Jul 6, 2012

Special Needs

I'm pretty much convinced that parents with children who have "special needs" have very SPECIAL NEEDS. I'm going to say something and risk sounding very pompous and big headed (I guess those are pretty much the same thing.) For the most part, I try to live selflessly. I don't always succeed at this and there have been MANY times that I have hurt people very dear to me. I'm sometimes a little too blunt - I really do try to be loving when I'm blunt - but it's still just plain old "blunt" and people don't always need to hear my *wisdom* or my *what I think is wisdom.* I do though, recognize USUALLY when I've hurt someone and I try my best to correct it.
I try to bless others as much as I can because it makes me happy and I feel fulfilled. Doing something small...even complimenting someone on the way they look that day - is a kind gesture that usually sinks into the heart of the one receiving...and it makes a difference for good.

Zac and struggle on a daily basis with exhaustion of mind and heart (and body.) We are learning on a daily basis how to parent a child with a neurological special needs...meaning that day by day, hour by hour, minute by minute....we have to communicate in a way that is not natural for us. We have to try and understand someone that doesn't *get* empathy or how to show us love, or someone that is totally focused on their *topic of the last three years.* We have to pick up all the pieces when our child, who is developing normally, get's their feelings shattered to bits on an hourly basis. We have to not see the other kid, who did the hurting, as mean or a bully...because he's not.
I think I feel every day like I have to be three people. I have to be myself, I have to communicate with someone that has Aspergers (meaning I have to think like him) and I have to be a *regular* mom to my daughter. On top of ALL of that....Tristan is starting to show more and more signs of being on the spectrum and is starting to act more and more like Brady. Just this week he has begun to cry when people clap too loud, when water is splashing around him and on him, when we say "no." He is not a sissy if that's what you're thinking. He can run and fall and scrape his knee and keep running. He will climb trees and run into walls and he doesn't come running back to mommy because he got a scrape. When one of the kids says "no" to Tristan he shuts down...differently then a normal toddler would. He won't look in my eyes at all....ecspecially this last month. I am beyond sad.
So....Zac and I have Special Needs. I'm realizing them and I think I'm finally over feeling selfish to say this. We need to be treated like we are fragile. We are strong people ..... but on a daily basis we have a heck of lot on our plates emotionally. I need compassion....I need love....I need to be blessed in tangiable ways. I need a breath of fresh air. I could use a compliment...I could use "service" ... I could use some people in my life who are selfless towards me on a regular basis.

At this point in our lives, we are not open to criticism, I don't need questioning or advice, I need to be loved. It is a given that if I AM critized I will emotionally shut down, and even though I will love that person....I won't be able to have a very close relationship with them because I am stretched to the max in my home life. This feels selfish too me...but at the same time I'm suppose to take care of my mind and heart and FIRST my family. If I'm overwhelmed with everyone around me and how to take care of THEIR feelings, I can't give to my children what they need.
I will share that my husband has pretty much hit rock bottom - he continually trys to be a source of encouragment to me (he succeeds because he is wonderful) and he still is an awesome provider and my BEST FRIEND....but he is fragile(I'm sure he will LOVE the word fragile...but it's my blog and I'm a girl so there) and overwhelmed. He also, could use just sheer encouragment and friendship.
Recently, I have been truly just loving God. In the midst of all of these trials and this pain, I've miraculously been desiring the things of Him and it's refreshing. I don't understand why we are in this place....but I'm going to see HIM in this darkness. I thank God for little joys....for Brady reading out loud to the other kids daily, for water coloring times and cool crafts and projects...for a homemade spinach lasagna cooking in the oven...for a new dress from my mother in law that fits me perfectly. These things don't take the pain away...but they sure do help.
Parents who have kids with special needs HAVE special needs.


Julianna said...

Alyssa, I CANNOT imagine what you and your husband are going through. Big hugs and squeezes to you to being the kind of mother you never expected to be. If you have family in the area, I think you and Zac need a weekend away. :)

Anonymous said...

Alyssa, I can understand only a bit as I have substituted and served as a full-time temp in the Intermediate Unit in the county in which I live. That is I have been in a variety of classrooms working with those with autism, multiple disabilities, and other similar needs. I am to interview for a job next week which will be job training adults with disabilities.

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