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.

But he doesn't LOOK like he has Autism....

Yet again, it's this question....
"What does Autism look like?"

The hard part is that Autism doesn't have a look, persay. There are some similarly characterizing behaviors...but even that isn't very efficient for 'picking' out a child with Autism. Each child is so very different. Let's say there are 50 parts to Autism...one child could have 20 of them, another could have a different 20 and a third can have 10 of the same of the first child and 10 the same as the second child. All three will have different issues and behaviors. Autism is very hard to put into a box. I rather prefer it that way, anyhow.

When people I know meet Ryan (people that we don't spend a LOT of time with), they say "He doesn't seem like he has Autism", or "I couldn't tell anything different about him". I just kind of smile and nod. My son takes a lot of pride in having nice manners. He says please and thank you, he doesn't typically have a meltdown in public anymore (barring no issues arise), and he says "what's your name?" and "nice to meet you". He seems like a quiet, well-behaved child. And he is. Mostly.

Then when these people come to my home, or spend a little more time with Ryan, they begin to see him a little differently. His sensitivity to food, his inability to understand video games, his stimming behaviors, when he gets frustrated or upset, his odd behaviors, his language...etc. Then it's "yes, now I can tell he has Autism".

My son functions very well on a day to day basis. He's very smart, he's talented in many areas of life, he's loving, caring and sensitive...why does he have to LOOK like he has Autism or BEHAVE in a way that 'shows' his Autism in order for people to understand who he is on the inside, the part that really matters?? He's not Rainman. You can't always just TELL by looking at a child.

Is my child Autistic? Or does he have Autism??

I struggle over this 'word game'. It means the same thing on the surface. Bottom line is that my son has been diagnosed with Autism. What does it matter? It probably doesn't. But I HATE the word Autistic. Hate it. It's pretty irrational, really. And I'm not sure where it even began.
Perhaps it's because it's so labeling. I feel like if you call a child Autistic...it somehow diminishes all the strengths they possess. It overshadows the child and puts this blanket of AUTISM over them.
I prefer to say my son has Autism, because he can also have a sense of humor, a big heart, a loving personality, an interest in snakes and insects, a dislike of loud noises and large crowds, a love of ice cream and a fear of food.
Many people feel different ways about this issue, and none are more right than any of the others...
I just had a moment where I wanted to state my viewpoint. :)

I wanna be an Astronaut...when I'm thirty.

Ryan has had the dream for a couple years now to be an astronaut when he grows up. Actually, he says that he is going to be an astronaut when he's thirty. It's amazing to hear him talk about it, and the questions he asks are so smart. I have mixed emotions at this point about it. On one hand, I am going to encourage him to reach any goal he wants. Afterall, I'm his mother. I am going to fight for what he wants til the day I die. But, I worry that there may come a time where some of his dreams are not going to be a reality, and how am I ever going to tell him? I hope and pray that day doesn't come but the reality of having a kid with special needs is that there ARE going to be some things in life that just aren't possible. How do I prepare for that? Obviously, at his young age, there is so much hope and potential for him and with increasing information, there is going to be a vast world for him. But as he grows older, smarter and more aware, he is going to want things that may not be feasible for him. I don't know how I'm going to do it.

Medication Update

So the Adderol that Ryan was trying didn't work. There was virtually no improvement (no negative side effects, either, which is good!) and I am not going to continue medicating my child if there is not a significant change. I did notice a slight increace in the clarity of his speech, as well as a little bit more ease in formulating thoughts and expressing himself, but it wasn't enough to warrant the use of the drug. So after visiting with the doc yesterday, we decided to try a different medication with a little higher dose. I am excited about the possibility of finding something that will help him, but I'm also realisitic in the fact that there may not be anything that will help. More to follow...

