an autism journey

Archive for the ‘Day to Day Living’ Category

FAITH

I remember when my son was first diagnosed with autism. It was hard to hear the word autism. There were so many decisions to make. Choosing therapies, education options, considering diets, programs, devices…… But there was hope at that point. I truly believed that his diagnosis gave us the power we needed to now move on head first into helping my son. I believed if we just found the right “fit,” for him, figured out how he best learned, figured out what he needed, we could and we would indeed conquer this. I believed whole heartedly that with the right amount of faith, prayer, and good old fashioned love, my son would be just fine. He would talk. He would grow. He would learn. He would overcome, and one day we would look back and say, “wow! Look what God has done for him!” I was so not prepared for what lied ahead.

I have worn out my knees in prayer over the last several years, holding steady to my faith. I believed in the power of prayer, in the power of God, in the power of healing. My son was going to be fine, my marriage was going to be fine, my family would be fine. This was just a bump in the road for us. While my faith was indeed strong, I had a complete misunderstanding of what faith truly was about and that misunderstanding has led to additional unnecessary pain.

As Christians we learn early on about the importance of faith. After all, the Bible tells us the faith as tiny as a mustard seed can move mountains. We are taught that if we just have enough faith, God will answer our prayers. I truly believed that faith meant believing and expecting God to heal my son. The problem with that idea (although it is certainly true that God often does heal and answer many prayers) is that by that reasoning, an unanswered prayer, or at least not the answer we are looking for, leaves us wondering, “is my faith not strong enough or does God not care?” Not only do we then begin to doubt ourselves, we are far too often judged by other well intentioned, yet misguided Christians, who think it is their responsibility to let us know that we should just “pray harder.”

My son is now 11, and nothing has gotten any easier. He is still considered “low verbal.” He speech is mostly limited to 2-4 word requests. “I want juice, I need blanket.” Not only has my son not been healed, but his challenges have increased. We now have the addition of panic attacks and severe anxiety. It is difficult to go anywhere at this point. Even getting him into the car can be a challenge. He bolts, he wanders, he bangs his head. He is much bigger now, and stronger, and faster, and much harder to manage. We are at the most difficult place we have ever been in our autism journey.

Which has lead me to question my faith, question my beliefs, question why God is not doing something, ANYTHING, in all this. It has led me to a sometimes deep, dark, and lonely place that can be hard to get out of. It has however, led to me a new understanding of what faith is, of what it truly means to trust in God.

It is easy to trust and believe when you think things are going to get easier, better. When my daughter asks me for something (that is within my power to give), it doesn’t require faith. She has learned over the years that she asks, she gets. Period. It is something she has experienced over and over, and come to expect. We often go to God with that same expectation. I ask, He gives, and many times he does. But that is not really some great act of faith, it is just something we have learned through experience.

What I am coming to finally learn, is faith, real faith, goes far beyond expecting the answer to our prayers. Faith is believing God loves us. Believing He is always by our side, guiding us. Believing in his power and his strength to get through anything that comes our way. Faith is believing God has the power to answer our prayer, but trusting Him enough to know that if He doesn’t give us the answer we seek, He is still a good and merciful, loving God. That is faith.

I am learning it takes faith to believe God CAN heal my son, but it takes a greater, deeper faith, to accept if He doesn’t. That if we must walk through the fire, we will not be alone.

It has not been an easy lesson. It is one that I must adjust to daily, but it is making me stronger. God loves me. He loves my son. He loves my family. And if we hold onto that, we can not only withstand any storm, we can thrive in it.

My Wish For Autism Awareness Day

 

I truly believe that autism is one of the most misunderstood and highly controversial conditions of our time. If you don’t believe me, ask the person beside you what they think of autism. I guarantee they will have an opinion. It probably won’t be the correct one, but they will have an opinion on the cause, the cure, and what parents should be doing about it.

Our children are being starred at, made fun of, and ignored. They are treated as anything but equal. As parents we have to fight for them daily. Even among other autism parents, we are not always understood. Autism is a wide spectrum. Some kids are high functioning and will go on to lead a fairly typical life. Others are severe and may never speak and many will need constant care.

I could spend the day trying to spread awareness…. I could explain for the millionth time what autism is and why the world should care, but the reality is, I am too tired and too busy LIVING autism. So, on this World Autism Awareness Day, instead of spreading awareness, I have a wish, a wish for every parent out there living autism.

