Life is a Journey

Letters

October 10th, 2024

I.D.E.A.

The Individuals with Disabilities Education Act (IDEA) is a federal law that guarantees children with disabilities access to a free and appropriate public education (FAPE). IDEA also ensures that children with disabilities receive special education and related services, and that their rights are protected. This law was established in 1975, renamed in 1990 and reauthorized in 2004. It has not been updated or reauthorized in 20 years.

D.E.I.

Diversity, equity and inclusion

Diversity, equity and inclusion is a term used to describe policies and programs that promote the representation and participation of different groups of individuals. DEI encompasses people of different ages, races, ethnicities, abilities, disabilities, genders, religions, cultures and sexual orientations.

Letters. Letters that sometimes bring out the worst in people. Letters that are so important to me. Letters that are essential to my son’s future.

My circle knows that our son is adopted. My circle knows that our son is black and white. My circle knows that our son has Autism. Our son relies on the IDEA Act to access services needed in order to get an appropriate education tailored to his needs. Our son relies on funding given to public schools to provide those services that he so desperately needs. Our son relies on that funding (albeit never enough) to be allocated to public schools not given to private ones. School Choice for all parents is a joke. My child does not have a choice, there are no laws to protect him and provide him with special education in a private school setting.

The right to a free and appropriate education sometimes means access to affordable after care with staff at that aftercare who are trained to help children with higher needs. Access to services that are offered outside of the school day instead of having to miss classes 3 days a week to attend OT, ST, PT and other therapies. Access to jobs for parents that pay a livable wage. Can you imagine a family of 5 surviving on one income in this economy? No way, but now imagine that a 2 income household where one parent can only work during school hours of 7:45-2:40 due to a lack of after school options available to your high needs child. Now imagine your child has therapy appointments twice a week, that is another 1.5-3 hours you are missing work. It’s impossible. We have to do better. We are supposedly the greatest country in the world. Why can’t we do better?

My son also relies on diversity, equity and inclusion. He deserves to be celebrated and given the same opportunities as others who might not have the Autism superpower. He deserves to be included in everything, no matter what. He deserves the opportunity to be seen just as much as everyone else. DEI is often used as an insult. Next time you hear it used that way, or god forbid you use it yourself in a negative way…look at this face and come tell him that he doesn’t deserve to see others like him in positions of importance (diversity). Come tell him that he isn’t entitled to the same opportunities as everyone else (equity). Come tell my son that he does not deserve to be included because he is different (inclusion).
Floating

October 2nd, 2024

When the seas get rough Dory says “just keep swimming”. What if you don’t have the energy to swim anymore? What if the effort to keep swimming is just too much for you right now? How do you keep your head above water? You float. You give your body a second to rest and you just float. Sometimes all you need is a second, sometimes a few minutes, and sometimes you need to float for days.

There are stretches of time where everything seems to go wrong. Bills pile up, your dog needs surgery, you have to pay for drivers ed, your dog needs a second surgery because the first one didn’t work, car tags are due, insurance is due, meltdowns happen night after night…everything piles up. All at once. Sometimes it seems like there is no end in sight. You feel like you will be floating forever.

Then something happens. A friend from work shares a kind word, your best friend listens and lets you vent without passing judgement, your child gets her permit, your son rocks a job interview. Your little is able to handle some big changes at school that you are so proud of.

When swimming you focus on the rough water and what moves to make to get through it to safety. Out of breath, sore muscles, exhausted, and blind to where to go. Everything looks the same and you feel lost. I think just floating lets you not only rest, but gives you the opportunity to pause and really see what is good. Your muscles relax, your breathing slows and you recharge and are able to see the way to land. To the good. To your safety.

When you feel lost, take a minute to just float.
Disappointment

September 22nd, 2024

We are a family made whole by adoption. We started doing foster care in 2020, it was something I have always felt the pull to do. I always joke that I forced Aaron to go along with it and it ended with completing our family. All jokes aside, I didn’t force him, we made all decisions together as partners.

Foster care was a long, bumpy road. We had the privilege of being a temporary shelter for several children over the last 4 years. We bonded, loved and cared for not only them but their bio families as well. It is not our place to judge others. It is our job as good humans to help those in their time of need. We strived our best to do just that. We formed lasting bonds with a few families, others we didn’t but we always tried to make sure everyone knew they were supported.

Our last foster placement came to us with parental rights already termed. His foster care journey ended with us and he is our son forever. Charlie is now 4.5yrs old. He may not look like us, he is biracial (Black and Caucasian) but he fits in our little family like he was meant to be there.