Autism Education in Classrooms

I decided that it was important for me this April to go into my son's classrooms to talk to their classmates about Autism. I chose age appropriate books as the base of my talk with them, and I printed out a blank Autism Awareness ribbon coloring sheet for the first graders (this is the class my son Ryan, who has Autism, is in) and a fill in the blank worksheet for the fifth graders to fill out while I talked. When I arrived at the school, they called Eric to pick me up in the office. He was a little nervous and embarassed for me to be talking to his class, but he was also excited. I arrived in the class and Eric's teacher had him introduce me and tell his classmates why I was there. Mr. O, the teacher, asked the class "How many of you know someone with Autism?" A fair amount of children raised their hands, probably about 40% of the class. Then a little girl spoke up and said "I have Autism". All eyes turned to her in surprise. None of the children had known previously, and since she has a fairly mild form, no one had seemed to notice. I was touched that she felt comfortable with my presence there to share this information. Mr. O asked again, with a smile on his face, "NOW how many of you know someone with Autism?" The entire class raised their hands. I had Eric pass out the worksheets as I made my way to the front of the class. I began by asking the children if they had any questions before I started. Of course there were many questions, but what impressed me was the quality of the questions! They were really thinking about this topic and asking very smart and mature questions. "Can you get Autism when you go through puberty?" was my favorite question. There were two children who had siblings with Autism who offered insight, which I so appreciated. The little girl with Autism shared some information about what it's like having Autism and she told me about how she uses Echolalia at home, but she's not sure why. She said she "just likes it". This was special for me to hear, because perhaps when Ryan does it, he's doing it just because he likes it; not because of another potentially negative reason. Who knows :) She then asked me if puberty was going to be harder for someone with Autism. I was very moved that she wanted to ask that, however it is not a topic I am familiar with yet, nor am I the right one to talk to her about it!! So I recommended she and her mother go to the library and get books on it. Over all I was BEYOND thrilled with those fifth graders. They were smart, attentive and open minded. This is why it's so important for our children's futures that they are educated on diversity of all kinds at this young age.
Next I went to Ryan's classroom. I have been there before to read and I must say, the kids are particularly fond of me. I think it's because I bought Ryan a pet snake and they all think that is totally cool. I walked in to a chorus of "IT'S RYAN'S MOM!" and "HI RYAN'S MOM!". It was hearwarming. I sat in front of them and asked them if they had ever heard of the word Autism. One boy raised his hand and said "I've heard of it but I don't know what it means". I read the book called "Some Kids have Autism" and then asked the children if they had any questions. Boy, this was a different group than the fifth graders!! HA HA HA One little girl who was wearing glasses said "I think I have Autism in my eyes because I can't see very well." How can you not smile at that? They were also concerned with HOW do you get Autism? It was hard to explain to them but I assured them that kids with Autism are born that way and they can not 'catch' Autism. Ryan was very happy and comfortable talking about it and shared many comments with the class. They did not seem to look at him differently and many almost seemed bummed that they couldn't 'have Autism, too'. I then had Ryan help me pass out the Autism Awareness Ribbon coloring page and they were excited to color it. A couple of the little girls gave me their sheets, which was quite moving. The little girl in the glasses wrote on hers (after asking my name) "Amanda is Ryan's mom and she is osum, Ryan is osum too". I about died. :)
I also sent a letter home with all the children letting their parents know that I was there and what I had talked about with the kids. I provided my information in case there were any parents that had further questions or to let them know that there is support available should they, or someone they know, need it. Overall, it was one of the most amazing experiences of my life and I am DEFINITELY doing it again. I would love to begin a reading program to visit all the classrooms in all the school district. But...I'll start with one class at a time :)

Medication

Many people have talked about medication for symptoms of Autism. There is medication for behaviors, attention and many other issues that can be related to Autism, including seizures and gastrointestinal issues. My son's situation has thusfar never required any medication, which I've been thankful for. I don't like using medication (for myself or my children) any more than absolutely necessary. However, after the visit with the neuropsychologist, I've had to rethink my stance on medication.

She recommended that Ryan begin taking Adderall for his extreme attention issues. She thought that it would help bring his attention to a more manageable level. I was concerned with side effects and she explained the possibilities very clearly. These included appetite loss and emotional distress on the short term and decreased blood pressure on the long term. All of these things can be reduced or stopped completely with the discontinuation of the medication. I decided to take the risk and try out the medication.

