Dx

I started writing this over a year ago, so unsure of what I wanted to say. I finally got it all together.

When Bug was 4 we put him in pre-k. We knew he was a little behind with his speech, but thought he was like any other kid otherwise.

A few months in we spoke with his teacher, and she told us that there was something wrong with him. Well… that’s not exactly the best way to tell a parent there’s a concern. She also failed to give us anything specific as to what she was talking about. So we assumed she was an ass and pulled him out.

We got him set up in speech, but his speech teacher wouldn’t tell us anything about what she thought was going on. All she would say is that he was improving.

When he was five we went to talk to his Kindergarten teacher, I let her know that I had concerns with his fine motor skills and his speech. That was the hardest year of my life. Just to give you a comparison, my parents died young, I was raised by a narcissist who had rage issues, and was abusive. That was easy compared to Kindergarten.

He had ongoing behavior issues, everyday was a red mark in his folder. I hated that folder. He failed every subject. I was getting letters sent home from his music teacher. I was talking to his counselor about testing, I was calling the special needs administrative office, and I was strong in my google fu. I googled everything I could think of with his symptoms, except the one I didn’t see.

I never saw him as being special needs. I saw my little boy who just needed help catching up.  At the end of the school year they finally gave me a diagnosis. Moderate Intellectual Disability. I remember sitting there, reading everything, all the test results, and weeping. I had some experience with special needs kids growing up, but there’s something about that gut punch when you start realizing that everything you dreamed of for your child, is now going to have to change dramatically.

At the same time I was watching Osito, turning one and not speaking, not wanting to eat food, hating water, and knowing that he was Autistic. I prayed, cried out to God, how can I be the mother of two special needs children? I’m not strong enough. The thought of having two boys running around that need so much of my help was and is so daunting. Who am I that I should shoulder so much? How can God truly expect this of me?

I have come to learn that God doesn’t call the equipped. He equips the called. I am not strong enough to be their mother, but God is my strength. I’m not strong enough to go through nursing school, be the Student Nursing Association President, help my friends, be a wife, and have a house… but God is.

God is strong enough to take my babies farther in this life than I can hope or dream. He loves them so much more than I can imagine. He’s my refuge when it gets too hard and my biggest cheer leader when I get it right. No matter what, my hope is in him alone.

Finding Dory *spoilers

I was unsure of whether I wanted to see Finding Dory or not. I read a few spoilers and people’s take on it, and after talking to a friend, off we went. I wasn’t disappointed. It really is cute. Yes, I cried.

Dory suffers from short term memory loss, making her special needs, and her parents tried to guide and help her as much as they could… and then the day came when she got lost, and was on her own. I know my biggest concern as a parent is that the day is coming when my boys will be grown. I can try to prepare them as much as I can, but in the end, they will be on their own at some point.

This movie gave me hope, that there will be a Marlin or a Nemo to help my boys find their path. It reminds us that the work we do now lays a foundation for the future, and that they will remember these lessons. It shows us that our children are teachers as well, that sometimes thinking outside the box… and asking what would Dory do, gives us the perspective we need in tricky situations. Most importantly, it shows us that there is enough room in the sea for everyone, and that every life is important, special, and has meaning.

 

 

Summer time!

Summer is in full swing, and somehow I managed to forget how intense it is when the boys are home. I began the summer catching up on missed sleep (thanks nursing school…holy crap) and then began projects around the house. 

 Then the boys got out for the summer. Oh. My. Goodness.

 Bug has issues with change in routine. Any change. So school letting out and endless days at home sound wonderful, but he acts out so much. It’s really difficult to do anything other than endlessly parent him and talk him down from the ledge. 

 He’s now on ADD meds, which help him focus, but add to his anxiety. It’s not so bad that I’m wanting to take him off, but it’s there.

We made the trip (6-8 hour drive depending on meal breaks and pee stops) to see Gabe’s parents. We marked it on the kids calendar, talked about it, how long the drive was, etc. Bug still flipped out the week before we left. He flipped out on the way home. With all the other things that went on while we were gone, I’m not sure I want to go back. That’s another post though. 

