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.

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

 

 

Making connections.

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First day of school excitement and nervousness.

So here we are, another school year is about to end. The little dude has almost all of his work completed and will be finishing up the last of his courses tomorrow aside from science (more on that in a sec) The big guy is on a more structured program and struggles a bit more at keeping on task, but he is getting close to the end and should be ready for finals week  and done with school in 3 weeks. I am super proud of the work they have accomplished.

So why does my heart feel so low?

Let me tell you about the school we were associated with this year. My boys go to a different kind of school. It is through the public school district and there are other students and 2 teachers and a little building and classes and the like. Our school is different though. Our school uses online curriculum. The little dude uses the K12 program and I guide him through the year. The majority of his schooling is done at home with provided curriculum. Most Wednesdays he goes to the school building and has a science class with other students. He is in 3rd grade doing 4th grade curriculum and his science class is 3rd – 5th grade and there are 6 kids in the group. He really enjoys it and has made a very good friend through the school. That is the key and why we picked this school SO that the boys could make friends. For the first time in Eph’s life he has a real friend. So this year was pretty major for little dude.

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Eph and his buddy ready to hunt Easter Eggs. (pictures of peoples back because I am trying to keep our friends faces private)

Now the big guy, he is doing his junior year of high school. He hasn’t done a full year at brick and mortar school since he was in the 3rd grade. He struggled so much and had some pretty traumatic events ( I talked about the painful reflections here) so I have mostly home schooled him. I used a few different curriculum and sometimes I just went to the library and found things to teach him. I guess I didn’t do so bad because he is doing really well in school this year aside from his time management struggles.

Since River is in the high school program, his weeks are different then Eph’s. Rio uses a different program online called apex. It is very much a self propelled program where he just goes along at his own pace, though there is a calendar of what is due when for him to stay on time. It is a great program and he likes it. He can and does go into the school building on Tuesdays and Thursdays as well as every fourth Wednesday for science lab. On top of that, his teacher stays available over video chat when he needs help. The teachers are a husband and wife team. He works with the high school kids and she works with the k-8 kids. Both are amazing with all of the kids and it is a great environment.

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The Big Guy enjoys the program and the ability to work at his own pace.

So again, why am i down?

My hopes for this school year was that the big guy would learn some social skills and most of all, make a friend. Someone close to his age that he could talk with and spend time with and feel like he had a friend. While he has learned some social skills and he has taken part in activities he hasn’t really connected with any of the other kids. He will hang with the younger kiddos at the social gatherings and they enjoy talking with him about Pokemon. That isn’t a bad thing. He likes when Eph’s buddy chats him up about pokemon and such but it isn’t the same thing. I just hurt so much when I see him struggle and he wants so much to have a friend.

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The Big Guy joins the Little Dude and his pal for a little bit of pizza and cartoons.

I don’t know how to help him and it breaks my heart. My son will be 18 in a month and he has never had a friend. We have started planning his birthday party and I asked him who he wanted to invite and he  said “I don’t know, Grandma and Grandpa” 

So I invited my parents and Ephs friends family (who have become great friends to me and River gets on well with the kids who are all Around Eph’s age or younger) River has connected with a young girl in that family who has AS. She has taken to him and he seems to calm her. So I suppose that is a friend even if it isn’t conventional. I invited people I know to join us for the party but there is this huge pain as I sit and think of these invitations. I have never been able to be that mom who invites their child’s friends to enjoy their day with them. My amazing son will be 18 and he has never had a birthday party where his friends come and hang out with him. In fact the majority of his birthdays are just me his brother and my parents. Neither of my sons have been able to have a birthday party experience. 

This was why I wanted so badly to try and give them the lego land dream and why I will keep trying to find a way to make that happen. They are such amazing boys and I wish the world could see that. I know some day someone will meet him and see past the struggles to the amazing, loving, intelligent young man that he is and they will want to be a part of his life.

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We will hold on to hope!