We started this past Saturday (3 days ago). So far I haven't noticed any negative issues but he does seem to be speaking more clearly and correctly. Today is the first day at school and I'm excited to see how it goes. One mother told me that her son reacted very well at home but school became overly stressful while on medication.

The hardest thing about knowing what paths to take regarding treatments, etc with children with Autism is that they all have such different needs and react differently to everything. Because something worked (or didn't work) for one child doesn't mean it won't work (or will work) for your child. It's all a big trial and error method of parenting...well, more than normal :)

Introductions

Today we were doing a photo shoot for our Faces of Autism campaign and a fellow Autism Mom was there with her daughter and her son with Autism. Her daughter is around Ryan's age and is very cute. Ryan noticed and wanted to talk to her. He asked her mother if he could talk to her (the ultimate gentleman!! lol), then proceed to ask her what her name is, (with prompting) offer her his name, and awkwardly sticking his hand out to shake her hand. He concluded with a "It's nice to meet you".

I couldn't help but cry.

Ryan was trying so hard to perform the correct social duties. He wants to know the proper ways of doing these things, even though they are very challenging for him. He wants to have nice manners, say the right thing and do things 'just like everyone else'. It makes me cry for two reasons. One is happy and one is sad. It makes me cry out of happiness that he is growing, developing, and he WANTS to learn these social nuances that are so hard for him to understand. It makes me sad because it IS such a challenge for him. It was painful and awkward to watch him thinking through every movement, every word, searching for the right thing to do next. It's almost like he was talking to himself internally, going through this step by step, like we do in therapy.

We take for granted simple things such as extending a hand to someone when we first meet them, or casually saying 'nice to meet you!'. For Ryan, this is a step by step process that he has to be aware of all the time. But what makes me so proud is that he is doing it on his own now. I didn't prompt him to introduce himself. He WANTED to know her name and to meet her. Take THAT Autism!!

The War on Food

Ahhh, food issues.
I know virtually every child with Autism has one food issue or another (or all of them!) but that doesn't make it any easier for my child. He has done food therapy, which has helped; primarily with helping us to deal with it, rather than help him eat more! But he still is stuck on the same few foods he's always eaten. He won't eat any vegetables. He'll eat a couple fruits (applesauce, apples, bananas and grapes) but won't explore new fruit options such as melons, oranges, berries, etc. Meat has to be prepared a certain way and typically if it's cut into pieces, he'll eat it with ketchup. But trying casseroles of any type are out of the question. He has just recently began using taco shells when we have tacos, whereas before he would simply eat the taco meat with a spoon. He loves any sugar and candy and chocolate.
I continue to try to give Ryan options on what he can eat besides these basic foods he's grown so comfortable with but he refuses. It can be hard during the holidays when a holdiday meal is prepared and Ryan won't eat one thing on the table.

Neuropsych Results

I received Ryan's results from the Neuropsych today. I have mixed emotions. Now, I already met with her to discuss the results so there isn't any major shock however, reading the results on paper, in black and white...

It hits a nerve.
It makes it REAL.
It sounds so clinical.
It makes him seem so....

AUTISTIC.

I'd like to share with you some of the things that were written in this evlauation. Partly to help clarify my feelings to myself, as well as so that you may understand Autism and Ryan better.

"On examination...it was initially very difficult to get his attention. I approached him in the lobby and he was watching TV. I had to call his name several times in order for him to look away from the television and engage eye contact. He initially seemed confused or perplexed. A few moments after I introduced myself, it was as if things suddenly clicked for Ryan and he initiated an introduction. He appeared rather scripted and intrusive with respect to personal space in doing so, but clearly this is a skill he has been working on. Very shortly into the interview, he began interrupting his mother to tell me things. ...he often repeated back fragments of the questions that had been presented to him. He was also heard underneath his breath repeating some of the words that either his mother or I had used in conversation. Thus, echolalia was quite prominent. Ryan's play seemed as if he was in his own world and seemed to center around scenes or themes from favorite cartoons, TV shows, movies, etc. Nonetheless, he would take breaks from this activity to share stories or engage our attention in some way. When he did, his comments were seemingly random. When he did try to tell a story, it was very difficult to follow him. His discourse was choppy and disjointed. Mild articulation difficulties were appreciated. He showed poor appreciation of figurative speech, irony and humor. Ryan appeared to have a hard time understanding even basic questions. Ryan's spontaneous speech was much better. Overall, Ryan appeared to be a little boy who was largely lost in basic conversation."

