Please take a moment and read this. Share this. Spread it around if you can. 2 weeks to sell 500 shirts is a haul, but I believe in people and I know that they can help.
family
My baby made it, guess he isn’t a baby anymore.
19 years ago today was when the best thing that has ever happened to me occurred. River was born a tiny little perfect person. Pink fingers and white hair and blue eyes that everyone said would change when he got older. It took us years to figure each other out. Me the stupid 17 year old kid who definitely didn’t have shit together and the baby that never liked much. We couldn’t figure out breastfeeding, I couldn’t figure out how to do it all. His tummy seemed to always hurt, we still haven’t figured that part out. He cried and cried and cried, unless I popped in some social distortion and bopped around the apartment. He changed every moment of my life and every fiber of my being.
River has fought tooth and nail for most of his life. From the horrible “colic” he had as a baby, to the inability to connect with other little kids at 3, the getting constantly penalized in kindergarten for questioning the teacher, getting kicked out of first grade, 2nd grade and third grade for elopement and shutting down. Arrested at 8 because of abusive teachers aides who shouldn’t have had a job with children. It just kept going and going and he just got so lost under autisms weight.
Removing him from school and teaching him at home was a break through, though I could never have gotten my son back without the help of the amazing people at The Childrens Guild Easter Seals therapy program in Salem, OR. I hear they had to close their doors due to budget cuts, which breaks my heart. The program of intensive therapy for River, Me and us as a family unit was what saved us. Teaching me how to help him, teaching him how to help him. All the tools we needed were delivered. No, it was not a cure. We know he will always struggle, but the tools they taught him gave him the ability to live in a world that is unaccepting, unforgiving and gosh darn loud.
I was told once that I should institutionalize my son. That his aggression would make him a danger to everyone around him. That he would never function as an adult, they said he had no chance of finishing school. They were wrong on all counts. River completed his last final of the year today. He is graduating High School on Thursday.
River still battles his autism. He still takes things rather literally and still has tics that appear when he is stressed. He is more sensitive than other kids at times and he can rarely fly off that handle when pushed. But now, he has the tools to confront those stressors. he knows how to slow his breathing and calm his bodies. He knows that home is safe and always will be.
River volunteers every week at the local food bank and thrift store. The experience he has gained from working there has helped him grow immensely. He goes in and works like it is a normal job. They understand him and his needs and they support and encourage him. He is corrected firmly and kindly when he struggles. He has learned how to handle the stress of a job, which gets him pretty close to other 19 year olds maybe even past some in my opinion.
Today, my baby boy. The child who saved my life, turns 19. He may not be ready to leave home and take on the world, but he proved all those jerks wrong. And that is pretty dang cool in my opinion.
So thank you to Easter Seals. Thank you to the amazing teachers at LRA. Thank you to The Action Center. And thank you to every single person who has impacted our lives. We love you and we thank you.
Now if you are in the area and know us, come party at the park with us Saturday. This boy deserves to be celebrated.
Where did we go?
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.
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.
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.
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. 🙂 so…… Stay Tuned!
Hello Strangers
Hello again. I know it has been a long time. The last seven months have been busy, emotional, wonderful and stressful. Ok so basically they have been normal. 🙂
We have settled into lives in the new house. The kids love the space and being so close to school and friends and the park. It has opened up more opportunities for our family and that has been nice. I have been so busy that half of what we own is still packed in the garage though.
Sky and I being goofy.
I am going to be perfectly honest. I haven’t updated the blog in months mostly because of the wonderful commenter who tried to shame me. She failed in making me feel ashamed of asking for help. She did, however, make me want to pull back from opening myself to it happening again. That attitude was letting that persons poison win and I no longer want to do that. I need this blog. I need to be able to share my feelings, fears and pride with the world. Even if noone reads it. I need a place to put it. There is so much more to our lives that I can’t express at home.
So, moving right along. This is where we are.
River is in his senior year of high school. This has so many mixed emotions involved in it. He is struggling with realizing the school year is coming to an end. He loves his school and hates change, so I know how hard the end of the year will be. Also involved in this is preparing for public engagements.
River at the Vancouver Menorah lighting for Chanukah. The last time he had a highly successful public outing.
Today he had a practice presentation for his senior project. He has to talk about volunteer work he did this year and its impact on his life. He came directly home from school very upset after his presentation. Instead of staying for the day of open studies, he made the choice to walk home and let himself decompress. Seeing him so overwhelmed is very hard. Public speaking is never going to be easy for him. Upside, he got through it. He said he broke down in tears a few times and got flustered, but he made it through. So this week I will be drilling him on it all week to get him really ready for the official presentation next week.
River has been going to youth group at the church on Wednesdays too. Which he chose to do on his own. He enjoys it, but admitted to me this week he doesn’t really talk to anyone there. I hate that he still has no friends no matter what I do. He just doesn’t know how to approach people or how to interact with people who approach him. He tries though and I couldn’t be more proud.
Mr. Man turned 18 last summer, so he got to vote.
Sky is flourishing. He loves going to school and being with his friends. He has taken up writing fanfic and creating his own Minecraft skins and artwork. Sky joined 4H and is raising guinea pigs. He loves animals and enjoys getting to be around other kids. He is thinking about joining scouts with his best bud too.
Little dude got a new hair cut.
Little dude still has alot of anxiety though. His health is still a problem that we are working on. That will probably always be the case though. The kid is tough though and I know my little fighter will come through it all.
As for me, I am still continuing my schooling. Getting good grades and trying not to get burned out. I am providing childcare full time for my friends two kids and that is alot of work. I also am involved with my book club Fangirls Read It First. I review books, edit other members reviews and help run the public Facebook page. It is fun and a good outlet for me that has nothing to do with my kids. We all need something like that.
So I aim to have this back up and regular. our little family will continue its growth. We won’t lose sight of our goals even when autism, money issues and life in general kick us down. We are fighters and we keep going.
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.
Our littlest Thalia will be going to her new home this week 😦 🙂
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.
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.
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.
Eph is pretty angry at me about having to let her go 😦
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.
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
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.
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.
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.
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.
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.
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.
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.
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.
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.
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
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.
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.
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
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.
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
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.
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.
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.
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.
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!
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.
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.
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.
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.
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.
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
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Building Blocks for All Their Dreams 