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 He has a lot more attitude and is more withdrawn.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

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.

river baby

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

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