sob sob sob

"Emotion regulation and sensory issues appeared particularly prominent. At one point, Ryan bent down and was huffing and tearful. When asked what was wrong, he commented that his pants would not stay tucked into his boots. He was told that he could take off his boots if he wanted to. He immediately kicked off his boots and then when the examiner asked if he felt better after taking off his boots off he seemed to get more frustrated and angry."

"Ryan did seem to want to please the examiner, but he seemed to have difficulty following instructions."

"There was occasionally the sense that he might be tryuing to be directly oppositiona but for the most part Ryan seemed to simply have a hard time complying with what was being asked of him. He usually knew when to say he was sorry for inappropriate behavior. It was interesting that on one occasion while the examiner was waiting for him to answer a question he asked her if she was mad. This suggest some difficulties with accurate reading of nonverbals."

"The Wisconsin Card Sorting Test was attempted, but was discontinued due to poor effort and Ryan's frustration level becoming too high."

"Ryan's performance on force choice questions was impaired as well, suggesting that much of the information was simply not processed or registered."

"Neuropsychological data are suspected of underestimating this bou's intellecual abilities. Ryan's emotional reactivity made it very difficult to know if we were fully getting his best effort throught the course of the assessment. What does seem quite likely based on data and history is that this is a boy who continues to struggle in the verbal domain."

"Ryan strugges with organization of information and planning."

Recommendations from Dr. Amy:

1. Continued therapy.
2. Continued IEP services.
3. Stimulant medication for attention disorder.
4. Continued monitoring of Ryan's cognitive development.

Initial Diagnosis to Neuropsych

'Pediatric neuropsychology is a professional specialty concerned with learning and behavior in relationship to a child's brain. A pediatric neuropsychologist is a licensed psychologist with expertise in how learning and behavior are associated with the development of brain structures and systems. Children are referred by a doctor, teacher, school psychologist or other professional because of one or more problems such as: difficulty in learning, attention, behavior, socialization or emotional control; a disease or inborn developmental problem that affects the brain in some way; or a brain injury from an accident, birth trauma, or other physical stress. A neuropsychological evaluation assista in better understanding your child's functioning in areas such as memory, attention, perception, coordination, language and personality. This information will help provide treatments and interventions that will help meet a child's unique needs.' (taken from www.div40.org)

I was recommended by Ryan's Speech and Occupational therapists to have an evaluation done by a neuropsych. When I was in the process of having Ryan diagnosed, I was very unfamiliar with what to do. I had been hearing for years that he was 'fine' and that 'boys are slow, he'll catch up' but I knew in my heart that wasn't the case. When his behaviors and lack of speech got to a point where I couldn't wait any longer, I took him to a speech therapist...to me, he wasn't speaking so it was logical. I am thankful for this decision because I found the most amazing people there who have helped me and Ryan in this journey. While we were doing the initial evaluation of Ryan for his speech problems, they noticed that there was a lot more going on than a spech delay. They recommended me to see an Autism specialist. I was scared, alone, embarassed, nervous, all the feelings one would expect walking in that doctor's office. The doctor gave me a ton of paperwork to fill out and then spent around 15 minutes with Ryan in a tiny, uncomfortable room. At the end of it he told me "Ryan has Pervasive Developmental Disorder-Not Otherwise Specified. It's a form of Autism. He'll be labeled as having educational Autism so he can have services at school."........ and he walked out the door.

Um...excuse me?? What the HELL do I do now?!?!?! He gave me virtually no information. He didn't give me any leads on where to get information on my own. He basically left me to figure it out on my own. I didn't know where to turn. And the problem here, is that this happens to SO MANY parents. This is NOT the abnormality. It's the norm.

