Age is just a number in autism land.

Realizing all of the progress the boys have made is a great feeling. Seeing how far they have come and how much they have overcome keeps me going on the bad days. They have overcome so much that sometimes I forget that there is still much to work on. Yesterday was one of those days where I messed up,  a kick in the gut that made me feel like a horrible mother.

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Beginning of the month shopping trip needed to happen. Add into that, River’s birthday is tomorrow and I had to go get stuff for that. So without thinking about it I packed Eph up into the car and told River I wouldn’t be gone long. He was immersed in his computer game and seemed good to go. So at 12:30 PM I pulled out of the driveway.

We live a bit rural. We are 30 minutes from town and an hour from Vancouver. All the shops I wanted to go to were in Vancouver. So We headed down I-5 and hit our first stop, the Ocean King seafood market. That took about 15 minutes then we headed down the road to Gamestop. We were there about 30 minutes. So it is now about 2:30 and the phone rings. River wants to make some lunch and I give him the go ahead, let him know what he can have and that I am not quite halfway through the shopping trip.

Our next stop is Costco. This trip was about an hour, the store wasn’t packed so we got in and out easy and headed off to Winco. At this point I am tired and Eph is tired so we hurry through and are out of there in 20 minutes. Now it is about  4:45 and we are heading back north.

Have you enjoyed my itinerary so far?

The point is, this wasn’t a long trip for all that I needed to get done. For a Saturday, things were smooth in all the stores. I thank the amazing weather and the free fishing weekend keeping people out of the shops.

Halfway home my phone beeps letting me know I have new voice mail. OK I missed a call, no big deal I will check it when I get home. The cell service on the way to my house is spotty. It worsens the closer to where I live and then goes out completely. I live Rural remember. another 5 miles and another voicemail beep.  Odd, my cell doesn’t get that many calls. Another 5 miles and the phone rings. I am not at a point I can pull off the road but I notice it is the home phone and so I try and answer. It is garbled and disconnects. I try and pull off to call him back but there is no service. I am about 15 minutes from the house, so I decide to just push it home.

I got a pit in my stomach. This is actually the longest he has been home alone. Normally I do the shopping with him in tow or while he is at school. I assume the voice mails are him and since he called I am certain he isn’t in grave peril, but I am realizing he is upset. That pit in my stomach grows as the minutes tick by. When I pull into the driveway my phone links up to the house WiFi and I get a text, voice mail beep and Facebook ping all at once so I know River called grandma.

I get in the door and he is in tears. He just says you scared me and goes out to unload the groceries from the car. He won’t really talk to me as he brings items in from the trunk. He says you were gone a long time and you didn’t answer the phone. I feel like a horrible mom for multiple reasons.

I scared my baby. I made him feel frightened and alone. I forgot for a moment.

I forgot that his age doesn’t equal his independence level.

I forgot that his age doesn’t mean he doesn’t get scared.

I forgot that he has never been alone more then 2 hours.

I forgot how easily the anxiety can ramp up in him.

I forgot that all of his growth doesn’t take away the autism.

I scared my child. I scared him to panic and tears. He thought we had crashed the car. He didn’t know if we were coming home.

He remembered to call his grandma in the event he cant reach me and that is great. He shouldn’t have had to do that though. So no more long trips into town without him. No more forgetting how much he needs me. I feel like a horrible parent for the pain, fear and tears on my sons face yesterday.

River will be 18 in the morning. That doesn’t mean he is grown. That doesn’t mean he is ready to be treated like an adult. How could I forget and scare my baby like that.

It sucks how guilt can punch you so hard in the heart sometimes.

Always Love,

Domi

 

You can learn more about us and what we are doing at

https://www.facebook.com/Riosdreams

donations can be made at:

http://www.youcaring.com/other/building-blocks-for-birthday-dreams/151773

and purchases can be made at:

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The Chicken Chick

 

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Asperger’s and violent behavior

Recently there has been talk and speculation linking some very serious and horrifying acts of some young men, with asperger’s. I do not know those boys. I cannot speculate on if they were struggling with ASD or not. I also will not name them, you probably already know who they are, I will not add to the fame they have achieved through these violent acts. I can however talk about my experience with boys with asperger’s/autism and why all of the speculation terrifies me.

Telling the world that asperger’s and autism cause violence is wrong. Giving people the idea that they should fear our children. Children who are statistically shown to be more likely to be a victim then a perpetrator. Though it may be true that young children with ASD show violent behavior assuming that means they will grow up to be violent offenders is wrong. I have known NT children who throw some pretty epic violent tantrums, no one assumes they will be a danger to society. Why do you assume that a child like mine will be.

When River was in the worst of his battle we had only just gotten the diagnosis of asperger’s. At 8 years old he was brilliant, withdrawn, occasionally violent, scared and sometimes very scary. I didn’t understand it all then. All I knew was I had to help my baby come out of the dark place he was in.