I wish for just one day of peace. One day of knowing our children are safe and healthy and well. One day of our children not being bullied, teased, and made fun of. One day of our children being accepted by their peers. One day of our children being included. One day without stares. One day without judgement and criticism. One day without having to fight for what others take for granted. One day of not having to worry. One day of knowing our children will be ok. One day of a good night’s sleep. One day of help. One day of calm. One day of kindness. One day of love. Because, maybe just maybe, if we could have one day of our children being loved and appreciated for who they are…. One day of others seeing our children as we see them…. Then maybe one day can turn into two, and then a week, a month, a year….. and maybe eventually a lifetime of not just awareness but acceptance. That is my wish. Oh…. and I wish for a whole lot of chocolate in the meantime.

 

Living Life as a Superhero

Due to autism, my son’s speech is limited, mostly requesting things he wants or needs. However, as his language continues to progress, we hear the occasional comment. It usually comes out of nowhere and surprises us, amazes us, sometimes makes up stop and think, and always makes us sit up and listen.

Today as we were walking back from church, he matter of factly says to me, “I am a superhero!” That was it, no other words, no actions, no play involved, just the words, “I am a superhero!”

I am pretty sure he really is.

Imagine living life knowing what you want to say, but not being able to express it. Imagine if you are sick, but can’t tell anyone. Imagine having a fear you can’t talk about it. Imagine the questions you would want answered, but can’t ask. Imagine if your entire sensory processing system didn’t work properly, the world is always too loud, too bright, too stimulating, too confusing. Imagine not being able to zip your jacket, or button you shirt; not because you don’t know how, but because there is a disconnect between what you want to happen and what your body will allow. Imagine being made fun of for what you have no control over. Imagine people ignoring you, talking about you. Imagine being frightened, lonely, hurting, wanting to give up.

I am pretty sure that is how the world feels to my son: overwhelming, scary, too hard. The thing is, instead of giving up, instead of becoming angry, instead of listening to all the negative, he carries on. He presses forward, he learns, he adapts, he grows. He takes the impossible and makes it happen. Isn’t that what a superhero does? They have unimaginable problems in everyday life, they have people who don’t believe in them, the odds are stacked against them, but somehow they still manage to do something amazing, and in the process, change the world around them…. A little bit at a time.

That describes my son exactly. When the speech therapist said he would never speak in sentences, he did it anyway. When the so called experts said not to bother teaching him to read, he learned to read anyway. When the other kids said, “he can’t do that,” he showed them he could. He is accomplishing the impossible. He is doing something amazing. He is changing the world a little bit at a time.

Yes, my dear son, you are indeed a superhero.

RESPECT

April is autism awareness month. You might wonder why we need an entire month dedicated to awareness of autism. It is because of comments like what my son had to hear today while playing games with a group of children, “Don’t pick him! He can’t play! He has autism!” It wasn’t whispered quietly in hushed tones, it was said out loud for all in the room to hear, including my son. I can’t help but wonder if those words are spoken so boldly for even his mother to hear, what kind of things are said when there is not someone around to stick up for him. It still stings just thinking about those words coming out of the mouth of another child towards my son.

We need so much more than a simple awareness of what autism is. We need  awareness that EVERYONE deserves to be respected and treated like a human being. It is often difficult for my son to understand the complex rules of social interaction. It is difficult for him to understand what is expected of him in group situations, and it is often hard for him physically to make his body work in the way he would like to be able to play group games such as kickball, baseball, or even tag. He does however desperately want to be included and given the chance to do the best he can. He wants to have friends, he wants to play, and learn, and be accepted like everyone else. NOBODY wants to be left out or treated as if they are less than others.

What do I want for autism awareness month? I want every parent to take just a couple of minutes of their time to teach their children exactly what I just said. That it is never ok to hurt someone’s feelings and that autism or not, every child should be treated with respect and dignity. That and only that is what will make a difference in how my son and countless others like him are treated.

Coloring Outside the Lines

The other day, my son was in a group situation coloring a picture, when one of the other kids said to me “He is not coloring that right. He is just scribbling all over it.” My heart broke. I knew the child wasn’t trying to be malicious. He had simply been taught at some point in time that the “right” way to color a picture was to stay perfectly in the lines, to make it look like everyone else’s. He was just stating what he thought was a fact.

The thing is, the boy did not know how hard it was for my son to simply to sit at that table and focus without rocking back and forth or stimming on the crayon, he didn’t know how hard my son had worked for years to even be able to correctly hold that crayon, or how hard it was for him to verbally ask for a color he wanted. To me, that picture he had been creating was beautiful, because I knew how special it was for my son to be doing what he was doing. But to the other child, it was just scribbles. My son does not have very good communication skills.His receptive skills, his understanding of what others say, however is quite good. He stopped coloring when the child said that and simply looked at his picture with a sad expression and put his crayon down.

