FINALLY!

I finally found the program we have been needing! Advance Crisis Solutions in Chico is AMAZING! We haven’t started working with them just yet but we did out intake yesterday and I cried like a baby. All their respite professionals are trained in ABA and other hands off preventative techniques and they will receive these services into adulthood! So long as they need it, even into their future, potential placement for when they’re much older if I could no longer care for them. It’s just the most amazing thing I’ve ever heard of. That combined with CBEM providing additional support services and working with the girls in home should amount to some awesome progress and overall improving ALL of our quality of life. I’m absolutely overjoyed and feeling very blessed that this exists, we finally got a reliable Far Nothern representative to connect us with the right people, and now there is just feeling hope and excitement for the future. For the other special needs parents out there, hound your representatives and figure out what will work for your family because I couldn’t have imagined something like this exists and after searching and so much hoop jumping we finally have something that will help us. It’s been a year since I started doing this all on my own, no child support, no time shared, just me. It’s so hard feeling that helpless and physically outnumbered. Take care of your single parent friends!!!

Family Is Complicated II

Sometimes you have to hit them with the truth to break the illusion. I don’t know if this is the case with my mother and this blog or if somewhere in her she had a change of heart. I asked for her help again. This time in a text message. Talking always seems to go badly with her. She responded with actions instead of world and it was an interesting interaction but ultimately I think everyone felt good in the end.

I texted asking for fruit and some small groceries for my girls. It was a week long break from school and these kids can literally eat the whole house if I let them. Instead of responding she showed up at my front door. This is a violation of our boundaries but because it came with an olive branch I’m “supposed to” forgo the disrespect. I’m supposed to be grateful and appreciative and quiet. She came and picked up my eldest and took her to Costco, spend hundreds of dollars, returned with mountains of food and supplies for us, unpacked everything, and left as quickly as she arrived. I asked if she intended to stay or spend time with the girls and she said she needed to get home to put her groceries away. She didn’t hug me, she didn’t say bye, she just left.

I feel like this is her way of showing love. Maybe she is learning. Maybe she feels guilty. Maybe she has hurt feelings that she can’t express to me. I don’t know. I’m grateful but also confused. Family is certainly complicated.

Trusting My Gut

The holidays keep my hands busy so writing got pushed to the back burner. So much has happened and I am learning to trust myself more then ever with my decisions as a parent. I’ve adopted the “If we are late, then we are late” outlook which allows me to accept the reality of my life and allow accomodations for that. I am a single person and parent of 3, two with special needs. I’m outmatched but somehow I am always on time for things and very rarely late, as a result however, sometimes I’m over stressed and I take it out on myself and the kids. I don’t like the version of myself when I’m striving for perfection or even keeping up with the norm. We aren’t the norm, and that is okay to admit. We will try to be on time and keep a schedule but I am not going to let it make or break our peace to stick to it. The world is hard enough.

I had a realization after our last elopement that changed everything. I was not the one that left the door unlocked. My eldest daughter let her uncle in the house and left it unlocked. I couldn’t figure it out on the day and barely slept that night. Then it hit me and I remembered, I didn’t even open the door. So I had a hard conversation with my kid about safety and the serious concern for her sisters getting onto the freeway by our house. I know she didn’t mean to “forget” but she would never forget it if something happened to one or both of her sisters because of it. I realized that I need to take security in my house more seriously, and not because I don’t have cameras and alarms. I need to take security training with the people in my life more seriously. I’m working with a company on Crisis Intervention as well as getting the girls back into some emergency ABA therapy. We have been on wait-lists for quite a while but our small town has a flux of autism and almost every company has months to years of waiting. My oldest spent this Thanksgiving break at home and we just focused on remembering how things work at home and double checking things like door locks. Even though it was a “your grounded” situation I enjoyed just having her home and with us. She spends so much time with other family and friends I miss out on so much of the good stuff. It’s a hard balance being the authority parent and the fun parent and trying to make sure she doesn’t grow up with the same insecurities I did. I want her to feel supported and loved. I think she would learn allot from spending more time with her sisters. I want to give her everything in the world but there are also lessons in compassion and resiliency that could benefit her in the long run that she has available to her right here at home.

So we will probably be a little late sometimes and my children might not grow up like other kids do but they were never meant to grow up like other kids. Just like my oldest could end up being some beautifully compassionate person who helps others and cares for them because she was raised around those with special needs. She will understand so much more of the individual life experience, connecting when it is hard to communicate, and being a human being. I want her to better this world and not get lost in the hype. I want to raise morally good human beings and I think that is something that has been lost on people, in my country anyway.

