Where did we go?

miss me

So, I wrote up a big post about how I wasn’t going to let people get to me. I said I was going to bring back my blog. Then I didn’t post again. So here is the deal.

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The day after I wrote that, my landlord showed up and informed me he was putting the house on the market. So I was once again preparing to be forced to move and find a suitable home for me and the boys. Of course I was devastated. As I covered last year, moving and uncertainty and autism do not mix. Plus River was devastated as he is graduating this year, this week now. I also did not want to bring all of that back onto the web and receive more criticism for the way I live.

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Recently my landlord changed his mind and asked us to stay. He asked if we would be willing to have a small rent increase if he pulled the house off of the market. I of course jumped on that. We can pay a little more each month, it won’t add much difficulty to our living situation. I am employed now and we are getting by.

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Choosing to live a life and share it with strangers is difficult. You open yourself up to criticism. I don’t have a thick skin. When things started falling down again, I pulled back. But we are back to good and that is where we shall stay. So thanks for sticking around and reaching out to those who asked after us. I will be here again. In fact I am writing a second blog as I write this one. ūüôā so…… Stay Tuned!

stay tuned

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

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

Asperger’s and violent behavior

Recently there has been talk and speculation linking some very serious and horrifying acts of some young men,¬†with asperger’s. I do not know those boys. I cannot speculate on if they were struggling with ASD or not. I also will not name them, you probably already know who they are, I will not add to the fame they have achieved through these violent acts. I can however talk about my experience with boys with asperger’s/autism and why all of the speculation terrifies me.

Telling the world that asperger’s and autism cause violence is wrong. Giving people the idea that they should fear our children. Children who are statistically shown to be more likely to be a victim then a perpetrator. Though it may be true that young children with ASD show violent behavior assuming that means they will grow up to be violent offenders is wrong. I have known NT children who throw some pretty epic violent tantrums, no one assumes they will be a danger to society. Why do you assume that a child like mine will be.

When River was in the worst of his battle we had only just gotten the diagnosis of asperger’s. At 8 years old he was brilliant, withdrawn, occasionally violent, scared and sometimes very scary. I didn’t understand it all then. All I knew was I had to help my baby come out of the dark place he was in.

When life got too hard for him, River reacted violently. Daily, I would have to restrain him. Literally wrapping my whole body around his little body and hold on for dear life. I would always get my arms around his torso and pull him backwards until I was up against a wall. I could slide down the wall into a sitting position and wrap my legs around his and just hold him as tight as I could. He would thrash and scream and bite and pinch and scratch. He would say terrible things and I would just hold him tighter and try to talk to him calmly and tell him I loved him and that it was going to be ok. I would cry sometimes and sometimes I would scream right along with him. But I never let him go. I never let that darkness swallow him. He always came out of it.

From the time he was little holding him tight calmed him. Wrapping a blanket tight around him and putting a leg over his leg and my arm across his chest was how I got him to nap or sleep. I never held him too tight. I never hurt him. I wrapped myself around him and eventually his breathing would match the slow pace of mine. As life progressed and I learned more about ASD, I learned that the pressure and weight on the body often has a calming effect. Holding my baby became the only way to reach him when life overwhelmed him.

For a child with ASD, sensory overload is often a trigger into a very dark place. It can happen anywhere and is sometimes easy to anticipate and sometimes  out of the blue. The everyday stimuli that NT people walk through with ease are an assault on a child with ASD. I have watched both of my children fight that war. Constant beatings from the noise and the lights and the smells. The way the tag on his shirt keeps scratching his neck, the way the seam of his pants rubs against his calf. Such minor annoyances that an NT body would adjust to and ignore after a few minutes become the slushy flakes of snow piling on the unstable side of a mountain in spring.

Can you imagine spending your whole day being screamed at and scratched and blinded while someone follows you around with a freshly sliced onion. Now ratchet that up times 100. This is how I associate to the excess sensory stimulation my boys have lived with.

