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

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