I am sitting here in tears. I know this blog needs to be written but I don't know where to start. We had a bad day here. Gabriel was out of control most of the day. It was meltdown after meltdown and many of them were violent. It's 9 p.m. and he is supposed to be sleeping and I just heard him start banging his head on the crib again. I am going to have to go in there and make sure he's not hurting himself and start again when I know he's safe.
He is still awake at now, 10 p.m., but I think that he is calm enough not to be engaging in self injurious behavior. I know that autism is hard to understand. I know that autism changes every aspect of life. I know that the only way to make it through days like this is to celebrate the small victories and changes with our autistic child. I have read more articles than I can count on how to help the child through meltdowns, how to limit meltdowns, what to track, what to change and how to help make the number of violent meltdowns diminish and the one thing I have found that carries through all of them is this; not one single article is written for a toddler who cannot express himself or understand most of what is asked of them.
So here I sit, loving the ideas on how to get him toward no meltdowns when he is older but at a loss how to make it through these days until then. I would consider myself a positive person. I try to do what I can to ensure that I look at the world with a positive outlook. I don't dwell on things I cannot change (for the most part) and I believe that everyday we have a choice to either be positive or negative when we look at our lives. My father told me when I was very young that life is 20% what happens to you and 80% how you react to it. I took that to heart. I want to be a good role model for my children. I want them to look at me and see strength. I want them to look at me and know that you can make it through almost anything if you choose to do things differently. I want them to know that change is possible, but today I fell down. I had to leave the room. For the first time, in a very long time, I just wanted to get into our car and drive away. I felt like a failure and so I did what I do... research. However, I didn't find what I was looking for and I felt even more let down, even more like a failure, even more hopeless.
Today I had to defend my toddler from my autistic 2 year old. I had to sit right next to him to make sure that he didn't hurt her. Today I had my hair pulled, I was bitten, my face was clawed, I was scratched on my neck to the point that it bled. To put it plainly, I was attacked. I was attacked by my child. There is nothing in this world, no amount of talking, no amount of reading, no amount of education that can truly enable you to be "prepared" for that reality. There is something so soul crushing about your child looking straight at you with the intent of injuring you. When it happens over and over again and you walk away with a reminder (like bleeding), it does something to your soul. This is your child, the one you held inside of you for nine months, the one you gave birth to, held to your chest, fed, nurtured and protected, looking at you with anger and hostility, purposely trying to make you hurt.There is no way to make that any easier. I am still looking and I keep thinking I'll "get used to it" but I don't think that's true, because every time it happens, it hurts more. Now, I am not an idiot. I do not believe that my son is doing it out of malice. I am very aware, that it is out of desperation, and that it is not because he hates me. I know that I'm not failing as a mother. I know that I am doing the best that I can. I know that we are making progress and this will not always be. But, those are the things that I know in my brain. Unfortunately my heart and soul feels things differently than the things that my intellectual self does. I am not a stupid person, but I am a mother and my children are a part of my heart. When they hurt, I hurt, when they cry, I cry, and when they hurt me, I fall down. It was not meant to be this way. There is just something horribly unnatural about a child trying to hurt their mother and it hurts me to the core. I had to say that. I just had to get it out there. To scream it, even if no one is listening and that is why I am putting it here. In all the research I did today, I didn't hear one mother say, when my child hurts me, it hurts my heart, it hurts my soul and it makes me feel like I'm failing my child, and THAT is how I feel. Now that I've taken the time to admit to the way I feel I can take a breath and take a step back and just let it go. Tomorrow is another day. A day that will, hopefully, be better and hold more laughter than tears. I think it's really important to realize that none of us are superman. We are human and we need to know that feeling like we spend more time trying to get up than we do on our feet is acceptable. It's okay to feel overwhelmed and lonely and heartbroken. We are autism mom's. We are in the trenches every single day. We are the ones who step in when no one else can handle it. We are the maternal warriors and we do it, without question day in and day out. That is something to be proud of. Today I felt like a failure but tomorrow I will get up and do it all over again. I will smile through the tears, and show my children (and everyone else) that this will not break me. I will be an advocate for my child and when the night begins... and everything becomes silent, I will let myself feel, accept myself for who I am, and try my hardest to love myself as much as I do everyone else.