I told my son how beautiful I thought his picture was and I told both him and the other child that there is no wrong or right way to color a picture. That is what makes it art, that we each can do it differently and it still be beautiful, but the comments of mine were no match for what my son had already heard.

Words are powerful. They can build someone up or completely tear someone down in less than a moment’s time. I can’t help but wonder how many artists are told in their lifetime that they aren’t doing it the right way. What a boring world it would be if they all listened. Truly life in general is a lot like that, particularly for my son. He may live his life a bit differently than others, but that does not make it any less beautiful. Sadly, I am pretty sure he will continue to hear from those who don’t know better that “he is not doing it the right way.” But, as his mother, I will continue to tell him that it is just as beautiful (if not more)  to color (and live) outside the lines, to hold his head up high, and show the beauty his has to share. Here’s hoping the rest of the world soon learns that lesson too.

Toys for Teaching Independent Play

It can be hard for kids with autism to learn how to play appropriately and independently with toys.  My son does best with toys that have a set beginning and end. Things like puzzles are great, but it has been a struggle to find other toys beyond that. Below is my top ten list for what has worked for us.

To teach independent skills, I use ABA techniques (thanks to his therapist for teaching me) and begin by breaking it down into small steps that he can have success with. For instance with puzzles, I might have him start by just putting 2 or 3 pieces together or by completing all but the last 2 or 3 pieces for him. Each time he does so, he is rewarded with a small treat (motivation is always key to learning).  After he masters that step (it might take a number of days to do so), I then continue to add a piece until he can independently do the entire puzzle himself. Be patient. It is very important to teach this skill in small enough steps to guarantee success so as not to frustrate the child. Each of the following toys can be taught using this method (use a hand over hand approach helping the child early on if necessary).

1) Melissa and Doug Pretend Pizza Party: This wooden set is sturdy enough to stand up to even the roughest of play. I started by just having my son put on the pizza toppings to an already put together pizza. After he mastered that, we moved on to putting the pizza pieces together just a couple at a time, and eventually he learned to put together the entire set himself. This is now one of his favorite toys. We just recently purchased the very similar Triple Layer Birthday Cake Set.

2) Mister Potato Head: This classic toy works perfectly for teaching independent play. If need be, start with just one piece at a time until that is mastered and work up. This toy also works well for teaching body parts as well as requesting for pieces (verbally, with a device, or with PECS).

3) Fantacolor Junior: This design board comes with 16 pictures (8 double sided boards). The picture is laid under the plastic to which large chunky plastic pegs are placed into holes matching up colors. A very simple, but fun toy to help with colors and creativity, as well as fine motor skills while teaching independent play.

4)Get a Grip on Patterns (Shaked Ed. Games) My personal favorite for independent play. This plastic grip board comes with 12 different designs that can be overlayed onto the board. Small clothespin type pegs are then placed onto the pattern. Great for working on fine motor skills (required to pinch and attach the pegs), colors, and patterns.

5) Lace up Cards: There are many types to choose from. I personally like the Melissa and Doug brand. They are cute, colorful, and very sturdy (essential for us).  Again, this can be catered to your child’s ability. You can begin by having the card all laced up except for the last  few holes if necessary and build from there.

6) Sort n Shape games: I like the one from Orda Industries, but there are many you can choose from. Pick one that comes with picture cards to show the pattern to imitate. The child then simply follows the pattern to place the correct shapes, colors, ect.

7) Perfection: This classic game works well as a more advance shape sorter toy. We use the game without turning on the timer. (This game will require supervision for those children who might put the small pieces into their mouths).

8) Lego Building sets: We like the Duplo sets since the pieces are bigger to handle and less likely to be placed in the mouth. We start out with just a couple of pieces and work our way up to a specific design (be sure to provide a visual picture of the desired design). We work on the same exact pattern/design until it is mastered, rather than just randomly building blocks.

9) Melissa and Doug Farm Blocks Play Set:  We like this particular set, but again, there are many others to choose from. I like this farm set, because it requires the building of the set along with the play of the animals. For us, we just work on building one particular piece at a time, wait until that is mastered, move on to another part of the farm, and finally teach the placement of the animals into the play set. I  placed small Velcro dots onto each piece so that they would stay together and not be knocked down with a minor bump. Trust me, this cuts way down on the frustration level.

10) Guidecraft Sort and Match Construction Trucks (or Flower Garden): Sturdy magnetic pieces attach to the color and shape guided pictures to form a truck (or flower). This toy is great for working on many skills at the same time.

