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 He has a lot more attitude and is more withdrawn.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

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Overwhelmed.

I don’t even know how to express what I am feeling tonight. When I wrote the blog this morning and decided to go ahead and take the advice to start the gofundme page, I didn’t actually think anything would come of it.

People can surprise you when you need it most. The last 2 weeks have been so confusing and emotional. For me and for the boys. Having people reach out to offer comfort and support is something we never really had much of before. Aside from my mother, our support system has been scattered across the country and I have felt so very alone at times.

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My original inspiration. 18 years of showing me how to be a better person.

The last 13 years have been harder then I can explain. Sometimes it seems surreal. Like something a fevered brain would make up, or a lifetime movie to entertain the home bound masses in the heat of the day.

How we went from me and River doing well, I was in college and he seemed like any other little dude, to one day a small pain in my side turns into days in the hospital and now years of progressive problems. Frequent hospital trips and too many doctors, that was not how I planned to spend my life.

Then River suddenly shows me how hard the world is for him and our lives spiral into this tiny little box. Just me and my son, working through our hell together. Then when I start to loose hope we will get out of that box, Ephraim comes along and makes us love him. He gives us more reasons to fight. Watching an infant smile through that much pain changes how you see the world. Seeing my little baby face such a serious surgery that could have had some major complications should not be something that I say this about, but in a way he saved us by being so ill.

I had Ephraim in the middle of River’s worst years. That time was dark and painful in ways most of the people I knew couldn’t understand. And we isolated ourselves, and people let us. I was at a point that I didn’t think I could get through it. Then that baby reminded me that pain doesn’t have to rule you. I started to fight harder. I learned more about my Porphyria and I worked harder with River to get him through his pain. I pushed Doctors to listen to me about what Ephraim needed. I argued with  teachers and principals and shrinks about how to bring River back out of the hole. I became my own champion and battled my illness. I became a warrior to save my sons.

If I didn’t have Ephraim, I don’t know if I would have reclaimed that strength.

My mother has stood beside me, even when I didn’t deserve it. I have made bad decisions and fallen on my face so many times. But I know no matter how far I fall she will help me back out.

I have grown. I am not the damaged child I used to be. I can see that when I look at River. When I see who he has become. If I was that broken little girl who was lost in herself, I could have never raised him to be such an amazing young man.

Watching Ephraims face light up and the sound of his innocent laughter is like a beacon when I feel overwhelmed.

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My second little fighter. He was born stronger then anyone I know.

I do find myself scared and overwhelmed often, as of late. Before I moved into this home, I didn’t really have friends. I know I do now. I know there are people who love us, who want us to succeed. People who will fight with us.

All of you people out there who are sharing our story, who have donated to help me give my children something I can’t do alone, you are what gives me hope. Some people who have never met us, but can feel our struggle. I have no idea how I am supposed to thank you.

This morning I wrote a post asking the world to help me. I opened my family up to what I feared would be shaming. I feared people would call me unpleasant things. I feared many things. I posted that page with tears streaming down my face and had to walk away from it out of fear of repercussions. 

When I came home this evening, People had donated to help us, people had shared our story. Over 350 people have read our that blog post.

When I tucked Ephraim in tonight, he was having a hard time. He got to play at a friends for awhile today and there were more people then he expected. He did amazing, but he had some problems after he came home, over stimulation does that. So he was teary and wanted a cuddle. He asked me if we were going to be able to find a place like this. I told him I didn’t know what we would find.  Then I told him that so many people care and want us to find a good home that something good will come through for us.

So thank you. Thank all of you for bringing hope back for me. It makes it easier to comfort my babies when I have so many people comforting me.

Always Love,

Domoni

http://www.gofundme.com/blaeok

Reaching out

Asking for help is hard. It is really hard for me. To not be able to provide for my family. To be 35 and to be so dependent on my mothers help. I know that staying home and raising my sons is what I have to do. I know it is what I want to do. I know it is what they needed.

Let’s be realistic, you just can’t put autistic kids in a daycare and go about your day. They couldn’t go one whole day of school without me having to come get them. So the choice to stay home and not be able to work wasn’t really even a choice. The life we have had to lead was worth it. 

I gave up going out with friends for bringing my son out of his head. I gave up new clothes for  watching my son make new creations. I gave up working and having a social life, for teaching my son his life was worthwhile.

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I know that other people call me a sponge. I have been called worse. I have been shamed for having to live off my sons SSI and getting food stamps. I have been stared at as my child needs to stop and spin in the middle of the grocery isle and I don’t stop him. I get comments that my almost 10 year old son still rides inside the cart at the grocery store. 

I say I don’t care, but I do. I care when people look at my child and see something defective. That child who fights a war inside himself everyday and has never said a cruel word to anyone. Who loves to hug and laugh and hates when people hurt. If he needs to spin please let him spin.  I hate that we live in poverty. I feel like I should be able to give them things that I can’t. I feel like a failure that I constantly have to say no.

