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

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

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Having a night.

Feeling pretty defeated right now. The house hunt is not going well and time is ticking away. We had a place where the guy made me feel like I was going to get it but then tells me there is an applicant ahead of me and he approved them. I feel toyed with. And considering how I got into the house hunting situation that isn’t a great feeling.

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Our littlest Thalia will be going to her new home this week ūüė¶ ūüôā

Our situation just sucks. It is near impossible to find someone who accepts cosigners. Apartments really don’t like it. I just don’t make enough money to do it alone though. I am starting to get really scared and desperate. We will probably end up living in the camper. That isn’t a horrible thing, except the age of the camper means parks wont accept it for monthly stays. So again we have to find somewhere to park it.

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Eph getting tired with his pup Lovely waiting on a house viewing that didn’t work out.

I am struggling to stay positive. The kids are having a hard time too. Ephraim has been crying off and on for the last hour and I can’t even figure out why. Today was pretty easy for him, he just hung out with Grandma, but now he is an emotional wreck headed for meltdown city.

Which is only going to get worse over the next few days. We are starting to thin the herd here. Yesterday I put word out to rehome our tortoise shell kitty and a friends grandma is going to be giving her a new home. Tonight, I have to put it out there to rehome Ephraim’s kitty stormy. He is not thrilled by this as you can guess. Every conversation we have had about that has gone very badly. ¬†My parents are taking on the chickens, so that is at least one worry that I don’t have to deal with now. Eph was not a fan of getting rid of them wither. I hate having to break my kids hearts over and over again.

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these two have been near inseparable since we got her.

This whole thing just sucks. In less then a month, we will most likely be homeless. That is how it is looking right now. I am bouncing back and forth between anger and despair. This is not how children should be raised.

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Eph is pretty angry at me about having to let her go ūüė¶

We had River’s social security review today. The transition over to his own file now that he is 18. I was pretty nervous about that, but it went well. Now we just have to wait and see if they are going to decide that because he is 18 his disability has suddenly disappeared, because yeah, that is how autism works didn’t you know.

We are still trying to figure out Ephraim’s disability and we just started the process of getting me approved to provide childcare for a friend. If that all goes smooth, I will actually have some money coming in and wont be so stuck. but of course I can’t make any of that happen before the deadline for moving is here. So it doesn’t really help right now.

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oh yay

I am tired of crying. I am just so tired. My birthday is in less the 2 weeks. So hey universe, could you please cut me a break.

Always Love,

Domoni

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

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

Age is just a number in autism land.

Realizing all of the progress the boys have made is a great feeling. Seeing how far they have come and how much they have overcome keeps me going on the bad days. They have overcome so much that sometimes I forget that there is still much to work on. Yesterday was one of those days where I messed up,  a kick in the gut that made me feel like a horrible mother.

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Beginning of the month shopping trip needed to happen. Add into that, River’s birthday is tomorrow and I had to go get stuff for that. So without thinking about it I packed Eph up into the car and told River I wouldn’t be gone long. He was immersed in his computer game and seemed good to go. So at 12:30 PM I pulled out of the driveway.

We live a bit rural. We are 30 minutes from town and an hour from Vancouver. All the shops I wanted to go to were in Vancouver. So We headed down I-5 and hit our first stop, the Ocean King seafood market. That took about 15 minutes then we headed down the road to Gamestop. We were there about 30 minutes. So it is now about 2:30 and the phone rings. River wants to make some lunch and I give him the go ahead, let him know what he can have and that I am not quite halfway through the shopping trip.

Our next stop is Costco. This trip was about an hour, the store wasn’t packed so we got in and out easy and headed off to Winco. At this point I am tired and Eph is tired so we hurry through and are out of there in 20 minutes. Now it is about ¬†4:45 and we are heading back north.

Have you enjoyed my itinerary so far?

The point is, this wasn’t a long trip for all that I needed to get done. For a Saturday, things were smooth in all the stores. I thank the amazing weather and the free fishing weekend keeping people out of the shops.