Thank goodness I had such amazing people who recognized me, my needs and Ryan's needs and have been there every step of the way. At first, I wasn't ready to learn. I wasn't ready to accept. Ryan's speech and OT taught me, without pushing me, that everything is going to be okay. And as I grew, they offered me more and more information. Then Fate stepped in and allowed me to meet a wonderful friend who introduced me to the Autism Support Group. From there it's been a whirlwind of growth and an explosion of information.

So, based upon the recommendation of Ryan's therapists (who have never steered me wrong) I took Ryan for some more formal testing. This probably should have been done 4 years ago with his diagnosis. But no one told me about it. I didn't know it was an option. And really...I probably wouldn't have been ready for it then.

I went to Neuropsychology Associates for an initial interview. I met Dr. Amy Meidinger. We spoke about Ryan. I explained everything from before diagnosis, through diagnosis and the time since. We spoke about problems, issues, joys, and everything else that makes Ryan 'Ryan'. After this appointment, we scheduled a full day for Ryan to come back in for testing. I was full of excitment, hope and tons of fear. What was this going to mean? Would it change anything? Would I found out things I don't really want to know? What if they were wrong before and he doesn't have PDD-NOS but something else?

I brought Ryan back a week later for his testing. He woke up in a terrible mood, which is abnormal, but figures! It's going to be a long, challenging day. He wants nothing to do with the routine change of not riding the bus to school, going somewhere he's unfamiliar and being separated from me once we get there. I just pray he does well enough so they can get accurate results. He got one break for lunch...so I took him to McDonald's playland. He did NOT want to go back there. I could hear him through the door; frustrated, angry, confused... I wanted to help him, I wanted to tell them how to ask him the questions differently so he understood easier, I wanted to just wisk him out of there and make him happy. But I couldn't. I shouldn't. We need these results to help him better in the long run.

When 6 hours of testing were finally over, I got to take my exhausted baby home, with the intent to return in two weeks. The results that I received were not overly shocking (thank goodness) but they were sobering. Ryan does in fact have PDD-NOS. He also has an attention disorder which is contributing to his issues. He is smart but easily frustrated and distracted. Dr. Amy believes we are doing the right things for Ryan and encourages us to continue. Overall, I am pleased...until she recommends putting Ryan on medication for his attention issues. WOW. Really? Okay... this is new. No one has ever mentioned medication before. What kind? What would it do? Are there side effects? How long do they take to work? Will it alter his mood or personality? I had so many questions come spilling into my mind, swirling around, scaring me.

Deep breath. She said to talk to Ryan's pediatrician (who is AMAZING, by the way) and get more information. I also wanted to talk to my fellow mothers, get their opinions. After all, they are the ones who live with these things, just like I do.

Well...opinions of my peers is that it doesn't hurt to get information, talk to the doctor and give the medication a shot. If we don't like it, quit. Simple. So that is the path I am taking moving forward. I am still in the process, so that will be discussed further down the road.

Bottom line: I'm so thankful to have advocates for both myself and Ryan. In my personal life and within the professionals we work with. What an amazing community.

Parenting

As parents we try to do everything we can for our children. We make decisions daily that may determine who they become, where they will go in their life, how they will view themselves...and it can be overwhelming. Sometimes parenting is the biggest joy in my life but there are times it's the biggest burden, too. It's a burden because of the huge weight that rests on my shoulders. Who thought I was qualifed to do this job, anyways?? Who gave me the right to teach what little I know to these perfect little babies?
I've made many poor choices in my life. Some are bigger than others, but they all result in a worry about how it's affected or is affecting my children. Especially Ryan. I always wonder if I'm doing enough for him, if I have made the right decisions, if I am following the proper paths to ensure that he is able to grow to his full potential. And I know that there are times I fail at this.
The other day, Ryan had gotten into trouble because of his violent behavior towards his sister Clara. He was sitting on the couch pouting when I heard him mumble something. I said "What, Ryan?" and he repeated louder "You're a bad mom".


gasp.



