Giving up Your Dreams for Your Child when they are Diagnosed with Autism

It's one of the hardest things you'll ever hear. "Your son (or daughter) has Autism." In a flash you think of all the dreams you had for him growing up, playing baseball with his friends, going to college and succeeding in life. The doctor has just told you that your child may never talk, communicate or act like a normal child and in that moment it feels like all your dreams have been crashed against a wall and you've just lost your child.

I thought of those things when the doctor told me my son was autistic. I wanted to cry but then as we walked away from the doctor's office I looked down at my son and his small hand in mine. He was the same little boy that I knew yesterday. I loved him just as much.

I never gave up on those dreams but I had to push them aside and concentrate on the present. Focusing on those dreams too much at the time was too painful and wouldn't help very much anyway. I never wanted to lose those dreams for him and at the back of everything we did they were always there. There was always hope.

My son just applied for college and he is one of the very few in my family to do so. He has already achieved so much in his lifetime and his future is very bright. He's not perfect and he has his own issues but are any of us perfect and without issues?

In retrospect from everything we've been through I would say it's important not to give up your dreams for your child. If you have to, just push them aside for a while, focus on the present and don't focus on your dreams as much. Love them as you normally would. It's not the end of the world, there is so much more help and hope today then there was even ten years ago.

Our dreams for our children change as they grow anyway and at some point we will have to let them realize their own dreams and not ours.

Here's a nice video on Autism and Aspirations

Graduating from High School - wouldn't it be nice if we could graduate from Autism too

I just returned from one of the last meetings at my son's High School. He'll be graduating in June having made the honors or high honors every term since he started. Before the meeting I thought about pulling out the notebook and going through all the notes and questions I might have as I usually did, year after year at these meetings. Then I got a little fed up and said to myself - Why bother?

Many of the things I pointed out and asked for I repeated year after year and was always met with optimism and helpful suggestions ---- and no follow through. I don't know why the school(s) did not seem to understand that an autistic boy might need the actual steps towards making a friend broken down for him and rehearsed and practiced with goals such as approaching a possible friend to initiate a get together.

There were many other goals, amazingly met (as reported by the teachers) and achieved then repeated every year.

I can now say at the end of this high school experience that I am thoroughly disgusted with the school system for not understanding and working diligently with disabled kids that have a social disability. Worse than them not being able to help is the blatant lies and smiles and encouragement they give at every meeting. Did they ever intend to follow through or do they just lie on purpose?

Good luck too all the parents that have autistic kids in high school. I really feel for you. It sucks when our kids are so smart that they meet the educational requirements and the schools think they are doing great. My son could practically reiterate a text book of facts from his head when he was seven.

We need a separation of educational requirements with life skill requirements and they need to be held accountable to work on these with the child. At least if they had separate real goals for life skills their importance would not be lost when the school has met all their educational requirements and are patting themselves on the back.

I know there were a lot of great teachers my son had through the years and it is awesome that he has made it so far especially since they once told me that he may never talk or act like a normal kid. Like any Mom though I want the best for my son, and I know the school system is not doing their best. They are hiding behind red tape and budgets and not honestly do what needs to be done.

Distracted by Sounds - The Autistic Child

Did you ever hear someone scrape their finger nails across a chalk board and shudder from the sound? Can you imagine what it would be like if you not only heard that sound all the time but you had no idea what it was?

Many children on the Autism Spectrum have some sort of sensory integration dysfunction: meaning their brain is not processing what their senses are telling them correctly. If their auditory system is involved they may have an acute awareness to noises.

Sensory integration dysfunction is treatable with therapies and a sensory diet. Sometimes though some of the simple things we can do are forgotten and are not pointed out to us and they probably should be.

All babies come into this world with little knowledge of their surrounding. They learn as they grow through trial and error and also what we teach them. They learn that certain sounds mean something. For example footsteps in the hall could be mommy coming to get you and a rattle shaking is fun play time. Negative sounds also get understood like an alarm going off scares mommy and makes her jump in surprise or yelling makes everyone angry and sad. As they grow we identify many of these noises to our children such as a dog barking. The loud sound may scare a baby but a mom may not want her child to be afraid of dogs so she shows the baby the dog (if she knows it's friendly of course) and identifies the barking sound as coming from the dog. Then she pats the dog and allows the baby to touch it. Soon the baby is not afraid when he hears a dog barking anymore.