I had hoped this year would have been the year where he made a real connection and had a friend. Though my heart hurts for him, I will just keep hoping. Next year he will be at the same school. Maybe that will be the year. Just keep holding on to hope.

2 1/2 weeks until my baby boy turns 18. all he wants is some friends to come bbq and play video games. I wish that was easy to give him. I hope people come this year. Even if it is another year of just us and the grandparents. I will make him some bbq and I will play halo with him all day if that’s what he wants. And some day I WILL take him to LegoLand. Just keep pushing forward. 

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

Dealing with life

So I haven’t been very active online lately. Haven’t been blogging for this or for my work. I needed to pull myself back and tend to some personal things. I started school and it has been taking much of my focus. Things have been rough around here in a few different ways. I feel bad though because I need to focus and push through all of this. It is time to start planning River’s birthday party.

I can’t believe he will be 18 in less then a month. I worry because we have had very little success getting people to show up for things. My mom is usually there but I can’t depend on anyone else. I am terrified he won’t have a good day. We had started the fundraiser for Lego Land and have raised around $450. Not nearly enough for legoland next month. After discussing things we are going to use a little of that money for a bbq at home and continue to fundraise until I can make the kids dream come true. 

We have never had good luck with parties. Aside from my mom people don’t tend to show up. He wants people to come and I want people to come, but I can’t make them come. Last year my boyfriend at the times family  came and my friend brought her family but noone River invited came and past relationships being past means I can’t expect those people to come. I expect  that it will be another year of just my mom and pops. And it breaks my heart.

River wants friends so badly. I can’t do anything about that. He went to a school this year with other kids but he didn’t make a friend. He just doesn’t know how. I have tried to set things up but they fall through. People who have been in our lives for years can’t be depended on. I just don’t know how to make it better for him.

So I am praying that this year won’t break his heart and that I can eventually save and raise the money for the LegoLand trip. I just need to buckle down and push things out. I have been flaking and I can’t do that anymore.

So this is me, shaking it off and moving forward.

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

Ephraim says….

Does your child know they have autism? Do they know what it means?

I asked Eph, my 9 year old, what he thinks about autism and his life.

Ephraim says….

What is autism?

“Autism means I don’t think the same as other people do.”

What does it make your everyday life like?

“Sometimes I kind of miss what happened before and can’t happen again. I worry too much about things I used to have.”

What is good about autism?

“Autism is good because I like what other people don’t like. Sometimes I just am happy for no reason and I can just run and bounce around.”

What is bad about autism?

“Sometimes I imagine things that are scary and I can’t stop thinking about them. I feel very sensitive and I get sad easily.”

Do you like having autism?

“umm, a little bit.”

Do you dislike having autism?

“No”

Would you make it so you don’t have autism if you could?

“No way. I wouldn’t make it go away because I wouldn’t be me and I only want to be me.”

Ephraim has known he has autism since before his official diagnosis. His answers make a lot of sense. Ephraim is a very sensitive boy and he cries easily. If he thinks you are upset with him he may cry. If he thinks you are mad at him he will cry. If he thinks you are hurt, he will cry. He has more empathy then most people I know.

His memory is scary good, and it is often sad. He will think about things and they get him down. One odd recurring sadness is a pair of teething keys, he talks about them often and always wishes he still had them.

Ephraim is a little lover. He is affectionate and has to hug every person in the room before we leave any place. He is the sweetest kid and people take to him easily.

Ephraim never questions why he is the way he is. He has never asked why he was different he just enjoys being him, most days.

Some days, being Ephraim, can be horrible.

He doesn’t talk about the days where he can’t control himself. The days where everything gets to be too hard. The days where he screams and cries and lashes out. The days where he tells me he is the worst child in the world and that he should die. Those days, we like to pretend don’t exist. When everything overwhelms Ephraim, he injures himself. He pinches and bites and hits and screams. Those days kill me a little bit more every time. Luckily those days don’t happen often.

