Mainstream

IMG_7966I don’t spend a ton of time thinking about my children’s special needs or differences. Until I’m forced to.

Lately I’ve been forced to a lot. Between IEP’s and new dx’s for my babies, I’ve not really been given a choice.

On a lonely or especially hard day, it can creep up on me. Those days are just for me. To weep, to morn, to settle my heart. I will call on my friends who are on the same journey or lock myself in my room at night to indulge in my favorite tv show or just check out until I feel better and stronger. Ready for the next day.

But when it’s not on my terms it can be really hard and kind of scary. My children’s differences have been front and center lately and I have to admit that I’m worn down. Facing this world and broken systems…New therapies. New therapists. New schedule. New demands. Now we have a lawyer and our options feel limited. I’m beginning to question the path we are on.

We want to mainstream Eli. We believe in him. But I’m losing hope in the system. I’m losing those big dreams we had for him.

Eli is a smart and capable child. He is also nonverbal and still delayed in many skills.

I’m going to be really vulnerable and say this right here, right now- I’m scared. I’m scared that when we are done fighting, Eli will be treated differently. That we will be looked at as “those parents” that are fighting a lost cause and forcing our child into a traditional classroom where he doesn’t belong. My mind races with thoughts about parents complaining- resentful about his special needs or different behaviors, the extra help he needs…Will he be viewed as a burden or distraction? As annoying? Will they just ignore him because that’s easier? Does he really belong? 

And don’t get me wrong. We aren’t fighting because we are unhappy. Eli has been well loved and his team of teachers and therapists have been nothing but wonderful. But he is about to start kindergarten and we have to increase rigor- at home and school.

There are times I question why I’m pushing so hard. Why we spend so much time and money on therapy. But the fact remains that I have a child with special needs who is nonverbal. If I don’t fight, then I have no hope left in my heart that anything will ever be better for him. And he deserves every opportunity. All of my children do.

It would be untrue if I told you I believed Eli will talk. We continue to take him to therapy, so I suppose somewhere deep in my heart I hope for it. But I’ve turned to different fights. Bigger fights.

How do you feel about mainstreaming special needs? 

This summer we are taking a break. No therapy except some ABA and riding lessons. We all need a break and time to regroup, find hope. Last summer was full of just as many emotions (mostly grief over our move to Alabama), and this summer needs to be family, pool, crafts and ice cream. I never thought I would feel the weight of special needs the way I feel it right now, and I only pray that we are making the right decision for our children.

Easter

This Easter was strange and quiet- as first holidays away from family tend to be. 

We tried to start some new traditions in hopes of filling our time and engaging the kids but we kind of failed. Which should really be our new tradition- failure. Haha We tried community egg hunts- twice. And wound up with less than 10 eggs between the kids from both hunts combined. It’s brutal out there. My mom asked me if I remember going to community egg hunts as a child. When I couldnt recall she laughed and said there is a reason for that- we never went! (Side note- parents, can egg hunts *not* be fight club for kids? Kthx)

The kids did have fun and it was nice to get out of the house. We made plans with some friends here to have Easter dinner, the only thing I was really clinging to for a feeling of normalcy and we all got sick so we cancelled.

Easter morning, with all of our noses running, we hunted the eggs the bunny had left, ate candy and slept. I face timed with my family later in the day but it was hard. It’s always hard. And with my social media filling up with everyone’s family and food pictures, I just wanted to crawl back in bed and get a do-over. 

When we were in Texas I used to dread big family holidays. There. I said it. But it’s true! It’s not because of family at all. There is always drama. Stuff doesn’t go right. It’s a busy day of running between houses and carting tires kids around. But now? Now that we are so far from all that we know, I miss it all. I wish I would have tried to embrace it and enjoy it more. It was bittersweet to be able to see everyone on the phone and I’m so thankful for technology. 

We are trying to make the holidays special for our babies and put more roots down. It’s another way we are working to embrace Alabama and this new adventure. What I want to remember is the good things about our new Easter- our dear friends who showed up with Easter dinner, the kids excitement over their baskets and discovering eggs in the yard, the way we came together as a family and explored our community, and these sweet faces; because despite it being different, it was still good. 

ASD

In a whirl of emotions, I’m trying to write out the information I just received. It’s not any one particular emotion and the over all feeling is that I have had a weight lifted- so this is a good post 🙂 I promise. 
We have been waiting for this day for over 3 years…a step toward more information and understanding for our Ruby. Today, Ruby was officially diagnosed with ASD.

I know some of you aren’t surprised. If you’ve spent time around us (especially in the early years), you might have been subjected to the mess we were. And if you didn’t, then it’s probably because I cancelled plans with you because we were such a mess. From struggling to have play dates to just getting out in the yard so the other kids could play, every outting presented unique challenges and sensory upsets. But there is still a level of shock for many, including us. While ASD is a spectrum disorder, Ruby doesn’t follow a lot of the “rules”. Her history of sensory issues, emotional outbursts, and delayed social emotional abilities is what brought us to this moment. But on the outside, Ruby is very typical; she makes decent eye contact, has age-appropriate speech, plays with her toys, and can be very affectionate.
As it was explained to us, girls (specifically) like Ruby who are on the spectrum are not typically diagnosed until they are older, when they are beginning to have trouble developing more complex relationships and are presented with a higher demand for social interactions.

Understanding that ASD presents differently in everyone and that Ruby’s brain is wired differently brings so much peace for me at the moment. We have been given direction and we are entering a new chapter. 

I’m not sure that listing all the reasons for her diagnosis or the specifics of her diagnosis does much, if not to validate it further. I’ve always known (even before she was born) that Ruby would come to us with her own unique Rubyness. I just knew. And part of me was afraid but today I just feel that it’s nice to finally know.

Do you know someone in your life that has ASD? Would it help you to know more about why we looked into testing and what specifically had us concerned when it came to Ruby’s development?