 In all, I want so badly to do all the things a mom and wife are “supposed” to do. Have a clean house, have the energy to cook dinner, work with the boys on reading/writing/sensory issues… and I constantly feel like I fail. I do exactly what has to be done, and that’s all the energy I have.

ARrrrrrrD meeting

Bug recently had his IEP meeting (called an ARD meeting in Texas) and I don’t think they ever really get easier. This year I was really questioning myself and had to lean on some friends. Thankfully God put people in my life who have the inside scoop! I have two different special needs teachers as friends and some baseball mommies from Bugs team!

It’s so important as parents to have people in place that can support us. It’s even more so when you start adding special needs to the mix.

I was at Target a few weeks back and my cashier has special needs. He’s so kind, and gave me his church card and told me about his friends. He read my shirt that day, which is one of my favorites about being a special needs mom. Yesterday I had my boys with me, and he told me how feels very strongly that the special needs community needs to stick together.  He told my boys how he knows what it’s like to have special needs, and while I don’t think they understood yesterday, they will someday. I’m so grateful that there are older kids willing to talk to younger kids and help them on this path. Who better to understand the challenges than one of their own?

One of those *Duh* moments

I just had one of those moments in the car where I feel like God kind of smacked me upside the head.

This past Sunday our church did child dedications, and as beautiful as it is to watch these babies and parents have this moment together, it also hurts my heart. It always takes me back to when our boys were dedicated, and we held such high hopes for them, and how our hopes for them have changed and how the future seems a little bit scarier.

For everyone who asks receives; the one who seeks finds; and to the one who knocks, the door will be opened. (‭Luke‬ ‭11‬:‭10‬ NIV)

Our pastor did his sermon on prayer, and how God will answer our prayers, because he loves us. Well, guess my prayer…. If you guessed never ending coffee supplies you’re close! I pray continually for my boys to be healed. Bug needs better fine motor skills and I pray for the healing of his mind, so he’s no longer ID. I pray Osito is healed from Autism and for God to heal his mind so that the world isn’t Osito overwhelming for him.

So I’m driving home today, after taking both boys to the store for last minute Thanksgiving supplies. I’m mentally exhausted from the crowds and the kids being themselves. I’m praying my prayer for my boys. Crowder’s song comes on.

It hits me. What if God feels the same way about us? What if he made Adam and Eve with so much hope and promise for the future, and now here we are, broken, not understanding his plan, hurting and in need of healing. What if he’s waiting for us to all be with him again before he heals us all. Wouldn’t THAT be a cool moment? I mean, the whole earth could understand fractions at the same time.

So I’ll wait on his timing, and find joy in these imperfect moments, even if it’s a little scary and I need and antidepressant to do it. 😉

Another season of change.

The last two days Bug has not wanted anything to do with school. “Mama, I not go to school. Listen to me Mama, I said no!” is our recurring theme. Or, “I sick Mama.” *cough* *cough* “I sick Mama, I not go to school.” I’ve been trying to show him the calander and count down to Thanksgiving break, but he’s just more antsy about the change in schedule. He’ll then go back to school for three weeks, and then we have Winter break, more routing changes. Hopefully he’ll weather them a little better this year than he did last year. Maybe he’ll remember… a little bit… and that will comfort him that this isn’t really a change, that it’s just a continuation? I can dream right?

It’s too hard.

Bug loves to ride his bike. He loves all people and is a very social boy, but, he has a hard time talking and isn’t always understood. He also doesn’t understand verbal language well. So he’s a boy who wants to play with all the other kids, as long as there’s no talking involved.

Yesterday there was a boy outside that Bug wanted to play with, and the boy says, “You talk weird and you’re not in my grade, I don’t know your name.” in such a snotty tone. Bug had no idea what the kid was saying and went on talking about his school bus.

I have no idea what to say to these kids. I can’t ever think of anything to say in the moment, and I want to show all of his potential without highlighting his differences. Maybe, “You’re right, talking is hard for him. He just wants to ride bikes with you. His name is Bug.”

Any advice on how to explain special needs kids to other 6 year olds?