It is hard for me to figure out how I could handle doing anything but scream.I know when I have had enough noise and need some quiet time I get pretty cranky. I don’t have trouble processing sensory stimuli though.

This over stimulation was pretty much always the cause of River’s extreme outbursts. He would get to a point where it was just too much. So he would hit me and I would hold him. He would scream and I would whisper. He would thrash and I would rock him. He would calm and we would cry. He would tell me how sorry he was that he hurt me. He would tell me he couldn’t remember it all. He would tell me how much he hates to feel that way. We would lay on the floor, me and my beautiful 8-year-old boy, the little boy who saved my life, and I would tell myself over and over again that I would not stop until we found a way through this.

After the screaming was over and the crying had stopped, that was when the work started. We spent years with therapists at Easter seals. Teaching us to see the signs. Giving us coping tools and a better understanding of what to avoid before the meltdown. Many meltdowns earned River consequences. Not because he got in trouble for falling apart, but because this was how he had to face and learn about what he was doing that could have kept him from having those meltdowns.

With time he learned. River has grown into an amazing young man. Yes he is still struggling. He doesn’t understand the world but, he has gotten to where he pretty much understands himself. When River has had enough, he can sit and calm himself. He can handle the excess noise and will put on his headphones to drown it out. He can handle the crowds, the smells and the heat. If you saw him wandering around somewhere you would not see his struggle.

Asperger’s still keeps him on his toes. He still has trouble talking with people and he may not want to be around a big group. When he has had enough he will let me know and that is good. River has become very nurturing. He hangs out with and is protective of young kids. He lately has really been bonding with a little girl who is living the struggle of ASD everyday and he seems to have a calming effect on her (more on that in another post).¬†He is calm and kind would never hurt another person.

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River and his charge (they are bonding in a way that is good for both of them)

I am not saying the way I raised him is THE RIGHT WAY to raise a child with ASD. It was our right way. We grew together and learned alot and go to a really good place.

River is actually a pretty good picture of what a young man with AS is like. I have met quite a few.  A large part of who they become depends on the same basics that guide every childs development.

Have they been loved?

Have they been nurtured?

Do they have a stable support system?

Are they being taught wrong from right?

Do they have consequences?

Are they loved? (Yes being loved is important enough to mention twice.)

Without those basic needs being filled any child can become a monster.

Lastly, please stop lumping ASD’s in with mental illness. Autism is a neurological disorder. There is no little¬†pill to manage it. It is just a brain that works differently. Yes there are underlying medical conditions. These need to be addressed. ¬†Yes sometimes therapies can make a big difference in their lives. Our children are not mentally ill though.¬†Many of the people who have committed these atrocities are mentally ill. That needs to be addressed in our country. Shifting the blame to a disorder that isn’t understood in the community at large only incites fear in the ignorant. Please learn about ASD.

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

Proud Momma share

Happy quick little note today. The Little Dude completed school for the year. Aside from one more in person science class next Wednesday all of his school work for the year is over. Next year he will be doing 5 grade. YAY! He is of course super happy about getting to move over to the summer sleep schedule of staying up an hour later and sleeping in, which makes me giggle as I almost never wake him up early or even at all. One of the perks of homeschooling is we start when we feel like it. So hooray for the Little Dude on finishing school 3 weeks early.

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Now to the Big Guy. He came home in a great mood today. He has completed his history course for the year, including the final. Which he was super happy to say he only missed 2 questions and one of them he said was he accidentally clicked the wrong answer. Either way only missing 2 questions on a final in a course he somewhat struggled with this year is fantastic. We are so super proud of him for this. One course down and getting very close on the others. Seeing him come home from school so obviously proud of himself made this mommas day.

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Tomorrow we all get a break and are going on a field trip with the school to OMSI to see the dinosaur exhibit. We are all excited for this one and to spend some time as a family in a place we love. This mom is super happy and really needed this day. It makes everything a little lighter when the kids are so exuberant. Perfect ending to a long week.

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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