What do sounds mean to the young autistic child with auditory sensory dysfunction then, if they are not hearing them as we do? The sound of a dishwasher running might sound like a highway at a busy rush hour to them but we don't hear it that way so often we never identify the sound and it's meaning to the child.

I realized the importance of this after my son was diagnosed with Autism and was struggling with an overactive auditory system. At times he acted as if he was deaf, even though I knew he could hear, and in loud places like a grocery store he would scream. Sensory dysfunction was explained to me by his doctor and I was led to some therapists they thought could help. As we tried to puzzle through this I remembered when I had first noticed his acute awareness to sounds months before he was diagnosed.

He was around a year and a half and had been sleeping through the night since he was about two weeks old but suddenly he started waking at night crying almost inconsolably. Being a very easy baby this was not typical behavior for him. After many exhausting and frustrating nights of this I desperately looked around for a reason why he was waking up. The room was the same as always. As I held him and tried to rock him back to sleep I listened to rain outside. I was suddenly struck by how loud it sounded hitting the roof right above his converted attic bedroom. Spring was coming fast upon us and it had been raining off and on for days. Before that the cold of winter had given us many months of quiet nights. It had not rained since the last fall, before we had moved to our new apartment.

With that in mind, I bundled up my son went down stairs and took him outside on the porch. He was still sobbing quietly on my shoulder. "It's raining" I told him "look at the rain" I said and held my hand out into the stream of water coming from the sky. I had gotten his attention enough to look. I talked to him softly about the rain in easy words I knew he would understand and held his hand out into the water. He was fascinated and turned his hand over and over. He had stopped crying.

We watched quietly for a while until he was sleepy again and I took him back to his room. When we got there I parted the curtains and showed him the rain outside. "It's raining" I said again and pointed to the rain. He looked and seemed to understand. "The rain is loud on the roof" I said, placing my hand on the angled ceiling. He looked up at the ceiling and back outside at the rain.

I put him back in his crib under his blanket. When I checked on him ten minutes later he was fast asleep. The next few nights when it started to rain he let out a small cry, I reassured him and told him about the rain and he went right back to sleep. After that he never woke up again crying in the night.

It was only a few months later that he was diagnosed with Autism. Over the next few years as we tried to understand sensory dysfunction, I never forgot that night in the rain. I also remembered the lesson learned that night; that loud noises can be scary and giving a name to the cause of the scary noise makes it easier for him to understand and makes it not so scary anymore.

What does your child hear? Are you hearing things the same way as him? Have you tried finding the source of sounds and giving them names and talking about sound levels. This is something that we do naturally with our children to sounds that we understand. With the child with Sensory Integration dysfunction we must first understand what they are hearing and then go back to our natural instincts and explain the noise to them and comfort them the best we can.

If you have never done it, the next time you find your child distracted by sound, try giving it a name and talking about the noise level, being open to how loud it may sound to him. Try stopping the noise and starting it again. Be aware of how much noise is in his environment. Is it really necessary to run every machine in the house at the same time?

As my son grew I talked to him about noise in general. When I heard a loud noise like thunder I would put my hand over my ears and say it's loud and encouraged him to identify when something was loud to him. I actively sought out all sources of noise in the house. At one point I made a startling discovery that I was running five machines (washer,dryer,sink, TV, and blender) in the house at the same time while the neighbor was revving his motorcycle outside the window without mercy. It's amazing how noisy we are without realizing it, because it doesn't matter to us.

Children on the Autism Spectrum that have Sensory Integration Dysfunction may not hear, see or even feel the same way that we do. This makes it more challenging for us to foster a young child's development. They may need sensory integration training but we may also need to be retrained to open our ears, eyes and senses to see the world through their prospective. Just think about those nails being scraped across the chalk board without explanation. Wouldn't you want someone to help you understand what that awful noise was and what it meant?