Let your child’s interests guide you in what toys to teach with. Be sure to reward your child for each successful step along the way.

Christmas is coming…

My son is impacted severely by autism. He has very limited verbal skills, limited mostly to one word requests and some scripting (repeating words and phrases from things he hears).  The words he does say are often soft and sometimes difficult to understand, but if you listen closely, you will probably hear him in almost a whisper saying, “Christmas is coming…. Christmas is coming.”

He is looking forward to it. We have a calendar that we are using to count down the days. His celebration of the day, however, is often misunderstood by many. It is wrongly interpreted as disinterest or a lack of understanding about the meaning of the day. Those critics could not be more wrong. It is true that he doesn’t celebrate in what has become known as typical, but make no mistake he understands it better than most.

My son doesn’t make a Christmas list. As a matter of fact, he doesn’t ask for a single gift. It isn’t because he can’t…. he often asks for toys at home, or while out shopping in the store. He makes his wants known. He simply doesn’t see Christmas as a time of asking for anything. “Christmas is coming….”

He isn’t too big on all the decorations. He doesn’t like changes to his environment and Christmas decorations are no exception. He certainly enjoys the Christmas tree with all the ornaments that he can pull off one by one, but the rest of the decorations,  he would prefer stay in the box they came from. “Christmas is coming….”

He doesn’t care for a lot of the Christmas carols and usually asks for the radio to be turned off.  If we try singing things like Rudolph or Frosty, he just looks at us like we are crazy. What he does want to sing? Happy Birthday to Jesus. “Christmas is coming…”

He doesn’t like crowds, so shopping is out. So are the Christmas parties. He prefers to have a quiet Christmas Eve helping to bake and decorate a birthday cake for Jesus, complete with candles (which he takes the liberty of blowing out himself).  “Christmas is coming…”

We have stopped trying to read him books about Santa. He has no interest in them. He would rather play with his plastic nativity set while someone tells him about the birth of a special baby. “Chirstmas is coming…”

As for Christmas morning, he will be excited to get up and sit at the tree. The small treats in his stocking will probably be what he enjoys the most. He will take his time, pulling them out one by one and stop to sample each before moving on. He will be quite content after opening one or two presents to simply enjoy what he already has rather than looking for more to open. “Christmas is coming…”

He will turn down the big holiday dinner opting to enjoy something simple like a frozen pizza or even a pop tart instead. He doesn’t need anything fancy. He will be pleased all the same. “Christmas is coming…”

Many people will probably say that my son’s reaction is not normal. They will be right, it is not normal compared to what we have turned modern day Christmas into, but I can’t help but think that my son may be behaving more like those shepherds keeping watch in the fields so many years ago. They were honored to have been the first witnesses of the glorious event surrounding the first Christmas. They were chosen not because they had a special place in society, they were not religious leaders or wealthy individuals. They were probably chosen because they were humble, they were faithful, and they were willing to recognize the importance of the event that was unfolding. “Christmas is coming…”

 There were no fancy decorations. Perhaps they were instead awed by the lights surrounding  the glorious beings from heaven. There were no Christmas carols about reindeer, only the voices of the angels singing praise welcoming the birth of a king. There were no special meals that day, no shopping for gifts, no parties. There was no man in a red suit, only a baby in a manger. The only presents that were sought after was to be in the presence of a Savior. They were there simply to worship the one they knew would save them. That was more than enough for them, and it appears to be more than enough for my son. He is setting the standard for a new norm at my house. “Christmas is coming…”

“And there were shepherds living out in the fields nearby, keeping watch over their flocks at night. An angel of the Lord appeared to them, and the glory of the Lord shone around them, and they were terrified. But the angle said to them, “Do not be afraid, I bring you good news of great joy that will be for all the people. Today in the town of David a Savior has been born to you; he is Christ the Lord. This will be a sign to you: You will find a baby wrapped in cloths and lying in a manger.” Suddenly a great company of the heavenly host appeared with the angel, praising God and saying, “Glory to God in the highest , and on earth peace to men on whom his favor rests.” When the angels had left them and gone into heaven, the shepherds said to one another, “Let’s go to Bethlehem and see this thing that has happened, which the Lord has told us about.” So, they hurried off and found Mary and Joseph, and the baby, who was lying in the manger. When they had seen him, they spread the word concerning what had been told them about this child, and all who heard it were amazed at what the shepherds said to them. But Mary treasured up all these things and pondered them in her heart. The shepherds returned, glorifying and praising God for all the things they had heard and seen, which were just as they had been told.”

Luke 2:8-20 NIV

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