A Surprise Visit

Last Friday night, Mike surprised me with Eric (who is Mike's son from his first marriage and who visits his mother out of town during the summers). It's been a month since we've seen him and it was very unexpected for him to come for a visit! What a blessing!!

It was Ryan's weekend to spend with his dad, so I called the next morning to see if I could pick him up overnight so that he and Eric could visit. It was a 25 minute drive to pick him up. Eric was excited to surprise Ryan. He kept talking about what Ryan would do when he saw him.

We pulled up, and Eric and I got out. Ryan came around the corner of the house, saw Eric and exclaimed "Eric!! You're home!!" and gave him a huge hug. On the twenty minute drive over to Grandma and Grandpa Baukol's house, the boys were on cloud nine. They were playing, laughing, watching the crop dusting planes and goofing off. I had tears of joy in my eyes and my heart was bursting with joy, seeing their happiness together and having all my kids together again. When we arrived at Grandma and Grandpa's house, the boys ran off to play. They played soldiers, sneaking around the yard with bb guns. They watched a movie together when we got home.

They have a bond that goes beyond blood. They are brothers. Through and through. It makes me so happy that Ryan can have a relationship like this.

Playtime

Ryan has never played 'normally'. For example, as a toddler, he would lay on the floor and watch the wheels of a matchbox car roll on the ground, rather than use it to 'drive'. He would hold or carry toys around but never use them properly or pretend with them. Even a couple weeks ago when my parents bought him a Thomas the Train track, he used it for a day or two and now only carries the train that came with it around.

And playing with peers has been virtually non-existant. He doesn't have imagination in the way that typical children do. He is too logical, too set to following rules to pretend that something is something else.

We had a playdate with an "Autism Friend" (this is what Ryan calls his friends who also have Autism) the other night. The boys PLAYED together. There were times that they were doing their own thing but they engaged, laughed and played like typical little boys. It was heartwarming. He's made such amazing progress in his social skills!!

Ignorance ISN'T Bliss

Today I'm having that day. You know, the one where I have to decide if it's worth the fight. Is it worth the pain in my heart? Maybe I should just 'let it go' and accept that sometimes I'm going to run into ignorance about Autism (or special needs in general).
The problem is that I can't. I physically CAN'T let it go.

I believe that my calling in life includes being a mom, being a teacher and being an advocate. Sometimes these things overlap. Sometimes I can't NOT be these things...they are me, and I am them.

I understand that some people aren't as knowledgeable as I am; that some people don't have to live every day with that fight in their gut (my fellow special needs moms know what I'm talking about) and that's okay. But what I can't understand is that some people are comfortable in their ignorance. I am dealing with this is my personal life. I know that the easy road is to accept it, move on, let it go... but then I ask myself "if I don't stand up and fight for this, who will?"

Children are blessings, even if they are challenging. To me the challenge makes the rewards that much sweeter. Many people can't see past the 'disabilities' that a child has to see the amazing person inside. There is so much inside every human being, those with disabilities are no different. Sometimes we have to learn how to coax that person out a bit, work around particular issues, accomodate certain situations and needs, but when those things come together...you see the beauty in their differences.

Now I don't expect every person to go learn in depth about every disability out there. But this is my wish: Know that we are all different, we all have strengths and weaknesses, we all have feelings and we are all blessings. Show Grace. And if you have a special person in your life, or if one is going to be coming into it in the future... educate yourself. Arm yourself with knowledge. It makes everything so much easier on both you and the person with special needs. I wish I had known more, earlier with Ryan. I wish someone had taken my hand and taught me the ins and outs of Autism. That's why I fight. That's why I talk about Autism. I want the world to KNOW.

And a side note... Please don't use the R-word. Ever. Don't allow those around you to use it. It's painful, hurtful and derogatory. Know the proper language. My son was referenced in being "mentally off". As a mother, that tears my heart apart. Then it pisses me off.

Fairness

I know that I feel very guilty sometimes. I know other moms feel it too. It's that often joked about 'mother's guilt'. However, when you have a child with special needs and that child has siblings, you are gifted a whole new variety of guilt. Children with Autism require SO MUCH attention, in SO MANY different ways. They have therapies to attend multiple times a week, they need to be watched every second, they need extra attention to learn life skills, they need help accomplishing tasks, doing homework, going to the bathroom, they need constant reminding...in short, they need a LOT of attention. And that's not just from mom and/or dad. They get people that come to the house to spend time with them, they have people that take them fun places, schools provide free tickets to local events, they have special movie showings, everyone is a bit more lenient and understanding.... They are treated a bit differently than the other typically developing children in the household.