When life got too hard for him, River reacted violently. Daily, I would have to restrain him. Literally wrapping my whole body around his little body and hold on for dear life. I would always get my arms around his torso and pull him backwards until I was up against a wall. I could slide down the wall into a sitting position and wrap my legs around his and just hold him as tight as I could. He would thrash and scream and bite and pinch and scratch. He would say terrible things and I would just hold him tighter and try to talk to him calmly and tell him I loved him and that it was going to be ok. I would cry sometimes and sometimes I would scream right along with him. But I never let him go. I never let that darkness swallow him. He always came out of it.

From the time he was little holding him tight calmed him. Wrapping a blanket tight around him and putting a leg over his leg and my arm across his chest was how I got him to nap or sleep. I never held him too tight. I never hurt him. I wrapped myself around him and eventually his breathing would match the slow pace of mine. As life progressed and I learned more about ASD, I learned that the pressure and weight on the body often has a calming effect. Holding my baby became the only way to reach him when life overwhelmed him.

For a child with ASD, sensory overload is often a trigger into a very dark place. It can happen anywhere and is sometimes easy to anticipate and sometimes  out of the blue. The everyday stimuli that NT people walk through with ease are an assault on a child with ASD. I have watched both of my children fight that war. Constant beatings from the noise and the lights and the smells. The way the tag on his shirt keeps scratching his neck, the way the seam of his pants rubs against his calf. Such minor annoyances that an NT body would adjust to and ignore after a few minutes become the slushy flakes of snow piling on the unstable side of a mountain in spring.

Can you imagine spending your whole day being screamed at and scratched and blinded while someone follows you around with a freshly sliced onion. Now ratchet that up times 100. This is how I associate to the excess sensory stimulation my boys have lived with.

It is hard for me to figure out how I could handle doing anything but scream.I know when I have had enough noise and need some quiet time I get pretty cranky. I don’t have trouble processing sensory stimuli though.

This over stimulation was pretty much always the cause of River’s extreme outbursts. He would get to a point where it was just too much. So he would hit me and I would hold him. He would scream and I would whisper. He would thrash and I would rock him. He would calm and we would cry. He would tell me how sorry he was that he hurt me. He would tell me he couldn’t remember it all. He would tell me how much he hates to feel that way. We would lay on the floor, me and my beautiful 8-year-old boy, the little boy who saved my life, and I would tell myself over and over again that I would not stop until we found a way through this.

After the screaming was over and the crying had stopped, that was when the work started. We spent years with therapists at Easter seals. Teaching us to see the signs. Giving us coping tools and a better understanding of what to avoid before the meltdown. Many meltdowns earned River consequences. Not because he got in trouble for falling apart, but because this was how he had to face and learn about what he was doing that could have kept him from having those meltdowns.

With time he learned. River has grown into an amazing young man. Yes he is still struggling. He doesn’t understand the world but, he has gotten to where he pretty much understands himself. When River has had enough, he can sit and calm himself. He can handle the excess noise and will put on his headphones to drown it out. He can handle the crowds, the smells and the heat. If you saw him wandering around somewhere you would not see his struggle.

Asperger’s still keeps him on his toes. He still has trouble talking with people and he may not want to be around a big group. When he has had enough he will let me know and that is good. River has become very nurturing. He hangs out with and is protective of young kids. He lately has really been bonding with a little girl who is living the struggle of ASD everyday and he seems to have a calming effect on her (more on that in another post). He is calm and kind would never hurt another person.

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River and his charge (they are bonding in a way that is good for both of them)

I am not saying the way I raised him is THE RIGHT WAY to raise a child with ASD. It was our right way. We grew together and learned alot and go to a really good place.

River is actually a pretty good picture of what a young man with AS is like. I have met quite a few.  A large part of who they become depends on the same basics that guide every childs development.

Have they been loved?

Have they been nurtured?

Do they have a stable support system?

Are they being taught wrong from right?

Do they have consequences?

Are they loved? (Yes being loved is important enough to mention twice.)

Without those basic needs being filled any child can become a monster.

Lastly, please stop lumping ASD’s in with mental illness. Autism is a neurological disorder. There is no little pill to manage it. It is just a brain that works differently. Yes there are underlying medical conditions. These need to be addressed.  Yes sometimes therapies can make a big difference in their lives. Our children are not mentally ill though. Many of the people who have committed these atrocities are mentally ill. That needs to be addressed in our country. Shifting the blame to a disorder that isn’t understood in the community at large only incites fear in the ignorant. Please learn about ASD.

Always Love,

Domi

 

You can learn more about us and what we are doing at

https://www.facebook.com/Riosdreams

donations can be made at:

http://www.youcaring.com/other/building-blocks-for-birthday-dreams/151773

and purchases can be made at:

https://www.etsy.com/shop/RiosBdayDreams

The Chicken Chick

How a cat changed my sons world.

Animals have shown they are good for people’s health. They can increase exercise, lower blood pressure and just make us happy. They also seem to have a very positive effect on children with autism. There have been studies that show a pet can help an autistic child learn to bond with more than just the animal. we have experienced a similar effect.

We have always had pets. I really can’t remember a time when we didn’t have animals. Most of my life we had them. All sorts from cats to horses. I have always loved animals and daydreamed about one day having a farm full of them. Not that I wanted to be a farmer back then because I hated living rural. I always wanted my farm in the middle of a large city. Silly yes, but  kids think of silly things.