Did he really just say that to me?


(tears)


"Please go to your room, Ryan".


(more tears)



What did I do wrong? Why did he say that? He's never said that in all his 7 1/2 years. I know he was upset because I had gotten angry with him but...did he really mean that? Am I a bad mom?


I know (hope) he didn't really mean that. But it's the first in probably a long list of times where I am going to feel like a complete failure as a mother.

BUT...today is a new day.

Nagini: A Boy and his 'Pet Snake'

Ryan has been asking for a snake for MONTHS. It began sometime last summer. He started talking about a 'pet snake' and he told me how pet snakes are nice but wild snakes are mean. He asked if he could have a pet snake. I told him maybe someday. I figured this train of thought would jump the tracks fairly soon...as most of them are short lived. This subject did not die. So finally, I caved. I began researching and emailing with breeders to find out what snakes were the best for beginners and for small children, what the care would entail, expenses, etc. I had a friend who had a tank to sell and we began the process! I found a beautiful snowflake corn snake at PetCo. Ryan was thrilled with it. We brought it home, set up the tank and really just enjoyed watching our new pet. Ryan asks to hold her every day. He loves watching her eat the pinkie mice (teeny tiny baby mice that are still pink and hairless). His focus is sharp, his language is clear and he is paying attention to something outside of himself. He adores holding her and he tells me all about what's happening while he's 'playing' with her. He notices little things in her skin and was thrilled to see when she shed that first layer of skin. I can talk about science with him; life cycles, metamorphasis, eating patterns and reproduction are some of the topics we have covered already. It's really amazing. Clara has been excited about the snake, though Eric and Mike are a little less than thrilled. :) A snake is not the pet I would have picked for our family but it's been amazing so far. It's been very beneficial to Ryan and that's the most important thing.

Sibiling Rivalry

I know there is a standard amount of conflict that arises between siblings...however, with my son Ryan and daughter Clara, that level is spiraling out of control. I believe they hate eachother. And I'm at a loss to know how to fix it.

Everything Clara does bothers Ryan. Her typical 2 year old behaviors send him into a sensory overload that usually results in anger and a meltdown. She doesn't understand how to share or that sometimes objects belong to other people. So when she 'steals' something of Ryan's, he flips out. He hits her. He kicks her. He slaps her. He cries and screams and pulls his hair and hits his head with a closed fist. He stomps and slamps doors. These behaviors also come after she enters his bedroom (she doesn't have to do more than just walk through the doorway) or if she does something she's not supposed to but that doesn't involve him. For example, the other day, I asked her to hand me something and she threw it on the floor instead. Before I could even move to respond to her behavior, Ryan had grabbed her arm and yelled "CLARA! NO!" He feels like it's HIS job to discipline her, to reprimand her. He doesn't understand that what WE do is not okay for HIM to do.

On the other hand, she is not an innocent bystander. She knows how to get him riled up and she does it on purpose. She takes his toys, she screams at him, she pokes and prods him, she scratches him...she only does these things to him. She waits for the perfect opportunity and she strikes. It's really bothersome to me. I feel like she's bullying him. And she's hardly 2 years old!

The stress of this situation is really starting to wear on our family. I don't know what to do. Neither of them really understand. Ryan says things like "I hate Clara" or "Clara is too loud" or "I don't like Clara"...and about Nicholas (who can be equally annoying) he says "The baby is SO cute!" or "Look at Nicholas!" It breaks my heart.

