Seeing progress

This past year Matthew has been in Kindergarten. He has improved SO much over this past year. I'm sure a lot of it comes along with just getting older, but I am just so thrilled with how things are going with him. He still has his frustrating moments and his meltdowns, but we are learning how to deal with them and how to help him get over them easier. He is just adored by all who he interacts with. He is starting to interact more with people and seems to have a little bit more confidence with communicating (even though he still can't be understood by anyone). What I have really been super excited about this year is how good he is at reading! He has just picked up on it so much. It's amazing. Since he is at a signing school they don't teach phonics the "regular" way, instead they teach it through what they call "visual phonics", he can sound out some words, but most of his words that he can read are from memorizing (which was the only way I could learn to read). He is also a great speller. His fine motor skills aren't the greatest and so writing has really been his biggest struggle this year. Yesterday his teacher sent home some photocopies of his handwriting at the beginning of the year, the middle, and the end. You can definitely see he has improved. His teacher has been so patient and loving to him this year. We are so blessed to have had her as Matthew's teacher this year. He will miss her. 

So I guess this is just a post of celebrating a successful Kindergarten year! We had some rough patches, but I really feel like we have gotten to know Matthew so much more this year. He is a blessing in our lives.

Not all bad

Lately, I don't know if it has just been more acceptance or if it is because the boys are getting older, but I have been doing a lot better with everything. Especially Matthew, but he is 2 years farther along than Andrew. I still have my frustrating moments (but I have those with my "normal" kids too), but I have come to really just enjoy Matthew. He does some pretty funny stuff lately and then I remember "oh yeah you are almost 6!" I put together some short clips of the fun or cuteness of Matthew lately in the video below.

Andrew is also not that bad either. He is also in the toughest age. I think 3 is way harder than 2! But this summer he will be 4 and hopefully he starts improving as well. He is starting to talk more and seems to be joining the world around him. I put together a little video of him lately. The last clip is him humming the Smurf theme song (he LOVES Smurfs lately).

I really have been trying to have better attitude lately. I know it could be a lot worse. Trying to enjoy those happy good moments and when the hard times come (which I have a hard or down day at least every 4-6 weeks) I try and get through them the best I can.

I have come to accept that Autism is a part of my life. I can't change it and I can't fight it, so I am may as well just go with it.

Life is great, but it most definitely isn't perfect (which honestly I don't think it is supposed to be) !!

He doesn’t look Autistic: And other false ideas about Autism

Eric and I have been talking about what I could post next on the blog. And when he had time today he put into words what we have been talking about.  So here is Eric's post on some of our thoughts that might give people some more understanding.

Raising two sons with autism spectrum disorder (ASD), has helped me to see, in a very personal way, what ASD can look like. Before experiencing this for myself I had some of the same misconceptions that many people have about ASD. As I speak to people about this disorder I often get the same questions and I wanted to address those questions/concerns/misconceptions to help raise awareness and understanding. I also want to emphasize that I am addressing them from my limited personal experiences and not as a medical professional.

1.       He doesn’t look Autistic. In the grocery store the other day our son was holding something we purchased and the cashier saw that he really didn’t want to let it go. She was very kind and used the hand held scanner to add the item to our list. As we were talking we thanked her for doing that and mentioned that we might have had a meltdown if we tried to pry it from his hands. She looked at him and said the phrase that we’ve heard a bunch of times, “he doesn’t look autistic.” There seems to be an idea out there that Autism is something you can see. Although autism is diagnosed by a series of symptoms, they are also not always present. Some people with ASD might be very social and make eye contact with you, while others would have a meltdown in a public place, some may have repetitive movements like shaking their head, or rocking, while others will not. On good days our sons with ASD might act ‘normal’ for several hours at a time. Taking a glance or even a serious look at a child will very rarely help you know if he is autistic.

2.       My child isn’t autistic, he’s smart. First off, try not to say this to a parent of an autistic child, it’s just not nice. This is another misconception about ASD that I think originates from a lack of awareness of what autism is. Most people who say this are thinking about severe cases of autism. As clarification, autism has a huge spectrum that covers challenges including social, communication and behavior. Just because a person can’t speak doesn’t mean they are not smart, nor does the fact that someone can speak mean they have anything intelligent to say. In many cases people with ASD have a high IQ they just have a difficult time expressing what they know. It is very likely that we could learn a lot from people with ASD, if we could just figure out a way to tap into what they know.

3.       How can a diagnosis help? This is a great question that is often asked by those who have noticed some delays with their children and they are wondering if it is worth the work to get an official diagnosis. In some ways, having a diagnosis doesn’t help. There isn’t some magic pill or shot that will cure your child of ASD. But in other ways it can make all the difference in the world. We had two ‘normal’ children before having a child with ASD. The first almost three years with Matthew were frustrating, we tried everything that we did with our first two children and nothing was reaching him. The day we got the diagnosis of autism changed my perspective. When I knew he wasn’t like other children I changed how I thought and that has helped me be a better parent. I gained understanding and that made a huge difference. In addition to understanding, we have now been able to get support through our local school district and early intervention. The wonderful professionals we have worked with have given us so many tools to help Matthew. Some tools work, some don’t, but we don’t feel so alone, and that means a lot. It has also been shown that the earlier a child is diagnosed with ASD, the more effective the therapies are in helping to reduce unwanted behaviors.

