Personal post. Autism sucks, can you help this family?

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Personal post. Autism sucks, can you help this family?.

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My baby made it, guess he isn’t a baby anymore.

Rio baby

19 years ago today was when the best thing that has ever happened to me occurred. River was born a tiny little perfect person. Pink fingers and white hair and blue eyes that everyone said would change when he got older. It took us years to figure each other out. Me the stupid 17 year old kid who definitely didn’t have shit together and the baby that never liked  much. We couldn’t figure out breastfeeding, I couldn’t figure out how to do it all. His tummy seemed to always hurt, we still haven’t figured that part out. He cried and cried and cried, unless I popped in some social distortion and bopped around the apartment. He changed every moment of my life and every fiber of my being.

River has fought tooth and nail for most of his life. From the horrible “colic” he had as a baby, to the inability to connect with other little kids at 3, the getting constantly penalized in kindergarten for questioning the teacher, getting kicked out of first grade, 2nd grade and third grade for elopement and shutting down. Arrested at 8 because of abusive teachers aides who shouldn’t have had a job with children. It just kept going and going and he just got so lost under autisms weight.

Removing him from school and teaching him at home was a break through, though I could never have gotten my son back without the help of the amazing people at The Childrens Guild Easter Seals therapy program in Salem, OR. I hear they had to close their doors due to budget cuts, which breaks my heart. The program of intensive therapy for River, Me and us as a family unit was what saved us. Teaching me how to help him, teaching him how to help him. All the tools we needed were delivered. No, it was not a cure. We know he will always struggle, but the tools they taught him gave him the ability to live in a world that is unaccepting, unforgiving and gosh darn loud.

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I was told once that I should institutionalize my son. That his aggression would make him a danger to everyone around him. That he would never function as an adult, they said he had no chance of finishing school. They were wrong on all counts. River completed his last final of the year today. He is graduating High School on Thursday.

River still battles his autism. He still takes things rather literally and still has tics that appear when he is stressed. He is more sensitive than other kids at times and he can rarely fly off that handle when pushed. But now, he has the tools to confront those stressors. he knows how to slow his breathing and calm his bodies. He knows that home is safe and always will be.

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River volunteers every week at the local food bank and thrift store.  The experience he has gained from working there has helped him grow immensely. He goes in and works like it is a normal job. They understand him and his needs and they support and encourage him. He is corrected firmly and kindly when he struggles. He has learned how to handle the stress of a job, which gets him pretty close to other 19 year olds maybe even past some in my opinion.

Today, my baby boy. The child who saved my life, turns 19. He may not be ready to leave home and take on the world, but he proved all those jerks wrong. And that is pretty dang cool in my opinion.

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So thank you to Easter Seals. Thank you to the amazing teachers at LRA. Thank you to The Action Center. And thank you to every single person who has impacted our lives. We love you and we thank you.

Now if you are in the area and know us, come party at the park with us Saturday. This boy deserves to be celebrated.

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Hello Strangers

Hello again. I know it has been a long time. The last seven months have been busy, emotional, wonderful and stressful. Ok so basically they have been normal. 🙂

We have settled into lives in the new house. The kids love the space and being so close to school and friends and the park. It has opened up more opportunities for our family and that has been nice. I have been so busy that half of what we own is still packed in the garage though.

Sky and I being goofy.

Sky and I being goofy.

I am going to be perfectly honest. I haven’t updated the blog in months mostly because of the wonderful commenter who tried to shame me. She failed in making me feel ashamed of asking for help. She did, however, make me want to pull back from opening myself to it happening again. That attitude was letting that persons poison win and I no longer want to do that. I need this blog. I need to be able to share my feelings, fears and pride with the world. Even if noone reads it. I need a place to put it. There is so much more to our lives that I can’t express at home.

So, moving right along. This is where we are.

River is in his senior year of high school. This has so many mixed emotions involved in it. He is struggling with realizing the school year is coming to an end. He loves his school and hates change, so I know how hard the end of the year will be. Also involved in this is preparing for public engagements.

River at the Vancouver Menorah lighting for Chanukah. The last time he had a highly successful public outing.

River at the Vancouver Menorah lighting for Chanukah. The last time he had a highly successful public outing.

Today he had a practice presentation for his senior project. He has to talk about volunteer work he did this year and its impact on his life. He came directly home from school very upset after his presentation. Instead of staying for the day of open studies, he made the choice to walk home and let himself decompress. Seeing him so overwhelmed is very hard. Public speaking is never going to be easy for him. Upside, he got through it. He said he broke down in tears a few times and got flustered, but he made it through. So this week I will be drilling him on it all week to get him really ready for the official presentation next week.

River has been going to youth group at the church on Wednesdays too. Which he chose to do on his own. He enjoys it, but admitted to me this week he doesn’t really talk to anyone there. I hate that he still has no friends no matter what I do. He just doesn’t know how to approach people or how to interact with people who approach him. He tries though and I couldn’t be more proud.

Mr. Man turned 18 last summer, so he got to vote.