“No, Eph, I can’t buy you that deck of pokemon cards you want.” 

“no, River, I can’t get that book today.”

“No, I cant……..”

“There just isn’t the money, I’m sorry”

They know that things are just things, but children are allowed to want things. They are ok with not getting the things. They usually understand and don’t give me grief.

Having to tell them “No, I can’t keep you in this home you love. I can’t stop this from happening. I don’t know where we are going to go. I don’t know if you can keep your pets. I don’t know if we will be near your school, or your friends”

I hate having to say those words to them.

I read every post in this blog this morning. There aren’t many I know, but I reread them all. The sad ones, the one where I was scared the kids weren’t making friends. The ones where I talked about how living here has changed them. The one where I celebrated with all of you, the joy of seeing River have a real birthday party with friends. Finally the one saying I have to take these babies away from all of this.

I don’t know where we are going. I am scared. I don’t know if this is going to make me have to stop school again. Which will slap me with the student loan payments. I don’t know where we will end up. I don’t know how far back this will take my kids. How much will they have to lose. 

Ephraim is going backwards. He needs hugs all day. He is sucking on his shirt and his fingers and his chewy necklace. He is calling me momma again. He is having more trouble with his bowel issues. He is slipping backwards. He is scared of everything.

I don’t want to lose all that I have gained with my baby.

My other mother messaged me this morning and encouraged me to start a gofundme page. She isn’t the first person who suggested it. I feel ashamed. I feel like I have no right to ask the world to help us. As she said,

“I think if you describe your situation, like you did this past week in your blog, lots of people would want to help. What do you have to lose?? Nothing! However, if you don’t try it, you have lots of possibilities that you could lose out on.”

She is right, what can I lose. My children deserve me trying every option out there.

SO here it is. Me reaching out and asking the world. Please help me give them a real home that will always be theirs.

Always love,

Domoni

http://www.gofundme.com/blaeok

Today was rough

Today was rough, yes I titled this entry that way but it bears repeating. Eph, my sweet little 9 year old baby, he is so confused and so heartbroken. This boy loves animals more then anything and is devastated when I mention how hard it is to find a place that will let us keep all of our furry and feathered friends. He didn’t sleep good last night. I wish I could shield him from all of this. He has had a few meltdowns today, which have been few and far between lately.

Autism and uncertainty do no mix.

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would love to credit this pic but dont know who made it.

You cannot expect a child who thrives on comfort and routine to understand that once again things have to change. I tried so hard to make this the last move of his little life. It isn’t fair, but life never is.

Before we moved here, River begged me to make it the last move. I promised him it would be the last place we lived before we were able to buy a house. I told the landlord we needed a long term place and she was great with that.

Yes, I am starting to see how this isn’t 100% her fault, but the way she is handling it is.

My babies are scared, I am scared.

I talked to the lawyer today. I have a few options but all of them end up with us moving as soon as possible. The landlord finally sent the notice in writing that she wants us out by August 15th. The Lawyer says I can fight, but the judge will see in my favor but also hers. Essentially if she can prove she cannot afford to make the repairs, then she can break the lease. If she starts eviction process, I will forever have an eviction on my record even if we win. So the lease doesn’t really protect me at all.

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would love to credit this pic but dont know who made it.

Autism is in full effect at home today. I don’t know how to make it better. I am trying to find ways to keep them as busy as I can. Move the focus to family time and not sit around and dwell.

Autism fixates.

It doesn’t matter what I do, Eph wants to talk about it all the time. He has so many questions I cant answer. He is starting to stash and hoard things. Rocks and pine cones and toys he hasn’t touched in a year. Becoming obsessed with these items associated with this house. He says he wont move unless it is just like this house. I can’t give him that.

It is so hard to not be able to provide for my kids the life they deserve. And I know people are trying to encourage me when they say “they are loved and that’s what matters” Love is amazing but it doesn’t keep a roof over your head or food in your belly. Love does not protect you. I can’t love them into a stable home life. I wish I could.

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I am trying so very hard. How am I supposed to make things better. I can’t work outside the house. I tried to start a business but that is hard and you have to have money to put into it and I used every dime I had and my mother put more money into it then she should have and It isn’t working.

I have no more options on where to go for help. So we have to move again. I have to find them a new home. Pray it is a safe home and somewhere we can stay until I finish school. A month doesn’t feel like enough time. And the money part scares me, I know my mom wants to help me but it is so hard to be dependent on your mother at 35.

Right now, tonight, I feel like a failure. In my life and for my kids. Autism is kicking my ass, Porphyria is holding me down. and life just keeps kicking the dirt in my face. What kind of mother can’t provide for her children.