Winter Connections

Living in the North Eastern state of NH we enjoy some hardy winters. We're graced with a snowy landscape and crisp cold winter breezes for several months out of the year. Winter is a classic time for children to pull out their snowsuits, hats and mittens and get together to enjoy fun activities like sledding, snowball fights and building snowmen and forts. How does this effect the autistic child that has so much difficulty communicating and playing with other kids? For my son being able to enjoy seasonal activities started by making connections with his world to the outside world.

When my son was 2 and recently diagnosed I had no idea how to break into his world and bring him out into ours. I sat beside him and imitated his repetitive motions with his cars. I quickly found out that he would squeal when I was doing it wrong. He was allowing me to participate in his activity according to his rules but I wanted him to expand and open up his world. I got an Idea.

I found toy cars that were copies of popular cars on the road back then. After Zach accepted them into his inventory I took him for walks in the carriage along busy streets and through parking lots. His cars were in a box on his lap. When we came across cars he carried I pointed them out and made the usual repetitive car noises he made. His eyes opened up in surprise and fascination and he pointed to them and held out the matching toy car.

Next, at home I introduced a set of small plastic realistic looking farm animals to him. I interwove them in his line of cars. At first he objected as I expected. I moved them along making the same car motions and noises that he made. After a while he accepted them.

When he was very familiar with them as 'his' toys I gathered a collection of pictures and picture books with animals that looked like them. At night before bed and at other times I showed him the pictures and matched them with the toys. He became very good at matching them and picking the right ones out. I started making the animals sound in the repetitive way he liked to make sounds as he handled each animal.

When I picked up the newspaper one day and read an announcement of the start of the local fair I saw a great opportunity. I bundled up my son and took him and his toy animals to the fair.

When we walked into the cow barn one of the cows let out a great mooooo. My son was so surprised he climbed out the carriage and held out the toy cow toward the real cow and made mumbled noises that I understood as his way of telling me to look. I talked to him and we made the cow noises that he was familiar with. I did try to get him to touch the cow but that was a little too much for him at the moment.

We walked slowly through the barns and I let my son match his toys with the real animals. On that day his world had really opened up for him.

We returned to the fair several times taking his sisters along with us. He seemed to think of the real animals as 'his' animals and when he saw his sisters petting them he objected. Of course I wouldn't tell them to stop petting the animals and I encouraged him to. He finally reached out his hand to one cow and ran his finger along the hair ends so lightly you would think he wasn't even touching them, but you could tell by the look on his face that he was.

With time, lots of visits to barns and modeling from his sisters he started to pet them and enjoy our trips away from home. In the petting zoos he would mix in with the other kids, pet the animals and watched what they did and how they moved. I also gave him simple books and movies about animals which he finally took an interest in.

What does all this have to do with winter and connections?

Everything.

When the yard became buried in snow we went outside and found a spot to play, bringing his treasured toys along. We made bridges and little snow forts for the cars and animals to go through. I got one of his sisters to cooperate and had her play along side him with his toys in his way. Then I gave his sisters similar toys and let them play nearby (but not too close) in their own way. It caught his attention. Later I found him modeling some of the things he saw his sisters do with the toys.

After a while they started to play together with out him objecting that his sisters weren't following his rules.

One of the things the girls like to do, and later Zach, was to slide the animals down little snow hills. The girls would squeal like it was them sliding down the hills. What do you think happened when I brought some sleds home? He would slide the animals down the big hills with the sled.

When he saw his sisters sliding down the hills on the sleds. He hopped on one, as if he had done it a million times, and slid down the hill. Sledding became one of his favorite activities.

All of this started with a line of cars that he moved along with repetitive motions and noises. Simple connections and some help with modeling from other children brought my son into the outside world and had him playing alongside and at times with other children.

Getting autistic children to enjoy winter may be as simple as making connections with their world and bringing it outside.






How do you handle the winter with your autistic child? Leave your comments and your suggestions.