Tuesday, January 5, 2016

A break through

I haven't posted anything for a while, due to the fact that we have been so busy lately. Most of the time it is a good busy, but other times it is hectic crazy busy. 

We have had some wonderful news of late for our boys. 

Andrew had to get his "packet" renewed for his TSS services, and though it was some work and nudging people out of the mud their feet were stuck in, we put together a good packet and it was approved. No six months of meetings, grievances, and fighting our case to get Andrew the help that he needs. APPROVED! Such a blessing. He is doing so well in school. Renee (his TSS) still has to redirect him very frequently, but he loves going and is learning how to behave and growing academically as well. Renee tells us that his classmates love him and they have taken him under their wings to encourage and include him. We are so happy with his progress.

Matthew just got a psychological evaluation done (by a school psychologist) to see where he was at and to see if he was placed where he needs to be for his education. The results came back with a very clear answer that Matthew is where he needs to be. His school helps him have a deeper level of education but also deeper level of social interaction and communication. So that fight of placement is hopefully shelved for a few more years.

So aside from the boys being settled, where they need to be and with the best people, I had a pretty amazing experience yesterday on my way home from Matthew's IEP meeting. While I was leaving the meeting Matthew's principal, assistant principal, teacher, and speech therapist all told me how great I was doing and that Matthew's success was because of me and my willingness to fight and get what was best for him. I was touched, then on the way home I started thinking about all those people in that room who have been there for me and most especially for Matthew. Then I started reflecting back on my journey through all of this (with Andrew and Matthew) and face after face, name after name, kept on coming to me of different people who have been there for my boys, loved them, supported them, and have helped them to be where they are today. I was overwhelmed with gratitude for all these people and how blessed I have been to have them as part of our lives. If Andrew and Matthew had not been autistic or had the struggles that they have had, I never would have known these amazing people and have them touch my life and my boys' lives. 

It was the first time that I was actually thankful for their autism. That I have been blessed and have grown into who I am today because of it. Is it still hard for me....yes! Is it getting better...yes! I have finally gotten to the point of seeing the blessing of it. And that is HUGE for me. I am grateful for this break through, and I look forward to many more to come. 

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.

Thursday, September 11, 2014

Are you brave enough?

Yesterday EmmaLeigh told me something that happened at school.

She was sitting in class and a boy was laughing about and shared a story about an Ice Bucket Challenge that he either heard or saw (Emma couldn’t remember). There was a group of boys that challenged a boy with autism to do the Ice Bucket Challenge. The autistic boy didn’t really know what they were talking about but agreed to it. The boys then filled up a bucket and dumped in on the autistic boys head. Little did the autistic boy know that the bucket was actually filled up with human waste. Again as I said before the boy sharing this story, with Emma and some other kids, was laughing. The other kids in the group started laughing too. EmmaLeigh was very upset and said “Stop laughing it’s not funny! I have 2 brothers that are autistic and that is just not funny.” (I can’t remember exactly what she said) The boys in the group immediately stopped laughing looked a little sheepish and went back to doing their work. The boy sharing the story then went and shared it with someone else trying to get someone to laugh with him.

When she came home telling us the story she was very upset and was crying about it. I’m sure she was thinking about if that were to happen to her brothers. I know that these boys are children and are probably completely ignorant to what autism is, but even if the boy wasn’t autistic it was still a form of bullying that shouldn’t be admired or thought to be funny. 

This is just so disturbing to me. Why are people doing such awful things to another human being? And why is it getting spread around and being laughed at by others? 

I am so very proud of EmmaLeigh of how brave she was to stand up to that boy and let him know that what he was saying wasn't funny. It made me think.....Am I brave like that too? Do I stand up for what I know is right and stand up for those who can't stand up for themselves? 

Are you?

My brave girl, so proud of her!

Wednesday, June 11, 2014

Matthew graduated from Kindergarten!

I can't believe this school year is already over! Matthew has grown so much this year, academically he has just soared, socially he has grown leaps and bounds, and emotionally he is just growing up. We went to his Kindergarten graduation today. It was so cute. Since there are only four of them it was a very short ceremony but still absolutely adorable. Thought I would share. So proud of our little Matthew!

Thursday, June 5, 2014

Oh Andrew!

I don't even know what to update about Andrew. He is making some progress, but he is just ALWAYS into things. He is so independent (exact opposite of Matthew). I didn't get a picture of him dumping out the shampoo and conditioner and mouthwash down the toilet, but he is into do that now too (some may think or say, "Oh my kid did that too when they were little", I will say to you there is a difference and the big difference I have noticed with Andrew and other kids who might do this stuff is you can actually talk to the child and they can somewhat understand what they are doing and will eventually stop or give up on it, but Andrew is obsessively persistent, it's part of who he is). My brother-in-law says that Andrew only has one speed....FAST. He is too smart for his own good. We are getting pretty inventive in how to keep him out of stuff. He did decide though to be potty trained so that has been wonderful. After 10 1/2 years of diapers I am done (except at night, but I don't count that b/c Andrew takes it off of himself in the morning when he wakes up and puts his own underwear on)! 

I think we will just continue to keep on seeing progress, but I know that it will never be completely "normal". But I have come to wonder...What is normal? Well I think normal is what your life is. And my normal is having the kids that I have and all that comes with them, the wonderful, the difficult, the frustrating, and the good.

Hope you get a good laugh at these pictures of Andrew and his mischief.