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.

River’s Birthday Party

I have struggled writing this post. When I write these I tend to put all of my heart out in text. I don’t seem to be able to keep things out. Putting your heart out with all of its pains and flaws alongside the joys is not a bad thing. It is a scary thing though. Revealing my heart and my life and my family to strangers is odd and terrifying. Knowing that people read these posts and can know such intimate things about me and form opinions based on those tidbits of information has made me nervous. I chose to keep this blog because people encouraged me to share our story. Do I keep it simple or do I really share our story? I choose to share the story.

So River turned 18. It happened. We celebrated!

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River’s first day!

On the 9th we had a family dinner just the three of us. I made the meal he requested and we had banana splits that were extravagant and delicious. He got his first gifts from me, a new Halo game and an xbox gold membership to play online. That may not seem like a big deal to some, but it is somewhat of a big deal to us. I am protective and have limited the online interactions my kids have been allowed.There are weirdos on the internet (some even keep blogs). So he was beyond excited. I had reached out to a few friends and garnered him some safe gaming buddies to get him started. So he ate and gamed and was a happy dude.

I had so many emotions leading up to his actual party. I invited quite a few people. Some we have known for many years, some we are just getting to know. There were people who are really important to me that wouldn’t even give us a definitive response on if they would come. Some people completely ignored the invitation. This is really hard to process, how that makes people feel. When people you care for don’t even acknowledge an occasion like this. Kids don’t deserve that. This is the part I have struggled with in writing this out so I won’t go into it any further, but it hurt that this happens.

On the 14th we had a birthday party. I was terrified about this party. Our gatherings in the past have rarely turned out. Usually only my parents take part, but they wouldn’t be with us this time because Pops was in the hospital and Mom was with him. River has never had a birthday party where friends came to celebrate him. 18 years of no friends. I was so scared that he would be disappointed and sad.

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Presents are always a bonus

2pm rolls around and it looks like rain is coming so the BBQ on the patio idea quickly became an indoor shindig. Our first guest showed up. One of my oldest friends and her 16 year old son. River and J sit down to some video games while his mom helps me finish getting food ready. Ok, this is a promising start. I am still a bundle of nerves hoping others show up.

3pm and the next car pulls in, a group of my friends who are all adults but they are like family. They come in and chit chat with me after the initial “yay your here” River goes back to games with J.

3:15 and T, a boy from River’s school rides up on his bicycle. (HUGE DEAL to mamma here). A friend from school, River has a friend from school at our house for his birthday. This has never happened before. T joins River and J for some games and River is obviously happy. At this point I am starting to relax and focus on food and such. The fact that there are already people in my house and River is having a party is good enough to call the day a success.

A few minutes later another car pulls in and the D family join us. Their kids are closer to EPh’s age and he jumps on the excited train and scoops in to hang with them. Then comes one of Eph’s friends B from school and his mom and we have a full house. Food is out and people are snacking and chatting, kids are playing games and having a good time. At some point they go out and play basketball for a bit and everything is going really well.

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Basketball with friends

I cook up the burgers and hot-dogs and people dig in. Our house is crowded and loud and glorious. I had to step away and cry at one point, I really thought things would go bad. Then the S family shows up and that is four more teenagers and their mom. This is another family we met through school and River really likes them. I believe at this point there was some guitar hero going on upstairs and all of the kids disappeared for a bit. Candles are blown, cake is eaten and I am in awe of what has happened in our home.

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that smile says it all

The day is passing and some people are starting to go home. Eph’s buddy B is gonna stay the night so as people head off, I start cleaning up while the three boys are having fun upstairs. River had received some amazing gifts including a Lego set that they are checking out and putting together. Another car pulls up and My friends A and M show up with A’s kids. A’s daughter is the little girl I have mentioned here. She is an intelligent little girl  who also lives with autism. River has formed an amazing bond with this little girl that surprises me more every time I see them interact.  This little darling had made River some presents herself.  Very creative and lovely gifts that River has displayed on his desk and book shelf.

I got to sit for a bit and visit with A and her brother M while the kids played upstairs and about an hour later around 8:00 pm their sister and my other friend showed up with her family.  This is Eph’s best friends family and so they all quickly ran upstairs to join the kids and we decided Eph’s buddy would stay the night as well.

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My attempt at a Sonic cake

We visited for about 2 more hours and sometime after 10pm they all left and the day ended. The boys and the two boys who were staying the night played games and legos and other boyish fun for a couple more hours before bedtime and all was well in the world.