I sincerely apologize for my lack of blogging this past week but I have been crazy busy, but more importantly, my computer was broken. Thanks to my incredible brother in law, we have a replacement that will work for the moment :D Got to love family members that are smart enough to make their own computers and nice enough to share that with you. With that behind me, I want to move on to something that has just taken on a very important role in my life. I am going to start out by saying that I do NOT sell Young Living oils. I have no direct interest in whether or not anyone purchases anything from them. I am not going to profit by anyone increasing in sales. I am stating that because I do not want to be an advertisement. I am including this information because this matters to me. I am including it because it is important to how our household functions. I am including it because six months ago I was the biggest skeptic out there and I had no interest in proving or disproving whether or not they work. I am going to start at the beginning. My husband and I, as I have said, have six beautiful children. We struggle to make ends meet. Essential oils are expensive and I never had the urge to try them until I stumbled across a group on Facebook called Autism and Related Disorders and YLEO. I fell in love with the people there. They were all parents of autistic children, they all understood, none of them had a lot of money but they all had the same thing to say. "Essential oils changed our lives." I took the time to check out the pricing list and I didn't know if we would ever be able to afford it. Thank God for tax time. The minute we got our refund this year, the first purchase I made was the starter kit (everyday oils, diffuser and information) It was spendy but I didn't care. I was desperate and if it worked, it would be more than worth it. Gabriel doesn't sleep. Okay, he does, but not in the normal way that a 2 year old would sleep. Sometimes he goes for days with just a couple of hours here and there and then crashes for a normal sleeping period. A huge part of the reason I bought the original oils was to help him sleep. Like I said, I was desperate. The everyday oils that I ordered came with Joy, Frankincense, Lemon, Lavender, Peppermint, Purification, Pan Away, Peace and Calming, Thieves and Valor. I'm going to be completely honest and tell you I had no idea what to do with any of them other than the Lavender. That one I was certain I understood how to use. So I started diffusing it, and trying the others out to see what kind of effect they had on Gabriel and his sleep. Joy was too strong and he got agitated, Frankincense works for him, it keeps him calm and centers him but not during the day. Lemon is supposed to help with feeling outgoing and happy (he has no issues with energy and happiness). Peppermint works amazingly when he is sick. Purification works for cleansing the blood and the air. Pan Away is more of an adult, sore muscles, rub. I fell in love with Peace and Calming, it works wonders when he is in a meltdown. Thieves is INCREDIBLE for preventing and helping with illness, it is an anti-viral/anti-biotic so I diffuse it when he is feeling down and ill, and then there is Valor. I cannot say enough about Valor. It has made miracles happen in our home. It helps him sleep, it helps him concentrate, it helps him balance his moods, and it ends his meltdowns. I love Valor more than anything I have ever loved in the history of my loving. Seriously, we cannot live without it. Case and point to follow.
I was diffusing Valor and Lavender all the time. I loved it and he loved it and all was well in our house. Until we ran out. We didn't have the money to buy his oils again and things got bad, actually worse than before the oils, very quickly. I was amazed at the drop in his sleep, the amount of meltdowns during the day, and his overall unhappiness but we got used to dealing with all of it again and when I got the new set of oils that I ordered I was amazed all over again.
I ordered a new starter set, so that I could get the Valor (they are having distributor issues at the moment) and I needed another diffuser for the upstairs of our house. I also added to the order, Idaho Blue Spruce, Vetiver, Eucalyptus Radiata, Aroma Siez and Oregano Oil. The day we got the set, everything changed again. Gabriel literally was in mid-meltdown when the order arrived. I opened the box and started diffusing right away, and everything stopped. He calmed down and his anger subsided. It was a miracle. That being said I would like to add some notes on the new oils I added. Vetiver is a miracle oil. There have been studies done in Sweden regarding it's effect on autism and meltdowns. There was a whole study proving that it had calming and increased concentrating effects on children with autism and it does. It does everything they said and more. I have now put into a bottle by themselves, Lavender, Aroma Siez, Valor, Vetiver and olive oil. I currently use this when he has the angry meltdowns that do not go away. They instantly calm him. He is like a different child within moments of massaging the mix on his feet, arms, legs, and stomach. After a few minutes the meltdown is over and he is centered again. It's amazing. I hope that this overview of what I use my oils for was helpful. Honestly, if it only helps one person. Someone who feels hopeless and like nothing will help, I will feel better. There are still days where Gabriel has his issues but the improvement we've seen is incredible and needs to be shared. As parents of special needs children, we all have those days that we feel like we're stuck and nothing we do is good enough. If this has the ability to help, even one parent, feel like they're not alone and there is hope out there I am happy. As always if you guys have any questions let me know. If you think you want to check into ordering oils, let me know and I will introduce you to my wonderful sponsor so that she can add you to the group and you can get to know my wonderful support group of parents in the same position. Take care everyone, and goodnight.
