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

Please take a moment and read this. Share this. Spread it around if you can. 2 weeks to sell 500 shirts is a haul, but I believe in people and I know that they can help.

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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Autism and changes, distractions and Angels

So this week has been kind of insane. Almost 3 weeks now since this whole scary mess kicked off. My emotions are finally starting to settle to a manageable level, or at least a level where I can shove them into a box and ignore them to focus on solutions.

The kids though, they are still having a rough time. The little dude most of all. Emotions are high around the house. We are all handling things differently. None of us very well though. Meltdowns abound. The singular joy of a meltdown is something i think every person should witness at some point. Maybe people would stop being so judging of other peoples parenting skills and just see that sometimes life is hard for kids. Maybe if everyone had to go through a meltdown they would just be nicer to others. Meltdowns are fricken hard. Why are we having so many meltdowns? Because we have no solid ground to stand on. No structure, routine or stability.

Stability

Autism and routine are best friends. There are more meanings to the word routine than how you plan out your workday. The kids need to know what to expect. I can plan out our days and even in summer when no day is really the same, I can plan them. I can warn the kids when things will change. And when things are rough and unexpected, they could always fall back on knowing that no matter what happened they could go home, to their room. They could go home and everything would be as it was. Now they don’t have that. I have to start thinking of packing. I have to start preparing things. The problem is, we still don’t have any place to go and they know that.

River is having a rough time. His way of expressing that is picking on his brother more. He has a lot more attitude and is more withdrawn. He is also getting more emotional. Things are upsetting him easier. I am trying to keep things as calm and normal at home as I can but they still feel it.

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Eph being goofy with the dinobot cutout and apparently Marilyn is being cheeky back there too

Ephraim is just weepy and whiny all the time. He needs constant reassurances. He wants hugs and I love you’s every time he walks into the room. He is more dependent on his lovies and has certain toys he won’t put down. He has a little plastic pokemon that lives in his pocket 24/7 now. He cries at every little upset. It is hard to help him feel better.

You can only offer so much of the promise of structure and routine that they need, when you have no idea what the next week will offer let alone the next month. They both really need that routine and structure.

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Mall playgrounds are still fair game in our family.

So we have been keeping ourselves busy.

Wednesday we went to Eugene and spent the day with Ephraim’s father. We had a picnic, fed ducks, played at the playground, walked the mall and went to see The Lego Movie at the budget theater. That was a really good day. We kept very busy. Ephraim loved being able to visit his dad there were lots of smiles and giggles and hugs.

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Eph with his dad

Thursday started off rocky. Everyone was tired, which added to the emotions. Especially in Ephraim. He had a rough morning. In the afternoon, we went to a BBQ at a friends. That was fantastic for all of us. I got to talk with other adults and some of the conversations were about what is going on and offers of help, while some of the conversations had nothing to do with what is going on and they helped me feel human for a few moments. The kids both got to hang out with other people and had a great time. After the BBQ the boys went to stay the night at the Grandparents house.

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a rousing game of driveway soccer made this little dude happy

Friday, I had to go to the dentist, so the kids were at grandmas most of the day then came home and helped me make dinner and most of the evening was calm but as the evening wore on, the crankiness came out. Little guy actually put himself to bed early because he was tired and upset.

So today started off with a bang. Arguing and crying and questions. River is snapping at Ephraim and Eph is crying because River won’t play with him and the dog wants to eat the kitten and my head is still spinning from yesterdays pain meds and it was just all a jumble of crap that I had to wade through to try and finish writing my term paper for Advanced Anatomy and Physiology.

This was no fun and I thought I was going to lose it. Then, there was a knock on the door. Two packages sitting on the porch, with the kids names on them. Just in time too. The boys got quiet for a second as they tore those boxes open. Ephraim squealed louder then I have heard in a long time, while hopping up and down trying to get his new Stuffed Creeper out of the box. River, in his too cool teenage way, just said woah how cool as he delicately extracted his new dragon from it’s box. Both boys wore smiles as bright as the moon.

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It was hard to get him to stop hopping for a picture

We have angels. One of them sent the boys these gifts, just to give them something to smile about. Thanks M! You are amazing and we adore you.

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Dragons are the way to this kids heart.

Some of these angels are spending time looking into tenant laws and sending me information or searching for rental houses or asking if they can babysit or offering to pack. And some of them are sharing our story. There are Angels making donations and offering aid in places we never knew. There are Angels we have never met who are sending me words of encouragement.

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super happy boy, you can see from the puffiness how many tears he has had today, this guy made it better.

 

All of you, everywhere, have touched my heart. Right now it is so hard to focus on one thing. I am at a point where I am taking it a day at a time and when the days are too hard we go an hour at a time, But I am not giving up. I don’t know if the fundraiser will continue to get attention or if I will find a suitable rental or if we will be living in the camper for a bit, but I know that people support us and want to help and that is more then I have ever really had before.

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My phone was stupid today and his smiles aren’t often caught on camera, but he loves this dragon

So thank you too all of you out there. Thank you for keeping us in your thoughts. Thank you for believing in us and showing us people care. If you want to donate or share our story we would appreciate it. If you just want to send us a pray or happy thought, those are much appreciated too.

Always Love,

Domoni

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

The Chicken Chick

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