Christmas Vacation

Sigh.
Changes in routine are always hard for children with Autism; even if it's supposed to be something 'fun' like Christmas vacation. My son gets off his routine and schedule and it makes everything more challenging. He doesn't like not knowing what's coming up, or what's going to happen next. He is much more emotional and on edge during these times.
We began our vacation on Thursday night; leaving Fargo around 6 pm in the middle of a snow storm. We spent the night in a hotel in Miles City, MT and continued to my parent's house in Kalispell, Montana the next day. We arrived around 6:45 pm Christmas Eve, very much to Ryan's delight. He loves my parents. They have a special bond...it's quite amazing.
Ryan did pretty well Christmas morning. He and his brother got up at 6:30 am and I told them it was too early to wake everyone up. We watched 'A Christmas Story' until 8 and then I told them to go get Grandpa and Grammy up. His patience was tested while he waited to open stockings and later his gifts. The joy he gets from his gifts is amazing. He is truly thankful for everything, and usually his favorite toys are small, cheap little stocking stuffers. I love that about him. He doesn't need a $300 gaming system to be happy. Give him a little rubbery ninja that you can shoot with your fingers and he's good. Later that day we went to my grandparent's house for supper and more gifts with family. We have a Thanksgiving type supper for Christmas; turkey, stuffing, mashed potatoes, gravy, green bean casserole, the WORKS. Plus my Aunt Joy had brought some veggies and dip, and also made an amazing avocado/salsa dip. There was so much food! As I went to dish Ryan up...I could hardly find anything he would eat. All this amazing food and he wouldn't eat any of it. I think he ended up with a dinner roll, a banana and some ham. I wish I knew why foods were so hard for him. I wish he could enjoy all the different foods available to him. But then again, he doesn't care. Maybe I shouldn't either. He doesn't feel like he's missing out on something...so maybe he's not. It might be one of those times I need to put my notions of what is "special" to the side and see the world through his eyes. He doesn't need special foods or a fancy meal to be happy. He's content being with his family.

I took Ryan to the new Chronicles of Narnia movie. WOW! What a great movie! He was so good during it. There were some darker, scary parts and he leaned in close to me, and finally asked to sit on my lap. I don't mind. I like listening to his questions and the running commentary he has about different things he sees in the movie...however, the other patrons probably don't. I kept asking him to be quiet, and just listen. He turned to me and said "but I just want to tell you something!" I stopped caring about what the other people might think and he and I shared a wonderful experience. He was very excited after the movie and I again reveled in the pure joy that he has in his life.

We went snowshoeing one day. He was so funny! He kept eating snow. He would find these harder pieces of snow and eat them. He told me that it tastes like ice cream. I laughed and disagreed but didn't discourage him. He walked along with us without complaint. He loves being in nature. Hiking is also something he does very well for a child his age. He gets angry when we have to stop and turn around. While we were trudging through the snow, he liked to look for deer and other animals. We didn't see anything but it didn't diminish his optimism.

Another day we took him to an indoor mini-water park thing. It had a shallow splash pool for younger kids and a huge waterslide on the other side. There was also a lap pool and a smaller therapy pool. He loves the shallow pools and likes watching the buckets dump water out, but doesn't want to be splashed by it. He also refuses the waterslide. This is the kid who loves to ride the largest roller coaster possible but he won't go down a waterslide. He did amazing in the lap pool, however. My dad took him in there and Ryan was eventually jumping off the side of the pool without my dad catching him! It was amazing :) He is getting much more comfortable in the water. This was an area of stress for Ryan for many years. I'm so happy he is learning to enjoy it.

Grandpa took Ryan and Eric sledding one afternoon. Ryan found this hilarious because Grandpa was screaming the whole way down the hill. But Ryan also went pee and poop in his pants. He still gets so focused on what he is doing that he will completely stop paying attention to his body and it's needs. (He also had 2 pooping accidents on the drive home as well...it was a pretty big regression for him.)

Saying goodbye to Grammy and Grandpa is a near-tortuous event. For Ryan and myself. I can't help myself from crying, which makes Ryan very upset. He cried this time for about 20 minutes. He doesn't understand the distance between their house and ours. When we arrived at the hotel that night, he said "Tomorrow, we go back to Grammy and Grandpa's house". Usually after a few days he gets back into routine and we go about our regular lives. This time was different. The stuggle for Ryan to get back into routine was harder. I think as he's getting older and is more able to express himself, his feelings are getting stronger. The tranisition back into school and therapy was challenging. It took about 3-4 weeks for things to really get back to normal; for him to stop crying and saying 'I miss Grammy and Grandpa' every few minutes.