As parents of autistic children, or any special needs children for that matter, we are the owners of our very own, very large, set of juggling pins. On any given day they can take the appearance of any of a large number of things. In the aftermath of the days activities I tend to feel a bit like the clown that never made it through clown college, as I lose hold of all of the pins I am supposed to keeping in the air. For me, it is a daily struggle just to make it through the day. I try to remind myself that I am only human, but many times that sentiment gets lost in the list of things that have to be done. I will use Monday as an example; Monday my husband comes home from work, he has been gone since Tuesday of last week and will be leaving again on Wednesday evening. So we have two days to get things done. So, I will spend all night awake with my two youngest. Gabriel, because he is autistic and doesn't sleep. Arryn because she is trying to go from soy milk to non-lactose milk and it is wreaking havoc on her system. Depending on how things go in the morning, I will (on average) get to sleep somewhere around four or five and hopefully (if Arryn cooperates) be able to sleep a few hours while my MIL Marilyn is awake with Gabriel and Dominik. When I get out of bed there will be butts to change, and medicine to give (they all have colds) and food to find. There is a possibility of floors to be swept, noses to be wiped, melt-downs to try and soothe and over-all peace to be kept. My five year old is going through this stage where he cannot be left alone for a moment without destroying something. This can range from gouging a wooden chair with a spoon to destroying Gabriel's sensory therapy items. So there is a constant battle with him from the moment he wakes up to the moment he crawls into bed at night. (and sometimes that crawling into bed at night is with me... and he kicks and tosses and turns so I get no sleep at all ;) And the day begins. I have to make phone calls on Monday. I have to set up dentists appointments for Dominik (he has a cavity), for Gabriel (because he grinds his teeth) and check-ups for the other children. Misty has a field trip on Tuesday so there is paperwork to fill out and lunches to buy and pack. Kodee has a 3 day field trip starting Wednesday so there is a list of things we have to buy, lunches to pack and chaperoning for both Adam and I, myself Tuesday and him Wednesday. I have to call and attempt to start setting up respite care for Gabriel and get a hold of our social worker and let her know what I have found out. I am waiting for the updated version of the IEP from early intervention so that I can get it, and pay stubs to SSI. I also have to contact the people at MNsure to make sure that our application for coverage for our family has gone through. There are bills to be paid, meals to be made, naps to be taken, and in the midst of all of this are my children. If you ask the parent of a special needs child they will tell you that this is where the biggest struggle is. Which one of my children am I dropping today? What am I missing? What do they need that I am unable to see because I am struggling to keep all these pins in the air? These are the things that keep me awake at night, even when my children are taking a well needed sleep break, I am not. This example I gave, is not a chance for me to whine, not an attempt at sympathy, just a realistic look at what our family faces on a daily basis. In the midst of all these technical things that need to be done are our children. Their needs are the most important things in our lives, yet they seem to be the pins that hit the floor first. Gabriel is a lot to deal with. I would not change anything about him but most of the time he is all encompassing. He has needs that have to be addressed to avoid overload and meltdown and there are days when I feel that is all I do. Then there is Arryn. She's a toddler and struggling with the fact that her daddy isn't home when he's supposed to be, so she's needy and, on top of that, she's tired. Dominik is ADHD and very hard to keep busy. He gets bored and then he gets into trouble. Misty and Kodee so often get overlooked because they are older. It breaks my heart. I don't know what I would do without them. They are wonderful and loving children and they help out as much as they can. However, they are children, and they have their own faults and things they are trying to figure out for themselves. Like who they are and if I am being honest with myself, where they fit into our family at all. I went to a WIC appointment the other day and the woman stopped mid-sentence and said, "You look like the type of mother who gives everything for her kids. How are you doing?" It took my breath away. I didn't know how to answer her. I really didn't say much of anything other than my kids come first, everything else is just details. It gives me heart to know that someone, who barely knows me, noticed that my kids are my priority. I try. I really do. At the end of the day all I can hope for is for my children to know that I love them. For them to be okay and succeed with the knowledge that I would give anything (and I often give everything) to do them to make them know how loved and truly amazing they are. So as this night continues on I am sitting around looking at the pins that I have dropped today. I realize that they are only pins. Most of them will be here tomorrow. Those that won't, well, there is nothing I can do about it now. So I am going to do my best to wipe off my makeup... collect the pins I've dropped and know that I am doing my very best. My children are happy. They are loved and if I make it through this without breaking any of them I will have succeeded. Don't hide behind the tears of a clown. Realize, that while we feel like we need to be superheroes... we are human, and as long as we don't drop the pins of our children, occasionally letting everything else go is healthy. Pick up, dust yourself off, and start again, and I will try to remember the same.
Today I am starting this blog, and it's subsequent Facebook page, as a way to make myself feel slightly normal. I know that I cannot be the only autism mom to get to this point. I have ingested all I can take of people who have no idea what it means to raise an autistic child, telling me what I need to do to help him and ensure that he gets what he needs.