Often we talk about what it is like to raise a child with autism. The parents of ASD children gather on social media, reaching out for a connection. We need someone to understand what we feel. The horror of the bad days, the joy of the good. We need advice on therapies and finding doctors. We need to vent about the IEP process. We need to be able to talk about poop.

The thing I have noticed in the many years I have reached out, we don’t talk about how they think of it very often. We reach out because we are tired and exhausted and we need someone to understand how very hard it can be. Let’s take a moment and be sure we notice how our babies feel about it though too. Many times they are just as tired. They are just as scared. They need to be understood too.

Ephraim wants you to know….

Sometimes is is hard to have autism, I don’t like to be sad and scared. Sometimes it is awesome because I like to play and I like to be happy and I have a lot of happy in me.

A little share from our family to yours.

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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

Not a great day today.

Having an emotional day. Feeling really discouraged. I think I am stretching myself too thin. I am having to manage the boys school, my schooling, keeping up the homestead, and then there was Easter. It is all a little rough sometimes.

We planned an Easter get together this last Sunday and the boys got really excited for it. It didn’t work out. Half the people didn’t bother to respond and the others cancelled last minute. I understand because the three groups who most wanted to come had to deal with illness and you cant control that, but it was hard on the boys. We still hunted eggs and I tried to make things a bit more festive for them. Mostly they played a video game together on the xbox and they enjoyed that.

Sometimes I feel like I am doing it all wrong. Like I am cheating them out of life. River wants a friend so bad. He just doesn’t know how to get one. Ephraim is so happy to have a friend now. They still miss out on so much. I keep trying to plan things but I just don’t know how to do it. I don’t know how to give them more. 

It hurts to watch my boys struggle. The crappy part is I know how they feel. I am trying so hard to feel like I have a connection to someone. I have people that I see on occasion but I don’t really have a friend. I don’t have someone I talk to. Someone who knows me and makes time for me and that sucks. I am not great with people and relationships. I don’t know why. I guess some of the choices I have made contribute to the end of friendships. I had a friend I was close to for years but that friendship ended and no matter how much I have tried to repair it it is broken and gone. It is hard to watch all the people who were so important to me slip out of my life. 

I have a new friend, who is my kids best-friends mom and I like her a lot and she is probably the closest I have right now. But we are just getting to know each other. IT takes time.  So I am kind of in the same boat as my kids. We all just want someone to want us. Is that stupid? I don’t know. It is hard though and it hurts.

I am starting to lose hope on the fundraiser I started. It was a good idea. I just don’t know how to make it work. I still hope to eventually be able to give the boys something amazing. It may have to wait until I finish school and am financially solvent. I hate that I can’t give them that joy. I hate that I always have to say no and see their sweet eyes cloud with disappointment. 

We were given this amazing opportunity to attend BrickCon in Tacoma this weekend. To sell the soaps and such. But I don’t think I can afford the travel and all that entails. It is a 6 hour trip there and back Friday Saturday and Sunday. I am still trying to figure it all out. That may be the only way I can raise a good amount of money. The thing is River’s birthday is in a little over a month. School ends around June 13th. so I have a little longer then that to raise the money and arrange the trip and it just may not happen. I feel really disappointed in myself.
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I think I need to just shift focus.

Ephraim has had it really rough lately. Things have been much harder for him to comprehend and he is struggling. We have some more referrals going out for new therapists. I am hoping to get things more stable for him. River is plugging along, he is doing really well in school and Loves going into class and seeing his teachers. I feel bad it doesn’t seem he has connected with any one there and didn’t really make a friend this year but he is doing ok. He has been more emotional lately and I am probably going to put him back into therapy too.  While I am at it, I should probably just find me a counselor too. I need someone to talk to. It is really hard to feel alone and while I know things are going better, things are still really hard.

Autism takes over your life. It is hard to take it back. I would give so much to just give them something amazing. Something normal. Something that gives them that moment of magic. I Just want to give them a big win. Does that make sense?

If you read this ramble of emotions, thanks for sticking with me.

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