People tell me all the time that he is so lucky to have us. Nothing about this child’s beginning was lucky. Now, his story is his to tell, I hope one day he is able to share it. But he experienced more in his first almost 3 years than most people do in a lifetime. Heartache, pain, change after change after change. A lot of things he didn’t understand and things that were extra hard for him because Charlie also has Autism.

Sometimes we get stares and whispers when we walk places, like I said, Charlie doesn’t look like us and doesn’t always act like a typical 4yr old. It is disappointing for sure when strangers whisper as we walk by, but nothing is more disappointing than going to a family function and having that happen. Well, I guess the only thing more disappointing is when something is said directly to your face. Charlie was being introduced to a family member he hadn’t met yet. “This is my son, Charlie. Did you know we adopted this little guy?” My husband says with love and excitement in his voice. “Yeah…I heard” this family member said with hesitation. “That’s okay. It’s okay. Everyone needs parents I guess.” The family member added. I froze. I was so caught off guard I was frozen. I didn’t know what to say. Why should we know what to say? Why is it something that even matters? We have never been met with a comment like that. Looks and whispers I can handle…but saying that to our face and in front of our child?! Absolutely not. Not acceptable. Hate has zero room in our life. It should have zero room in anyone’s life.

I feel sorry for this person. He will never know the joy that is Charlie. He brightens a room when he walks in, he makes everything magic.

What does a parent say in that moment? How do you say something without starting a family riot? Or do you start the family riot?
Regulation

September 15th, 2024

Have you ever been so excited or upset about something that you just lose control and can’t control your body or emotions? It doesn’t happen very often for me, every now and again I will have something huge happen and it is exhausting to experience.

We have a 4.5yr old neuro-spicy kiddo who is on the ASD spectrum. He is high masking, that means that (usually) in social situations he mimics neurotypical behavior. The way I think to describe it is I imagine him as a balloon. While we are visiting family or while he is at school he is able to stay regulated. Each time he resists the urge to stim or scream or run I think of the balloon filling with air little by little. I would imagine someday he fills multiple balloons. By the time the visit or school day is done those balloons are ready to pop. I can’t imagine the effort it takes for his little body to remain regulated for an extended period of time.

Those balloons usually pop at home. All of those emotions that he filled those balloons with throughout his day come out all at once. This is the side of autism most of our family and friends don’t get to see. The playful, talkative, easy going kiddo they spent the last few hours with isn’t there. All the anxiety and stress he has felt is able to pour out because home is where he feels that he doesn’t have to mask. He has moments where he isn’t verbal, all his words and language get lost in the balloon explosion. I see the anxiety in his eyes when the cheese he got isn’t the right one. He wanted white cheese and I got him yellow. Now, that might seem like a small thing to most, but to a child who has held it together as long as he possibly can…it’s the end of the world. There is no more room for air. That balloon is gone.

All we can do is just be there. Help him meltdown safely and be there to hold him when he is ready for comfort. I can’t remember where, but I read something one that said “It is not our meltdown to stop”. His body needs to let it out. All those hours of holding it together, it needs to come out. It is our job to facilitate so he can let it out safely where no one gets hurt and he is safe. I do my best to keep myself regulated through it all so I can be there for him. There are so many times that I excuse myself after all is well and go sit in the bathroom and shed a few tears. It is hard to watch. It is hard to see your child go through this. It is hard to know he doesn’t want to meltdown, he doesn’t want to hit and bang his head but his little body just doesn’t know what to do. I do my best to share my calm. It is so incredibly hard sometimes, but that is my job. My job is to keep my children safe. I will keep doing it no matter what that looks like.
Hello World!

September 2nd, 2024

This is my very first blog post, so bear with me and my struggles.

I have always been a talker. I enjoy talking to people. I love finding out what is important to them and sharing what is important to me. I even love a good old fashioned debate every now and then. Everyone is passionate about something, sometimes it takes a while to figure out what that something is.

I recently turned the big 4-0. People in my circle might find it hard to believe, but I have only recently found my “big girl” voice. Now, I have always been able to talk to folks in my circle about the things I feel are important. It is talking to others, the public, strangers that I have found most difficult. I have focused on this fear that people will think less of me or won’t like me if they knew how I feel about certain topics. But you know what? Who cares? Other people shouldn’t get to dictate what is important to you.

My goal for this blog is to post about things that are important to me. Things that I find incredible. Things that are hard and sometimes heavy. Grief. Love. Loss. Family. Friends. Politics. Social issues. Good days, bad days and everything in between.

I am writing for anyone and everyone. I am writing for myself. I am writing for my family, my children. I am writing to show that everyone has a voice and that voice is important.

I promise (probably) my posts will get better over time…

Love to all,

Sarah

Letters

Floating

Disappointment

Regulation

Hello World!