4.       They just need discipline. This idea goes hand in hand with the ‘if they’re hungry enough they’ll eat it’ line of thinking. For “normal” children when they misbehave you can reason with them, tell them no, or take the “whatever” away for a while and the behavior will stop or improve.  However for children with ASD that is not how it works. For example, one of our sons draws on the walls. If there is a marker, pen, pencil, crayon or anything to write with left out he will draw on just about any surface. We have tried doing everything we can think of but at the age of almost 4 it still persists. The only way we can stop him is to put every writing implement out of his reach. For the past almost year, we get crayons down only when he has paper and we can monitor him coloring. We encourage writing on paper only, and his behavior is finally beginning to change. This example may seem extreme for any parent with ‘normal’ children, but for parents of children with ASD, this is commonplace, and the kind of thing we need to do for almost every aspect of our lives.

5.       What kind of future can I expect? I don’t know. For me this is one of the hardest questions. I don’t know what to expect for education, career, independence, or marriage. Each day I need to compare Matthew only to Matthew and Andrew only to Andrew. I have hope that all we are doing will pay off and they will be able to one day live independently, and be contributing members of society, but I have no idea.

Through our experiences over the years I have learned so much about ASD, and I know there is so much I still need to learn. I am so thankful for wonderful and supportive friends and family who continue to ask questions and learn what they can about ASD so they can better understand our children, and know how they can help us. I hope this post has helped. 

Completely disconnected

Probably one of the most challenging things for me about Andrew is how little he reacts to things. He really does almost act like he is deaf.  Below is a video of what it is like most of the time with Andrew. He just wanders around and doesn't listen to anything that we say. It is difficult because it's very frustrating and at the same time it's not his fault. 

I never really know what is going on in his head and he is often very violent. Along with this disconnect comes an emotional disconnect as well.  One of the most wonderful and precious things about being a mom is having your children wrap their arms around you and tell you that they love you or that they think you are the best, etc. With Andrew he asks for a lot of affection (when he wants it) but never gives it back. Every night I give my kids a hug and kiss and tell them that I love them. And every single night I get a blank stare or he turns away from me or at times he hits me. 

There have been 2 separate occasions that this was not what happened. 

One time he was being especially bad about going to bed and I was at the end of my rope. After the 15th time (it felt like, I really don't remember the number but it was more than I was fit to handle) of putting him back in bed I leaned down and gave him a kiss and then he did something that he had never done before. He just grabbed me and wrapped his arms around my neck and wouldn't let go! Then he started giving me kisses; over and over again. And every time he kissed me he would lean back and look me in the eye and then squeeze and kiss again. It was probably a couple of minutes of this. I started to cry because he had never done that before and it also calmed me down. After he was done I said good night again and then he went to bed.  

The other time I was doing our night time "good night" and after I gave him his hug and kiss I tried to get his attention and said, "Andrew, mommy loves you." and he just looked away. So I said it again and then I thought, maybe I'll try signing it. So I signed "I love you" and I said, "Andrew I love you!" and he just stared at the sign and then he looked at his hands and he made the sign for "I love you" and then held it up in the air, looked straight at me, and gave me a huge grin. Again, it brought tears to my eyes. That was the first time he ever communicated in the 3 1/2 years of his life that he loved me. It hasn't happened since (but I keep showing him the sign and try to help him make the sign).

So I guess the point of all this is to help share, with all who are reading, that it's hard to have a child completely disconnected.  It is just another one of those things that adds to the emotional exhaustion of having a child with autism. But when I have those rare connected moments they are huge and I cherish them.

The works of God made manifest...

Growing up I never imagined that I would have 2 children with special needs. I always envisioned my "perfect" little family: very well behaved children, immaculate home, adorable children, lots of laughing and fun, and most especially love. And honestly I felt like I deserved that family. I was a "perfect" child. I never gave my parents grief: I was obedient, well-behaved, loving, and kind. So for some reason I thought I should have gotten what I wanted. I have struggled and been at times quite angry that I didn't get that family. I at times have felt like God was punishing me by giving me children with special needs. I have since come around and realized that all those feelings were "false beliefs" (something I think and believe in my head, but it just is downright false). 

One day I was crying on the phone to my sister about these very struggles and thoughts that I was just talking about. And she told me about a man that she had just met the other night at a dinner. He was an older gentleman who had several children (8 I think, I can't remember) and every one of them has some sort of special need or disability. He told her that yes life was challenging and difficult but every single one of his children was a blessing from God. He said that when he looks at his children he thinks of a scriptural story from the Bible. 

It is in John 9: 1 - 3 

1 And as Jesus passed by, he saw a man which was blind from his birth.

2 And his disciples asked him, saying, Master, who did sin, this man, or his parents, that he was born blind?

3 Jesus answered, Neither hath this man sinned, nor his parents: but that the works of God should be made manifest in him.