So this is what life is

So I haven’t been updating as I should. So much has been happening. I haven’t even told most of the people I know and it isn’t discussed on Facebook. However this is starting to have a big impact on my boys and some decisions I have made. So since this blog is supposed to be about my boys and our lives, it is time to speak up.

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In march of 2013 I moved into the house we live in now. It is amazing. On 3 acres of trees with a creek and room to live. Eph has a huge yard to play in. We were able to finally accomplish some dreams. Get a dog to train to help Eph and raise chickens. The landlord was OK with me having chickens and rabbits and goats. Luckily I never went past chickens.

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Moving out of the apartment and into the house changed our lives. My health improved quickly. Eph loves having the space to run and play in the yard. I enroll the boys into an amazing new school.

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Lewis River Academy, is an interesting school. It is an online basis. The little guy has the K12 curriculum we do at home. if we need help he has a teacher in a building we can talk to. Plus every Wednesday they have a science class with other kids in their grade group.  The school also has outings and parties so there is opportunity for socializing. River attends the same school. He is using the APEX program at home online. He too has a teacher to help him when he doesn’t understand things. He was able to attend school in person 3 days a week with other high-schoolers.

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This school made everything change for us. If you have read any of my previous posts you would see what I mean. Through this school my children have made friends for the first time in their lives. Ephraim has been having sleepovers and we go to his friends house for dinners and we go out and do things together. Ephraim has never been so happy.  River has friends. This year he had an amazing birthday party and has had people come to the house to hang out with him. He has made so much progress and growth that would never have happened if we hadn’t found this home and this school.

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Even I have made some wonderful new relationships through these connections. Friends who have become very supportive and mean so much to me. This house has changed so much for us. Now it may be changing things again in a not so great way.

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The house is an old white farmhouse with a red tin roof. Built in 1925. So yes it is old and has had some problems. When we moved in we were promised a few things. The house doesn’t have doorknobs on most of the interior doors. Those were to be fixed before move on. and  we still don’t have working doorknobs. not even on the bathroom. I installed eye hooks for that one. I was promised a wood stove insert for the fireplace. She said they had it and would be bringing it out and installing it.

When October came around and things started to get cold, I called to ask about the wood stove. The next day she calls to tell me it appears someone stole the brand new wood stove.

Yeah, OK.

So she says she will find one for me asap. I mention that the fridge leaks water on the floor and she jumps on that and 3 days later I have a new fridge. A couple of weeks later the toilet backs up into the tub. I call her and let her know. I also mention the oven and dishwasher don’t work. So she sends out a friend. He pulls out the dishwasher and says it isn’t hooked up right, pushes it back in and does nothing else. He doesn’t look at the oven. Crawls under the house and says “well I think she needs a plumber”. OK. The plumber comes out, Runs his snake through the pipe and voila flushing toilet. No one ever comes back to address the oven or dishwasher and still no wood stove.

January comes along and our kitchen pipes freeze. Yay for a week without water. I mention that it is costing me over 300 bucks a month to heat the house and ask about the wood stove. She says sorry I haven’t found one yet. I remind her about the dishwasher, doorknobs, and oven and she says she will get back to me. Someone comes out and checks the pipes which thawed over the wait time.

February smacks into town and my kitchen pipes not only freeze, they burst. Someone comes and fixes it. Still no door knobs, wood stove, oven or dishwasher. Honestly, I am being really patient and chill because I don’t want to be a bad tenant and I love the house.

March 2014 rolls in and we sign the lease for another year. I again mention the doorknobs, dishwasher and oven. I have given up on the wood stove and figure I will buy my own. I am just glad we have another year to live in this house we all love so much.

The first week of May, the toilet backs up into the tub. We can’t flush or run any water. Even using the kitchen sink makes sewage fill the bath tub. A plumber comes out next day and says the tank needs pumped and recommends someone. They send a plumber out the next day who say that it is a water flow issue and they dig a trench  to divert rain from gathering in a certain area. They also send out someone to pump the tank the next day. So that Saturday we happily clean the tub and we can again shower. Everything is good for 3 days and then it backs up again.

So apparently the problem is the drain field needs to be replaced. Landlord calls me and says she cant get anyone to fix the tank and field because of the age and the whole thing will need to be replaced. Luckily we have a camper we can use for bathroom needs. It is a big inconvenience but I am trying to be understanding.

A few days later she says a contractor will be coming out to inspect and get blueprints and all this stuff by the end of June. Now this is mid May. But hey work can go slow sometimes and she swears she is on it. June 27, my patience has worn out. I call the landlord, no answer. June 28, I call the landlord, no answer. June 30, I call the landlord, no answer. July 1st I get home and have a voice mail on my land line. It is the landlord.  I will write exactly what she said.