And we mothers have guilt.

We feel bad that the other children have to take the backseat sometimes. Once in awhile the sibling's special event is forgotten or is unable to be attended. They are asked to pick up the slack. "Hey, grab your little sister." "Can you pick those up?" "Can you please take these to the sink?" "Please, can you be quiet for just a minute??!!"

When the siblings are older, it is probably a little easier to explain. Though, it doesn't always mean they like it or understand it. When the sibilings are younger, it might be easier because this is how it's always been. They don't know a life without Autism. Doesn't mean they like it or understand it either, however.

I watched a video in class today about Specific Learning Disabilities (unrelated to Autism). The video was filming an excerise for parents, teachers, professionals and friends of people who have LD (learning disability). It was a great video that showed what it might be like for a child in a classroom who has LD. But what struck me the most was a point at the very end of the video.

The teacher in the video asked the group to define 'fair' or 'fairness'. He asked them to look up what the definition was in the dictionary. Fairness doesn't mean that everyone gets the same thing; it means that everyone gets what they need. He spoke a bit about what this means for a child with disabilities in the classroom but then he brought this point around to siblings.

He said that parents often worry about how the treatment of their child with a disability will affect their other children. Parents wonder if it's "unfair" to give this child extra attention, extra money, or provide additional resources for that child, when the other children are not receiving the same things. He said it is FAIR to give each child what they need. Reminding sibilings that 'I would do the same things for you if you needed them' is all a parent must do.

I felt a slight weight lifted from my shoulders today. It isn't FAIR that Ryan has Austim and the other children don't...but it IS fair to provide him with all he needs. And my other children will get all they need in this life as well.

Love.

day 4

So day 4 of my SPED 225 class brought another issue up. When going over the regulations of the IDEA law, we got to the part about offering services to children on an IEP. We were discussing the role of a paraprofessional (paras) because not everyone knew what their job was. My instructor gave a brief description that included helping a special education teacher and being a support person in a regular ed classroom. I piped up and said "they are also paired with a child in a regular classroom setting to support their needs in a more inclusive environment" to which my instructor said "yes, this is true. However, I disagree with this. I believe that pairing a child with a para one-on-one is detrimental to the child's growth. He or she will become attached to the para and may only work with that para creating more issues down the road." Yet again, rendered speechless, I just stared at her. I must have had quite the look on my face because she got an odd look on her face and looked away.

My assignment due tomorrow is a "Reflective Essay" on my personal views of people with disabilities. This is supposed to be a growing exercise for those who haven't had much interaction with the special needs community. I am interested to see how things change after she reads my essay.


:D

Autism is Hip??

As most of you know, I am currently attending college. I am getting my BA in Secondary Education with am emphasis in History, Sociology and Economics (don't ask... ha ha ha!). I hope to continue on to get my Masters in Autism and then eventually my Phd so I can pursue a career as a Superintendent. I want to make our school system as beneficial for EVERY CHILD as it can be. I am passionate about our special needs kids but there are other children that the system is currently failing. English language learners, foster children, homeless children and children who are 'at risk' for needing special education classes but don't currently qualify are a few examples. I want to advocate for the education of America's children. The reason I'm sharing that with you is to set the stage for the classes I'm enrolled in at MSUM.

One class I'm taking is 'Individuals with Exceptionalities'. This is basically "Special Education 101". All future teachers are required to take it, as well as a few other degrees who may be working with people with diabilities or special issues. I could tell on the first day that I was going to have a hard time biting my tongue in this class.

My instructor tells us a bit about herself. She is fairly young, probably not much older than myself. She has a BA in English Ed and a Masters in Special Education. She worked as an regular education teacher for a couple years, a special education teacher for a few years and has been working as a college instructor for 3 years. She shared some facts with us, one of which said "The number of students in special education rise every year". She asked the class why we thought this might be. A few people offered some ideas (of course I did!!) and one girl commented that perhaps the negative stigma associated with "Special Ed" has diminished some and that parents are more comfortable with giving their children the help they need. My instructor agreed and went on to say that "For example, right now it's hip to have a child with Autism because so many people are dealing with it."


Yeah. You read that right.