Mr. Man turned 18 last summer, so he got to vote.

Sky is flourishing. He loves going to school and being with his friends. He has taken up writing fanfic and creating his own Minecraft skins and artwork. Sky joined 4H and is raising guinea pigs. He loves animals and enjoys getting to be around other kids. He is thinking about joining scouts with his best bud too.

Little dude got a new hair cut.

Little dude got a new hair cut.

Little dude still has alot of anxiety though. His health is still a problem that we are working on. That will probably always be the case though. The kid is tough though and I know my little fighter will come through it all.

As for me, I am still continuing my schooling. Getting good grades and trying not to get burned out. I am providing childcare full time for my friends two kids and that is alot of work.  I also am involved with my book club Fangirls Read It First. I review books, edit other members reviews and help run the public Facebook page. It is fun and a good outlet for me that has nothing to do with my kids. We all need something like that.

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So I aim to have this back up and regular. our little family will continue its growth. We won’t lose sight of our goals even when autism, money issues and life in general kick us down. We are fighters and we keep going.

Blessings

So, the house came through. The place that I thought we weren’t getting is ours. Papers signed and key in hand. We move in this weekend.

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The kids are very excited and much will need to be done to be ready. All the chaos brings its own level of stress especially for the little dude, but knowing that this will be over and settled soon makes it easier. We are so thankful to everyone for the prayers and support.

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Always Love,

Domoni

Having a night.

Feeling pretty defeated right now. The house hunt is not going well and time is ticking away. We had a place where the guy made me feel like I was going to get it but then tells me there is an applicant ahead of me and he approved them. I feel toyed with. And considering how I got into the house hunting situation that isn’t a great feeling.

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Our littlest Thalia will be going to her new home this week 😦 🙂

Our situation just sucks. It is near impossible to find someone who accepts cosigners. Apartments really don’t like it. I just don’t make enough money to do it alone though. I am starting to get really scared and desperate. We will probably end up living in the camper. That isn’t a horrible thing, except the age of the camper means parks wont accept it for monthly stays. So again we have to find somewhere to park it.

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Eph getting tired with his pup Lovely waiting on a house viewing that didn’t work out.

I am struggling to stay positive. The kids are having a hard time too. Ephraim has been crying off and on for the last hour and I can’t even figure out why. Today was pretty easy for him, he just hung out with Grandma, but now he is an emotional wreck headed for meltdown city.

Which is only going to get worse over the next few days. We are starting to thin the herd here. Yesterday I put word out to rehome our tortoise shell kitty and a friends grandma is going to be giving her a new home. Tonight, I have to put it out there to rehome Ephraim’s kitty stormy. He is not thrilled by this as you can guess. Every conversation we have had about that has gone very badly.  My parents are taking on the chickens, so that is at least one worry that I don’t have to deal with now. Eph was not a fan of getting rid of them wither. I hate having to break my kids hearts over and over again.

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these two have been near inseparable since we got her.

This whole thing just sucks. In less then a month, we will most likely be homeless. That is how it is looking right now. I am bouncing back and forth between anger and despair. This is not how children should be raised.

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Eph is pretty angry at me about having to let her go 😦

We had River’s social security review today. The transition over to his own file now that he is 18. I was pretty nervous about that, but it went well. Now we just have to wait and see if they are going to decide that because he is 18 his disability has suddenly disappeared, because yeah, that is how autism works didn’t you know.

We are still trying to figure out Ephraim’s disability and we just started the process of getting me approved to provide childcare for a friend. If that all goes smooth, I will actually have some money coming in and wont be so stuck. but of course I can’t make any of that happen before the deadline for moving is here. So it doesn’t really help right now.

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oh yay

I am tired of crying. I am just so tired. My birthday is in less the 2 weeks. So hey universe, could you please cut me a break.

Always Love,

Domoni

http://www.gofundme.com/Dreaming-of-home

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

Proud Momma share

Happy quick little note today. The Little Dude completed school for the year. Aside from one more in person science class next Wednesday all of his school work for the year is over. Next year he will be doing 5 grade. YAY! He is of course super happy about getting to move over to the summer sleep schedule of staying up an hour later and sleeping in, which makes me giggle as I almost never wake him up early or even at all. One of the perks of homeschooling is we start when we feel like it. So hooray for the Little Dude on finishing school 3 weeks early.

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Now to the Big Guy. He came home in a great mood today. He has completed his history course for the year, including the final. Which he was super happy to say he only missed 2 questions and one of them he said was he accidentally clicked the wrong answer. Either way only missing 2 questions on a final in a course he somewhat struggled with this year is fantastic. We are so super proud of him for this. One course down and getting very close on the others. Seeing him come home from school so obviously proud of himself made this mommas day.

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Tomorrow we all get a break and are going on a field trip with the school to OMSI to see the dinosaur exhibit. We are all excited for this one and to spend some time as a family in a place we love. This mom is super happy and really needed this day. It makes everything a little lighter when the kids are so exuberant. Perfect ending to a long week.

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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