“Hi Domoni this is ******, I’m getting back to you in regards to the septic. Um, unfortunately I’m having to put the house up on the market because I’m not able to get any assistance in getting it fixed. It’s a pretty major operation where it’s costing alot of money so I’m, I’m still searching for some assistance I wasn’t able to get it. Unfortunately I can’t have somebody in the house. Um it has to be owner occupied, that’s another blocked wall I am running into. Also, I can;t have you guys in there ya know health wise. So I um am gonna have to give you guys a 30 day notice. Um, i will try back again Um it’s been a long month trying to get this resolved. Give me a call back, I don’t have good reception on my phone here sometimes so if I miss your call I will give you a call back. Bye. ”

So yeah, firstly I have a year lease till March. I don’t think she can just decide to sell the house and not fix it and give me 30 days notice. But this is devastating to me. I am going to try and fight this. But even if I do and win we will lose this home eventually.

Finding a place to live won’t be hard. Finding a place to live like this will be impossible. We are accepting that we will have to get rid of the chickens.  Probably the cats and at least one of the two dogs. Well I am accepting that will probably have to happen. My kids though, not so much.  Ephraim has been in massive meltdown mode lately and River isn’t doing so great either.

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Telling an autistic child they have to move again sucks period. Tell them they have to leave a place they love this much is awful. Telling them on top of that they will probably lose their animals is beyond heartbreaking. Ephraim screams and cries and begs me to promise him that he can keep them. How can I promise him that when we have such limited options.

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I am beyond poor. I can’t work. My 18 year old cant be home alone for more then 2 hours. Ephraim could never handle going to a daycare. And what daycare places would even take an almost 10 year old who still wears diapers and becomes violent towards himself when he is upset. So we live off the small amount of SSI I get for River and the inconstant measly child support the state takes from little dudes dad. Add in a mom who does more then she should to keep us going and we have gotten by. When I finish school things will turn around I know. But that is 4-5 years from now. And right now, I need a place to raise my kids.

We live in a small area and there is very little available here. The apartments are only two bedrooms and we need 3. Most wont allow the one dog I refuse to give up because she will be Ephraims lifeline. If we have to leave our area, it will be devastating.

Moving away from t he kids friends will break their hearts. They have never had friends before and I hate the thought of doing that. Plus we have good Doctors here and that is actually a big deal. And the school. That is the big thing. I have to be close enough to continue using this school.

Right now, I have so much anger. What kind of person would just say sorry you and your kids have to get out. You didn’t do anything wrong but I am going to illegally evict you. Over a friggen voicemail no less. She knew we wanted a long term home. I dreamed of buying this place myself. There is no way I could do that now with how limited our finances are. I mean I can barely keep our utilities on an am scrambling to get my electric paid again this month.

Underneath that anger is an extreme fear. Having to find a home is hard enough. Knowing how hurt your kids are by it is awful. Watching your child already slip and start to regress from the ordeal is cruel. I had really thought we could turn our lives around. And now I am at a loss.

So, because I can’t even fathom the idea of it working, I have taken down all the Lego Land fundraiser stuff. It wasn’t working anyhow. We used the original donations for his birthday party and I don’t feel as though I will be able to get it going better. The people who helped us, I thank you. You all gave River a birthday he will never forget and that was fantastic.

Now I have to focus on how to fight what is happening and find a new place to live. Maybe that powerball ticket will go my way, but that is never going to be my luck. This is just the way life goes. I am waiting to hear back from a lawyer about what my rights are. The reality though is that my heart is breaking for my sons, for our dreams and for the first place we all ever felt was our home. I am barely holding it together right now and I hate that these things keep getting thrown at us. I am just doing my best to not fall apart in front of the kids. Trying to keep myself positive for them, but that is not easy.

So if you are a praying person, we wouldn’t hate having extra love thrown our way.

Always Love,

Domi

You can learn more about us and what we are doing athttps://www.facebook.com/Riosdreams

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

Happy birthday River

Today is a good day! River finished his last final and is done with school for the year. He is super proud of himself and so am I. He is now moving on to the portion of the day known as “do whatever the heck I want cuz its my birthday yo”. He got a couple of his presents today and will get a couple more at his party Saturday. So he is very excitedly checking out his new Halo Wars game after jumping around all excited to see he now has his own xbox gold set up and we got him a headset for online gaming. I doubt he will be out of the living room all night.

18 years, it is hard to believe. I was younger then he is now on the day he was born. I was a dumb kid, let me tell you. Everything changed when he came into my life. Before he was born I had to turn things around. It wasn’t easy and even in that first year of his life I had no clue what I was doing. Do any of us though?

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I have never for one second regretted having him or the changes I had to make. I never regretted having to make the choices to put him first. He still struggles. He has a rough hand in life. He is growing every day and I don’t think I could ever be more proud. Being an autism parent is not something I ever planned but I am glad that I get to be his mom.

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