Monday, September 21, 2015

I'm tired of fighting.....but I can't stop.

Being a parent of a child with special needs means you never stop fighting....fighting for what is right for your child. Fighting being their voice when theirs isn't heard (or understood). Fighting to make sure that they get the services and help that they need so that they can be as successful as possible in this life. It is never just a one time fight but a repeated fight that needs to be revisited every year and reevaluated every year. So several times each year (but the stress of the fight is never ending) I feel like I need to pull out my imaginary "boxing gloves" and jump into the ring and duke it out with providers, administrations, and others that are supposedly there to help and make decisions that are best for my boys. But more times than not it never feels that way. And most times I feel like David going up against Goliath. But guess what....David wins in the end. So that gives me courage, it gives me strength, and it gives me the motivation to move forward and keep on fighting. 

And although Matthew and Andrew have no clue about these meetings and the fight that we are fighting for them. They do know one thing...that I love them and I will never stop fighting for them. 

Andrew doesn't say "I love you" with his mouth, but this is how he tells me when I sign I love you. He matched my fingers with his.

Wednesday, March 18, 2015

"Excuse me ma'am, could you please get control over your son!"

I try to avoid going out in public as much as possible with Andrew. Or at least not alone. But lately he hasn't really been that bad out in public. So I really wasn't dreading taking him to his Kindergarten physical at the doctor's office today. I knew there would be toys in the waiting room and brought the iPad as well, with the hopes of keeping him content and happy. 

When we walked in, he immediately ran over to the toys and was very interested in a play vacuum cleaner. It made noise and the eyes on the vacuum moved back and forth. He turned the toy on and ran back and forth over and over. There were 3 older ladies in the waiting room watching him. When he bumped into one of their chairs a few times she moved her chair back, then switched chairs. I said, "I'm sorry he bumped into you." 

And she replied, "oh no this is better now he can have more room to make that turn! I wish I had that kind of energy." I smiled at her and thought, how nice of her to be understanding of a kid and his energy. 

The ladies tried talking to Andrew a few times, and he, of course, didn't respond to them. Another couple came in and sat down. They smiled at Andrew and seemed amused by his energy and play. 

Next, a pharmaceutical rep came in and started talking to the receptionist. I felt like the room was getting a bit crowded and so I moved some of Andrew's toys and moved over closer to the toy area in hopes that Andrew would stay over in that area. He was just happily running back and forth. I noticed him bump the pharmaceutical lady once and she looked over at me. I didn't think it was a big deal (he is a kid in a waiting room playing with a toy). 

Well I guess it was his 2nd time bumping her and she leaned over to the receptionist and complained (I didn't know this happened) "He just hit me a 2nd time!" 

The receptionist responded while leaning way out of the window in a very curt and annoyed tone, "Ma'am would you please get control over your son! The doctor doesn't like having a noisy waiting room." 

To which I replied, "you know I would if I could! If I do I will get beat on! He is autistic and can't help it!" 

She responded, "Oh well I don't want that." 

I had already turned my back to her and brought Andrew to a corner of the waiting room,where I took the toy away and waited for our turn. As we were waiting, I got kicked and hit and had to deal with a frustrated Andrew. 

The nurse happened to be a friend of mine and when she opened the door to let us back I just lost it and started crying. I held on to her and just sobbed. 

I felt a little ridiculous, but it just hit me how confining having kids with autism really is. The doctor came in and I lost it with him again and told him what happened. He wasn't happy and I think apologized like 50 times during our visit. He is planning on having a talk with his staff and educating them. 

When leaving, the receptionist (who had to check me out), said "Ma'am I am really sorry if I sounded so harsh before. It's just that that lady leaned over to me and said, he just hit me a 2nd time. So I had to say something. I am sorry for how it sounded." 

I just wanted to get out of there and didn't feel like losing control over my emotions again, so I just said, "it was a toy vacuum and he barely nudged her as he ran past." She tried to say something again, but I just said, "Okay, bye."

Why? Why did this situation even have to happen? Why are people so intolerant? He is a child for goodness sake! In a waiting room! With toys! Of course he is going to be playing and moving around. Stopping Andrew from what he was doing (which I thought was fine behavior, I thought the toy was annoyingly loud, but that wasn't Andrew's fault) was risking him having a full on meltdown and running around flailing his arms hitting and kicking everyone in sight and then he actually would have hurt someone. (and probably ruined the pharmaceutical reps presentation) Why didn't the woman just ignore him and say, oh he is just being a little boy? And why did that receptionist feel like she had to say something to me? (The doctor is a pediatrician) And if she did feel like she had to say something to me, why not just say something to me quietly and in private, instead of very publicly and in a curt tone?

I don't understand people sometimes. I try to give people the benefit of the doubt. I try to not judge, and forgive quickly. 

So I guess the point of me sharing this story is to ask...please don't get angry at the kid (or his/her parent) in the waiting room, or in the grocery line, or wherever. You don't know their story. Perhaps they had a bad day, or maybe they are sick (very possible in a waiting room), or maybe there is more behind their behavior than you know. Think about them as humans who could use your compassion and not your judgment.

Saturday, January 24, 2015

"Normal" moments!

I struggle from time to time with the boys having autism. I think it will forever be an up and down roller coaster. I have even said to Eric, "I just wish I had a different life!"

The other week I said this and he said, "Well what would you change?" 

I thought about so many wonderful blessings that I have in my life and how much is great and wonderful. Then I started thinking about the day to day stuff. And it hit me....

I want a "normal" family... 

For example: I would love to have a meal where all 6 of us are sitting at the table at the same time, eating the same food, where we share what we did that day. I'm not asking for this to happen every night, or even for the entire meal, but even for thirty seconds in the past six years would be nice.

At times when I've shared some of these feelings, some parents of typical children have smiled and said, "Oh don't we all wish that. My family is crazy at meal time too!" 

I have read so many different blogs of parents with children with disabilities and hearing "my kids do that too" is a common thing. 

Even though I know that you might be trying to make me feel better and make it seem like my life is "normal", it is actually very difficult for me to hear. 

When I hear this I feel like my personal struggles are being dismissed. Instead please try to listen and understand. Having children with disabilities is not like what families with typical children go through. These hard times are constant for us, instead of sporadic. 

Also with "normal" kids there is an ending to misbehavior in the future, for me that end may never come. It's a difficult thing to express to people (and please don't take offense) because I know my friends are trying to be kind and supportive.

So one thing I wish for are these "normal family" moments. They don't happen very often, but every once in a while we do have them. Today was one of those sporadic "normal" moments. 

It snowed last night and today we decided to go sledding on the back hill behind our house. We got everyone geared up and headed out. We were out from about 9 until 4 o'clock (except for an hour for lunch). It was so great. We laughed, smiled, and just enjoyed our time together. These are the moments I cherish and treasure and hope for more in the future.


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