Keeping My Center

When we have big events like yesterday I am reminded to reflect on all the wonderful things these girls are. They are someones sister, friend, daughter, student, patient, and peer. They are a part of a beautiful community that tries to celebrate them as best they can. They are an artist, fashion icon, superstar, and space traveler. They have big imaginations and love music and dance. They have big hearts and love snuggles and cuddles with their close people. They show love, sometimes when you least expect them to. They have compassion! Sue is the “Steven she wants to see in the world” (iykyk). Moo is “My Queen Bean!”. These girls are loved and irreplaceable. I hope we can find solutions soon to further their safety at home and in the community. These girls deserve to be seen and deserve a quality of life.

Another Big Scare

Today the girls eloped from the house again. I forgot to lock the deadbolt key lock, I only locked the combination bolt, when I took the garbage out earlier. It only took minutes for them to be outside and down the street. I got a knock on my door from the police. Any parent with children who elopes knows the fear that hits you. My girls are opportunists and as loud as they can be when they are expressing themselves, they can be equally as quiet when they are trying to be sneaky. I wasn’t behind a closed door, just out of eyesight long enough for them to undo the front lock and leave together. This is a huge part for why I am trying to install the automatic gate across the driveway. We have built a fence across the yard but that really doesn’t prevent anything. I have changed up our front door locks almost half a dozen times to prevent them from escaping. I can put all the parameters in place but if I don’t aim to be ten steps ahead of them I will be under prepared and it could have severe consequences. It’s absolutely heartbreaking because there’s the fear, panic, and upset when you realize they aren’t where you left them and gratitude when you find out they’re safe and self resentment for letting them evade you again and put themselves in danger! Sometimes all these emotions happen in a matter of minutes. It is exhausting and really takes it out of everyone including the girls. Moo came home and laid down to take a nap. Sue is watching her movie pick for the time being and I’m absolutely on edge now, every sound in the house makes me nervous and I’m hovering around and can’t relax. They say that parents of special needs kids develop PTSD similar to war vets because of all the stress they have on a daily basis. The feelings are very real. One of the officers on the scene was telling me how if he were in my shoes he would make sure someone was watching them at all times since this appears to happen rather frequently. I assured him I will do everything I can to insure their safety however, I’m only one person, and I have been searching for a reliable respite worker. I posted the job listing on Care.com, at the local college, at their weekly program, I even gave the information to the people at their school. Anywhere and everywhere I can think to I have put the word out to find myself some reliable help. I have done interviews and had individuals inquire but nobody has stuck around for the amount I have to ability to pay, which is fair. I have recently gotten in touch with a new program CBEM(Creating Behavioral+Educational Momentum) that is going to help us get multiple trained workers to come provide respite, which will be AMAZING! They also help with safety concerns and working with training parents in home to help their children as best they can. All these things take time. I work from home and I’m doing everything I can, I wish the local PD had better sensitivity training for situations like this. It isn’t across the board but there’s always one that just makes you feel judged and threatened. I am always very respectful with the police but I know my rights and I don’t require someone who has no premise of what my life is to tell me how to handle it. I’m not superhuman. I’m just a single mom doing my absolute best. I hope everyone has a better day today. This morning has been too stressful.

Sunday Funday

Some days are harder then others. This is the last day of a long three day weekend with the first real cold weather other the year for us. The twins usually spend a good amount of their time outside which helps with their sensory needs as well as exercise. Without being outside they become restless. Its not even 9am and we have had multiple meltdowns today already over the TV, changing clothes, clothes they wanted to ware needing to be washed. Waiting is not their strong suit, but we are working on it.

I’m going to refer to the twins allot in these blogs as, well, they are the starts of the show. So I think I will use the names Sue and Moo when referring to the twins. I care about keeping their lives semiprivate but I also want to be able to talk about their conditions separately.

Starting at 7am Sue came into the room I sleep in and turned on the TV which is not something we do even on a weekend. Usually we need to get clean clothes, change pullups, and be ready for the days events before we can watch any TV. She wasn’t happy but we made it through with minimal fuss. She is capable of dressing herself with verbal prompting and some help occasionally. Once she was ready I tucked her into a cozy chair with her Troll toys and she was content. Then her sister woke up and the chaos chaosed a little while juggling between the two. Moo was wearing a double layer of bathing suits that got wet in the nighttime and needed washing. While reluctant we talked though it together and I got her to relinquish the dirty clothes. “It’s hard when we can’t wear the clothes we want, I can relate, but this is dirty and we need to wash it before you wear it again” These are the short kinds of conversations I’m practicing with the girls. I have a short threshold for being screamed at. Typically I will try and walk away when I get overwhelmed but that doesn’t help the girls get through their behaviors. I stayed with Moo and tried to put on a show she asked for but she was still fixated on the clothes and it started a tantrum. She went from whining to crying to smacking her face in a matter of seconds and I had to go put her in her room for a calm down. When they are heavily escalated it is hard to get through to them. After she calmed down a bit I got her back into the TV room and gave her a cozy blanket and she picked SpongeBob which caused Sue to get upset because it wasn’t her first choice. I whisked Sue off to the room, away from the stimuli that was upsetting her, and gave her snuggles for a few minutes until she was fine. I should also point out that Sue likes SpongeBob too, she just didn’t want it at that moment. These kinds of things can make it challenging when navigating two nonverbal kiddos at once. They might like the thing you’re offering and just not want it at that time. Being unable to voice that accurately can be incredibly frustrating if you don’t have alternative communication tools on hand at all times. We use several forms of communications with these girls. They have some sign language, visual aids, PEC’s, AAC devices, and even some words when they can focus. There really is so much they can do when their environment is set up for them to succeed. The morning continued with minimal complaints and the crisis was averted. So this morning was an example of maybe a 4 out of 10 on the crazy scale. I think the hardest part of my job as their mom and caregiver is that I’m only one person. There aren’t enough hands for three kids but I make it work somehow. We are ready now to start breakfast!