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So my boys have always had pets. They haven’t had the same upbringing as me so their pets have ranged from goldfish to cats and we have usually had a dog. No matter what we do or where we are an animal is usually in the mix.

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So by the time River turned 5 we had random cats around and had found this lovely chow/malamute mix Sydney (best dog ever who we said goodbye to last year 😥 ) and River was always cool with them. He had his own cat but never really paid it much attention. River was more into building things and watching Sonic the Hedgehog or Pokemon related things.

When River was 5, we had a fire in our apartment. Luckily we were out at a friends that night and our dog was with us. See our stove at the time had push button controls on the front edge of it. A cat jumped up on the stove and turned an eye on. The eye got hot and caught the wall on fire and the kitchen was a goner.

A neighbor noticed the smoke coming through a wall vent and called 911. The fire was contained to the kitchen but soot and smoke covered everything in the house and sadly our 3 kitties at that time didn’t survive the smoke. We lost some of our stuff but we were ok, so that is what mattered.

River was mostly unfazed by the whole thing except for his worry about the cats. I was so heartbroken and stressed about what had happened I decided to lie to him. I told him that the cats had gotten out and were scared so they ran off. I told him someone had probably taken them home to be with new families. And he was fine with that until a redcross worker we were talking to said they had seen a story about it in the paper. I wasn’t aware it had been in the paper. He said “so you were the fire in the kitchen that killed 3 cats, right?” At which point River lost it and learned mommy had lied. That was not a great moment but we got through it.

3 years later, River is 8 and I am very pregnant with his little brother. My best friend at the time had a very pregnant cat. River would tell us every day that when she had her kittens he wanted the all black one. This cat was a whitish/gray almost Siamese looking cat. I told him sure if it had an all b lack kitten he could have it. So the day before I have Ephraim, the cat has kittens and sure enough one is completely black, not a touch of white on her.

Kairi

Enter Kairi, the sleekest smartest black cat ever. We did not get along most of the time. She could care less about people. She wanted to lounge when and where she chose, and you better get out of the way. She was the Queen. River adored her and oddly, she adored River. She would stay with him pretty much all day. She slept at the foot of his bed. She lounged on the couch with him as he played video games. And it was his job to take care of her completely.

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River never wavered in his care. He cleaned her box. He kept her food and water full. He loved on her all the time. He would be doing school work on the computer and he left hand would be petting the cat sitting on the floor next to his chair. They were an amazing pair.

And she changed him. 8 was the roughest year for River. He was violent and out of control. He could not tolerate the world. Everything had to be routine and safe. We didn’t leave the house much and when we did it had to be scheduled and it had to be a familiar safe place. Honestly, I was scared about bringing a baby into the chaos that was our life.

Rio and sky on the way home0001

When Ephraim and I came home from the hospital, it was a new experience and River tolerated it. He actually took to Ephraim straight off. He doted on him and would help me take care of him. Bringing me diapers and blankets and watching everything I did. Ephraim was sick from birth and River tried to be very helpful. I know sometimes it was hard on him especially when Eph had to have surgery and I was away for a week at the hospital with him.

Doting

We brought Kairi and her brother Riku home when they were ready and that helped River get through things. He suddenly had his own baby to care for. He would sit and play with the kitten on the floor next to me as I nursed and rocked his baby brother. He was so proud of every little thing his kitty did and she connected with him. She calmed his storm.

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Something happened in that year. He was learning to care for his beloved Kairi and helping with his baby brother, and watching how sick Eph was and how much things were changing. He learned to let it go and roll with the punches. He learned that sometimes things have to change and all we can do is let them. He learned to find the storm inside his head and quiet it. The love his cat gave him would make things better. When he would start to fall apart, handing him his best girl put the pieces back together. He truly connected with her in a way he had never connected with anything.

the meltdowns have left Rivers life. He still gets stuck sometimes and needs to step out, but there is no more loss of control. He has battled the storm and come out the other side. There is still a large struggle everyday, but he is winning. We lost Kairi a few months ago. She snuck out the door and we fear a predator got her. River tells himself someone took her into their home and I hope that is true. She is 9 1/2 years old now and has a few good years in her so I hope that it is true. River holds out hope she will come home again and I let him keep his hope. Hope is never a bad thing.

That cat and I never were good friends but I love her more than most any animal I have ever had. She gave me back my son. She was our angel. So I believe that animals can change lives.  Ephraim has a kitty now that brings many  benefits to his life as well. It hasn’t had the same impact, but it has had a large one. We are thankful for all of our animals and how they have changed our lives.

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Now we are sort of starting that farm life. We lie pretty rural. The boys each have a black lab pup, they will be a year old in a month. We have two cats again and 20 chickens. We have plans to add more animals in over time and my kids love it and it has given us a lot of opportunity to grow.

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So give you pet some extra love, and if you don;t have one, consider adopting a new friend. Everything can make an impact from a tiny chicken to a full grown horse. Ferrets and kitties and mice and dogs, all give love and need love in return.

Always love,

Domi

 

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