He said to my sister, we weren't given these children with special needs because we sinned, or as some kind of punishment. They have come here to earth so that the works of God could be made manifest through them.

When she told me that, it helped me so much. These children who come to this earth that are "different" are very special. They aren't easy all the time but they help so many people around them. I have sat and thought about it and I think that there are more children coming to this earth with special needs because this world is becoming such a ME world. And having all these kids with special needs almost forces people to think about and serve others who can't do everything for themselves. And THAT is a work of God. 

Here are 2 YouTube videos that demonstrate my point exactly. 

God isn't punishing me by giving me two special needs children. He has entrusted them to me and is giving me the privilege of seeing His works being manifest through my boys to all those who they come in contact with.

My little heroes

I always talk on this blog about my two children with special needs, because that is what this blog is about. However, there are two people that I hardly ever mention that are a HUGE part as to why I can get through the day most days and who are the silent heroes in my life.  They are Emma (10) and Jacob (8)...my older "normal" children.  

They are superstars as far as I am concerned. They are so loving and patient with their little brothers (they do get their moments of frustrations but they are amazing).  Emma tries to play with the boys or tries to help them calm down if they are having a meltdown and gives them lots of love.  Jacob is much bigger than his little brothers and could very easily beat them up or push them to the ground, but he is always so patient with them and when they hit him or push him around he just takes it and never retaliates. It amazes me how great these two kids are.  

Matthew "using" Emma as part of his play while she just keeps on patiently reading a book. 

There for Matthew when he needs help or a hug.

Not only are they amazing siblings but they are wonderful children for me and Eric. They are usually pretty obedient and good listeners, they are very helpful, and they are VERY patient and forgiving of us. We sometimes have a short fuse and we snap at them when they really didn't do much. We realize it and apologize for it and they always just wrap their arms around us and tell us that they love us and that we are the best parents ever.  They say sometimes, "it's okay mom we know that you've had a rough day with Matthew and Andrew." Such compassion and understanding is just so helpful and wonderful.

I really am truly blessed to have these two on my team!

Andrew and Jacob working on a pumpkin together.

Jacob being Matthew's "horse" around the house.

Playing together on the trampoline

Out in public! Yikes!

One of the hardest things to do with Andrew and Matthew is go out in public with them. If I can I try and avoid it. But at the same time I tell myself, "they need to learn sometime." So I usually try and go out in public with them with AT LEAST one other adult. 

I can't even tell you how many times I have gotten stares or looks when the boys have been loud, have hit, thrown a fit, or been uncontrollable. I often wonder: "What are they thinking?" or "They probably think I am a terrible parent and can't get my kid under control!" It makes me want to just leave everything and run home and hide...hide away from the world.

One recent experience: My mom and I were out shopping and we went to a "Subway" type shop inside the grocery store. I forgot Andrew's snacks and drink in the car so I left Andrew with my mom in line while I went out to the car. When I came back Andrew was in full fit mode: screaming, hitting, and arching his back trying to get free of the cart! I ran up and tried to calm him down, the result was getting hit several times. I eventually got him calmed down. But there were definitely people staring at us. When my mom bought her lunch he starting throwing a fit again and the cashier was sweet and said, "Oh he must be tired or hungry! Poor guy!" but I saw the person behind them and he didn't look as sympathetic. While we were eating my mom turned to me and said, "Wow! People really do stare don't they! This is hard." I just shrugged my shoulders and said, "yeah, I'm getting used to it." But we did acknowledge the nice cashier.

I was looking for a video for a different post that I am putting together and I found this one. It is from the What would you do? TV show. And it addresses just this very thing. It amazes me the reactions of the people. I'm glad that there is tolerance and acceptance out there. I don't always feel it, maybe it's in my head, or maybe it actually exists. 

Eric and I finally decided that we are going to start to live more and stop revolving our lives around not disrupting others around us. So we took the kids out to the movies to see Frozen. We thought this would be a great movie to go see and we thought they would love the big screen and everything. I came prepared with Andrew's favorite blanket, some snacks, and the iPad. The one thing I didn't realize that Andrew was going to want and we didn't have was POPCORN!  Looking back Eric or I should have just gotten up and gotten some, but we didn't. The lady in front of us had popcorn and when she was done and put it down on the seat next to her, there was no stopping Andrew from trying to get it. He wasn't bad and he didn't throw a fit, but he was relentless. It was kind of funny looking back but we decided that maybe we should wait a few more years to go to the movies with him. The lady who had the popcorn kept on looking back at Andrew and at us, but never said anything and we didn't either. But Matthew was perfect and LOVED the movie. The favorite thing about that movie was looking over at Matthew's face and seeing it light up and hearing his laugh!

Going out is definitely a struggle but we have learned a few things:  come prepared with toys, iPad, snacks, and special blankets, and to understand that the experience probably isn't going to be great or wonderful, but at least we are going out as a family. In time I have to believe that it will get better, probably never perfect, but better.