Family is Complicated

Today I had an emotionally big conversation with my mother because I dared to ask for her help. Everything from her comes with a cost. I asked for help with buying wipes and toilet paper and the response was “Is this a hand up or a handout”. I have to believe that most families are not like this. I struggle because I’m a single mom with no child support and I’m treated like a freeloader by someone who is ‘supposed’ to care about me. Furthermore the only reason she has anything to begin with is because of the help of her ex-husband, father, mother, and current husband… Its just blasphemy for me to ask for help the way she has and for the benefit of my children not just myself.

More importantly though, I am grateful I have friends! I put the word out to Facebook and found what we needed and then some. I had a few beautifully generous people send me some funds and donate to us and we got free food today which is a great help. I’m grateful to my community for helping raise my spirits and showing up for us. I know we all deserve compassion and sometimes it comes from those we choose and not the ones assigned to us at birth. I really can’t thank you enough. To all the single moms and dads keeping up with the times and lives of these small humans, we are not alone, we just need to help each other. I hope this is a start to a great weekend.

New Beginnings…

I’ve started this site to bring awareness to my own art and what I do with my life. I have always struggled with my own self worth and am on a journey to finally take care myself and those closest to me. I grew up with a narcissistic mother and did not have a stable home life. I spend my adult life trying to be everything she wasn’t and make sure that I give my kids the best life I can. Times are hard and I spend a great deal of my time advocating for my girls. There are things that are financially out of our reach but I don’t intend to let that stop me from trying. Creating this fundraiser is the next step to providing them a better life.

I was a single mom of one when I met my ex-husband. We lived in my tiny one bedroom apartment and I eventually became pregnant. There were many signs that our relationship had problems, but I wanted a nuclear family and he wanted children and a wife. The good things don’t stick in my memory as well as the bad things. I think that is what living through trauma does to you. I remember wanting things to work more then them working. Being a stay at home mom to a toddler and twin infants while your husband works all the time is hard and society is ruthless. The expectation of motherhood is overwhelming and without support it can make or break you. I have always had to keep my own family at arms length because whenever I trust to much it ends up screwing me over in the end. I learned the hard way and after couples therapy, mediation, three years of being divorced and back and forth in court, I ended up with full custody of all three of my children. I have had to defend their rights and quality of life on my own for the last nine years, which makes me a qualified expert on these kids.

Yesterday was a follow up IEP(Individualized Education Plan) meeting to discuss the results of their Functional Behavioral Analysis results. I have been requesting a 1:1 aid for both my girls in the classroom since last year. My daughters both have SIB’s(self injurious behavior) which can prevent them from working with others in a classroom setting and can cause disruptions to their peers. My girls are severely on the spectrum and work best with a single person working with them directly. Overall the school system wants to promote independence and this is a reason not to provide such an aid for risk of dependency on a singular person. However the bottom line is if these girls can’t move past their behaviors then they will not be able to access the education being provided to them. Beginning first thing this year I requested a meeting for their assessments to start and it was decided to do the FBA first. The results were as expected that these girls would greatly benefit from a 1:1 and we should get someone on the team to facilitate that in the classroom. I was told that finding someone reliable to hire has been difficult in the school system which I believe was pretty inappropriate considering that I’m the parent and that is not part of my responsibility. It IS the school systems legal responsibility to provide my child with a quality education.

The girls will get updated Behavior Intervention Plans and then we will proceed with getting the classroom an aid. I seriously hope this isn’t another thing I have to spend all year fighting for. Kids grow, fast, and special needs kids need as much intervention early as they can get. It is a shame we live in a society that does not value all children equally. Yes, my children need more help in some areas then other kids. Does that mean they don’t deserve to have the best chance they can have? I’ll be keeping this blog to discuss past and future projects and to keep periodic updates on the twins progress. If you read this, thank you for your time.