To most people, I suppose this day won’t seem out of the ordinary for a birthday party. For our family, this has never happened before. Seeing my children laughing and playing with friends is something that we never had before this year. The only other kids that were ever around were my friends kids that we saw on occasion but they had never made friends on their own.  It is hard to explain how much it meant to see my son opening presents and eating cake with other people. Our lives have been so isolated. Autism can distance you from the world in ways people don’t understand.

When it came time for me to stop working outside of the home because River could no longer manage school we lost most opportunities to meet people. The heavy schedule of therapies and routines that were necessary to get River through day to day life pulled us out of the small social circle we had. People started to distance themselves. When Eph was born sick, things got even more complicated.

In movies and feel good stories you see familys in crisis and all of their friends rally around and life gets better. In reality when things get hard people disappear. The longer the duration of the difficulties the further people fade away. You have to say “no we can’t make it” or “I’m sorry we can’t have people over today” so often and  it gets hard to answer the phone and return calls so it gets to a point that people just stop trying to be in your life or keep you in theirs. It is a sad truth.

I was so engrossed in getting River through everything and getting Ephraim healthy that my whole life was appointments. Doctors and therapists and specialists, hospital stays and surgeries and interventions, these became all we knew. I stopped being Domoni and was just River and Ephraim’s mom. I had no time for anything else. It was worth it though.

River will always have autism, but now he has the tools to help him get through the hard parts. Ephraim is still learning to live with his autism and his health is still a day to day worry but it is better and we have settled into a real life. The boys have this wonderful school and now they have friends. Again I say, it was worth it.

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18 and happy!

So it wasn’t a huge extravagant party, and we didn’t get to go to Lego Land (but someday we will), but it was an amazing day. River said it was the best birthday he had ever had and I don’t think I have ever seen him happier. My baby boy has friends who accept him and celebrate him. My family has friends who see how amazing my kids are and give me hope that our lives are only going to get better. We are finally moving out of the autism isolation bubble and back into the real world. It is still a scary transition but we are getting there.

To all of the people who wished River a happy birthday and to those who came and gave him a day he will never forget, thank you. You may never know just how much you have meant to us.

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

Building Blocks for Birthday Dreams

I started a facebook page to try and raise money to take the boys to Lego Land for River’s birthday. I have updated it with some personal stories and was encouraged to start a blog about all of it. Some people say I can write pretty words. 😉 I do enjoy writing and some days it helps to get it out there. Some days are very rough. Some days are amazing. This is the bit about how it all started.Image

 

River was diagnosed with asperger’s when he was 8. This diagnosis came after a very rough couple of years where he was kicked out of 3 schools for attempting to elope and hiding. That all culminated in a horrific traumatizing event where he ended up being arrested and I decided that was the end of public school.

This June my son River will turn 18. If you know River you will know he is the sweetest kindest 17year old boy who dotes on the younger kids and loves pokemon and lego. He is working hard to make friends. However, he is not 17 as most boys would be. He relates well with his 9 year old brother (who is also autistic) and the other kids about that age. I love the childlike innocence in him. 

River has really struggled with his asperger’s syndrome. When he was younger, it took over his life. He didn’t know how to make friends. Sounds and lights terrified him. Crowds were torture. Tastes and textures were traumatic. He was happiest living his life alone in his bedroom with his legos. It was very hard to reach him.

Years have passed and River has grown. He is learning how to handle himself. He can go shopping without losing his head. Though sounds still bother him he can tolerate them. He is going to a school with other students now that he is learning to interact with. He is finally really engaged in the world around him.

Between the struggles River has had and my own health issues I haven’t been able to work outside of the home for many years. We have struggled financially and I haven’t been able to do alot of things for my sons that kids dream about. River has never complained or begged and always seemed to understand.

A few months ago he brought an advertisement for LegoLand to me and asked if we could go. It broke my heart when I had to say that was something I couldn’t do for him. He understood and didn’t complain. He just said ok well maybe someday and went back to creating his fancy lego creatures.

I have been working hard to make life better and get on our feet, I have started my business and am pushing to move that forward but these things take time.

I want to give my son a wonderful childhood memory while he is still a child.

I run my own business where I make soaps and other items. I will be listing Building block and mini fig soaps and magnets online to be purchased in the hopes I can raise enough funds to take my kids to Lego Land for Rivers 18th birthday. I will also be listing a page to accept donations if anyone would be willing to help.

Asking for help is not my strong point. My son has had a really rough life, I just want to give him something good that he will always cherish. ALL funds raised, even if it isn’t enough for the dream trip, will go to giving him the best 18th birthday we possibly can.

 

So that is the story of that, if you want to help that page is:

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

 

So I will do this blog, and I will talk about our lives. I will open us up to your eyes and opinions. Please be nice.

 

Always Love,

Domi