldn't help to think about whether or not this would be something Jayen would someday be able to enjoy as well. The heat would obviously be too much for him, but maybe he could enjoy an indoor concert or outdoor during the cooler months. The music was too incredibly loud for him. Could he still enjoy it with earphones? Possibly. The lights were flashing and flickering and would sometimes shine right in your face. Would this bring on a seizure for him?

What things in life will he miss out on? Would he have friends that would take him to things like this? Would he ever go with a date? Would he someday remember the songs that played on the radio when he was younger and reminisce? I don't know what life has in store for him, but I promise to not let him miss out on every opportunity that is available for him.

All lives Matter!

I've been talking to the kids about all the tragedy happening right now. We talked about how cops have to make split second decisions that sometimes cause a loss of someone's life. We talked about how black people are sometimes looked at differently and treated differently because of their skin color. We talked about how someone decided to kill innocent cops because of the actions of other cops. We talked about a family we know whose husband is a police officer. We talked about how scary it would be to send our dad/husband off to work with people who want to kill him just because he is a police officer. We talked about LOVE and the love God wants us to have for others. We not only talked but tried to put our words into action.
We wanted to stand behind the men and women who put their lives in danger because of their job. They have sworn to protect us! Although our gesture was small, water bottles and cookies, we wanted them to know how thankful we are for them. We also stopped by our local fire station, twice, but they must have been out on a call. We will stop again later and let them know how much we appreciate them and stand behind them!

He read a book!

I can't believe I just witnessed this! I can't believe that I just saw Jayen read a book! He needed assistance, but he read. How amazing. I don't have any words and I can't accurately describe the tears rolling down my face. What an amazingly strong little man who has had to jump over so many hurdles and still gets back up to jump over more. I love him to the moon and back and so much more. Keep going buddy! You will move mountains!