Halfway home my phone beeps letting me know I have new voice mail. OK I missed a call, no big deal I will check it when I get home. The cell service on the way to my house is spotty. It worsens the closer to where I live and then goes out completely. I live Rural remember. another 5 miles and another voicemail beep. ¬†Odd, my cell doesn’t get that many calls. Another 5 miles and the phone rings. I am not at a point I can pull off the road but I notice it is the home phone and so I try and answer. It is garbled and disconnects. I try and pull off to call him back but there is no service. I am about 15 minutes from the house, so I decide to just push it home.

I got a pit in my stomach. This is actually the longest he has been home alone. Normally I do the shopping with him in tow or while he is at school. I assume the voice mails are him and since he called I am certain he isn’t in grave peril, but I am realizing he is upset. That pit in my stomach grows as the minutes tick by. When I pull into the driveway my phone links up to the house WiFi and I get a text, voice mail beep and Facebook ping all at once so I know River called grandma.

I get in the door and he is in tears. He just says you scared me and goes out to unload the groceries from the car. He won’t really talk to me as he brings items in from the trunk. He says you were gone a long time and you didn’t answer the phone. I feel like a horrible mom for multiple reasons.

I scared my baby. I made him feel frightened and alone. I forgot for a moment.

I forgot that his age doesn’t equal his independence level.

I forgot that his age doesn’t mean he doesn’t get scared.

I forgot that he has never been alone more then 2 hours.

I forgot how easily the anxiety can ramp up in him.

I forgot that all of his growth doesn’t take away the autism.

I scared my child. I scared him to panic and tears. He thought we had crashed the car. He didn’t know if we were coming home.

He remembered to call his grandma in the event he cant reach me and that is great. He shouldn’t have had to do that though. So no more long trips into town without him. No more forgetting how much he needs me. I feel like a horrible parent for the pain, fear and tears on my sons face yesterday.

River will be 18 in the morning. That doesn’t mean he is grown. That doesn’t mean he is ready to be treated like an adult. How could I forget and scare my baby like that.

It sucks how guilt can punch you so hard in the heart sometimes.

Always Love,

Domi

 

You can learn more about us and what we are doing at

https://www.facebook.com/Riosdreams

donations can be made at:

http://www.youcaring.com/other/building-blocks-for-birthday-dreams/151773

and purchases can be made at:

https://www.etsy.com/shop/RiosBdayDreams

 

 

The Chicken Chick

 

Dealing with life

So I haven’t been very active online lately. Haven’t been blogging for this or for my work. I needed to pull myself back and tend to some personal things. I started school and it has been taking much of my focus. Things have been rough around here in a few different ways. I feel bad though because I need to focus and push through all of this. It is time to start planning River’s birthday party.

I can’t believe he will be 18 in less then a month. I worry because we have had very little success getting people to show up for things. My mom is usually there but I can’t depend on anyone else. I am terrified he won’t have a good day. We had started the fundraiser for Lego Land and have raised around $450. Not nearly enough for legoland next month. After discussing things we are going to use a little of that money for a bbq at home and continue to fundraise until I can make the kids dream come true.¬†

We have never had good luck with parties. Aside from my mom people don’t tend to show up. He wants people to come and I want people to come, but I can’t make them come. Last year my boyfriend at the times family ¬†came and my friend brought her family but noone River invited came and past relationships being past means I can’t expect those people to come. I expect ¬†that it will be another year of just my mom and pops. And it breaks my heart.

River wants friends so badly. I can’t do anything about that. He went to a school this year with other kids but he didn’t make a friend. He just doesn’t know how. I have tried to set things up but they fall through. People who have been in our lives for years can’t be depended on. I just don’t know how to make it better for him.

So I am praying that this year won’t break his heart and that I can eventually save and raise the money for the LegoLand trip. I just need to buckle down and push things out. I have been flaking and I can’t do that anymore.

So this is me, shaking it off and moving forward.

Always Love,

Domi

 

You can learn more about us and what we are doing at

https://www.facebook.com/Riosdreams

donations can be made at:

http://www.youcaring.com/other/building-blocks-for-birthday-dreams/151773

and purchases can be made at:

https://www.etsy.com/shop/RiosBdayDreams