I sat up like someone had dropped an ice cube down the back of my shirt and I just stared at her. "It's HIP??" My brain couldn't keep up with the flood of emotions that I had and the point had moved on before I was even able to stop staring at my instructor. But my blood pressure didn't go down the rest of class and my cheeks stayed flush.

How is that someone who is supposed to be teaching sensitivity towards disabilities make a comment like that?
HOW ON EARTH would any parent feel 'fashionable' because their child has a disability such as Autism?
How do you explain to a mother with a child melting down for a reason she can't figure out in the middle of the grocery store with people commenting and whispering about what a bad mother she is, that it's cool to have a child with Autism?

I was very frustrated at the end of this class period but had decided that it wasn't the right time to bring the issue up.

Class number two:

We learned about the history of the special education program in the United States. Appalling to say the least but we really have come a long way from where we started. Not to say we don't have a long way yet to go, but that's why I'm here :D

At the end of the class period she opened the floor up for any questions and a guy asked "At what point, when a child is severely handicapped, do we know that this child won't be a contributing member of the society and stop using public funds to educate the child?"

.......

I about fell off my seat. Again, rendered somewhat speechless, I just stared at this guy. The instructor said something PC about "understanding what he means but that's a hard situation, etc". Her answer was weak. By this time I had regained myself and as soon as my instructor stopped speaking I said "It's clear that some children with certain disabilities may never be the President of the United States or a professional athlete or even a cashier at McDonald's, but that hardly makes them an uncontributing member of our society. And who is going to make that decision? Who gets to decide that a child is either worthy or unworthy of receiving an education?? You? Are you going to tell parents that their child isn't worth educating? Their education may take longer and may be more expensive but isn't that what our society stands for? And what do you suggest that we do with the children who aren't worthy of education because of their physical or cognitive disabilities? Put them in an institution?? Children are worth it, no matter their perceived ability to learn and we owe it to them to give them every possible opportunity to learn and grow, no matter the cost."

I sat back exhausted and I wanted to burst into tears. I wanted to tell them that I had NO HOPE for Ryan when he was diagnosed because I was so beat down and scared and frustrated and ignorant to his needs. But now, he can talk! He can write beautiful, perfect letters. He is above grade level in math! He can explain his feelings to me. He is learning to advocate for himself by removing himself from stressful situations or telling adults what is bothering him. He can sing and dance amazingly. But 5 years ago, I wouldn't have believed it. I have SEEN the growth in him because of school and therapies. It had little to do with me. It is due to the professionals who are trained to do this.
Now I realize not every child will have the growth that Ryan has, all children are different and all disabilities affect children differently, but growth is growth. Even if it's small. Ask any parent of a child with Autism about small victories. Sometimes it's as simple as putting one's own shoes on without screaming. Maybe it's using a full sentence for the first time. Perhaps it's eating a spoonful of corn without throwing up. There are tiny victories all the time in our children's world. To even begin to say that we would take that away from any children because of tax dollars...well... it just wouldn't happen.

Now, to be fair, this guy may have been playing the devil's advocate, or perhaps was just bringing up a question. I'm not condemning him, persay. But it brings up an issue that I know many people think about when it's presented. EVERY child is worth it. No matter anything... our children, all of them, deserve education.

(and I'll be taking note of this guy's name so that when my youngest children are in school they won't be in his class ;) )

Video Game Nightmares

Ryan LOVES video games. This in itself is not an issue. He loves the colors, the movement, the music (which he can mimic perfectly, btw...sigh!) BUT he doesn't 'get' it. He doesn't understand the concept of the character 'dying' or losing lives or whatever it is on a particular game. Super Mario Bros for the Wii is the game we've been having the most trouble with. He LOVES it but it is a huge source of stress for him.

He stims from the music and vibrant colors. He jumps, flaps his arms and moves his body is funny, jerky movements following the character on the game. He gets so into the game, he virtually loses touch with reality for a little while. He gets very upset when the character gets hit by an enemy or 'dies'. By the end of a game, he is sweating, red faced and generally just upset and out of sorts.

He has hit Eric and himself during game play because he is so upset. He has cried because of events that occur in the game.

So should I remove the video game from him? Or do I try to continue desensitizing him to it? Keep explaining that it's not real or reality and that it should just be for fun? It's so hard to explain some of these kinds of things to a child that doesn't 'get' imaginary things or 'pretend' ideas.