And so it begins. Let me start at the beginning. I am a 32 (almost 33) year old mother of six beautiful children. I have two girls and four boys. My oldest is twelve (going on 30) and my youngest is 17 months. Their ages and names are as follows: 12 Misty (f) 11 Kodee (m) 10 Markus (m) 5 Dominik (m) 2.5 Gabriel (m) and 17 months Arryn (f). I had my hands full long before our first autism spectrum diagnosis. I am married (for four years in June) to an amazing man named Adam. He, unfortunately, is working four hours from where we live right now and is home from one to three days a week. I live with my mother in law, Marilyn, who has been instrumental in my mental sanity these last few months.
Our first spectrum diagnosis happened in 2012. My son, Kodee, had always excelled in his schooling. He was a genius with a vocabulary that rocked the world of anyone he came into contact with. However, he was always having trouble keeping friends. Kids were mean to him and it was a regular occurrence that he would come home from school in tears because one of his friends had decided he didn't like him anymore. He had other "quirks" about him, like playing with toys that were meant for younger children, anger issues and an inability to concentrate or stop himself from talking once he started. Each one of his teachers mentioned how wonderful he was but also how he never stopped moving, panicked when there was a timed test, had poor eye contact and would often get lost in the middle of a sentence. I took him to our family physician for help. He is a wonderful man, and has been our doctor for years, and without hesitation he made the referral. He did, however, believe that Kodee suffered from ADHD, which was something that I did not believe. I tried to tell him I didn't think that was the issue, but he has a son with ADHD and so, he was certain, Kodee had it as well. I had no idea then, how often that would happen, but I learned very quickly that many people with special needs children believe they know more than they do, even me. I get reminded every day that I have no freaking idea. My children keep me in check.
Kodee went to see the Psychology people in our local area six months after the initial referral was made. Any parent of a special needs child will tell you that there are too few qualified places to get the help you need. The wait list is long, and the questions you face in the mean time are terrifying. The testing went really well and Kodee, who was 9 at the time, really enjoyed the attention he got from the amazing staff. He was diagnosed with Asperger Syndrome. He had some information sent to us regarding the diagnosis and the "helps" that we should put into place to help him succeed in the classroom. Initially, the school came off as really helpful, this didn't last long, and because of the events that were about to start unfolding, I dropped the ball as well. Kodee should have started counseling, he should have gotten a 504 plan in place. None of these things happened until much later. I fell down in my duties as his advocate but I am doing what I can to make that right.
Gabriel is my other ASD baby. He was born in August of 2011. It was an emergency c-section after over a week of active labor with no progression. His blood sugar was too low, my placenta was too thin, and it was detaching from the wall of my uterus. We would have died if I had been induced. I was put under for the c-section and by the time I got out he had already had his first bottle. He did really well for the first few weeks. However, as things do in my life, they got insane very quickly. I found out that my mother had cancer when he was four weeks old. She died of lung cancer on the day he turned 6 weeks old. Exactly two weeks from the day she was diagnosed. Everything went down hill from there. I lost my breast milk, I went into a serious depression. I lost my mind a little bit and I lost track of what I was doing, and why. Even through all of that, he seemed to be a thriving, normal child. Until right before his first birthday.
When he was 11 months old his progression stopped. He didn't want to walk, he wasn't cooing anymore, he wasn't making eye contact and he didn't eat anything other than chicken nuggets and chips. He refused anything that had a soft texture and he was growing more and more distant. So I did what I thought was smart. I went to my parents and anyone who would listen. I was met with the usual progression of thoughts, well my child didn't do that or he doesn't do what my child did, so he must not be autistic, or maybe that's just what I wanted to hear. My step-mother thought maybe Asperger Syndrome but not ASD, at least not full blown anyway. My husband didn't want to deal with at all and I was sure he was just hitting a bump in his learning. With all the stress (we moved right before the regression started) I figured he was just taking his time with learning and speaking and if we gave it time, he would get better. He got much, much worse before I did what I should have. It actually took me moving far away from my friends and family and into a house with my mother in law to get him what he needed. I started at Autism Speaks. They are AMAZING people. I cannot say enough good things about them. We took the M-CHAT-R (Modified Checklist for Autistic Toddlers-Revised, which can be found on their page under screen your child) online for Gabriel. He had everyone of the markers. When I had something physically in my hand to show my husband, we made an appointment for a referral from our "new" family doctor, and we cried. There is something to be said for the "experience" I got from having Kodee tested but nothing could have prepared me for what we were about to go through with Gabriel.
The next few weeks were a blur. There were phone calls and tests and visits from the Early Intervention Team. There were forms to fill out, permissions to give, meetings with Gabriel, tears, melt-downs, and yes, it was hard on Gabriel too. ;) Seriously though, it was insane and if I had to try and go back now and remember everything that happened I wouldn't be able to do it, even with a gun to my head. It was too much, too fast, and I am really glad it's over. At least I was, until I was told that a diagnosis from the IET is not a diagnosis and we have to start all over with the medical field in order to obtain a medical diagnosis. (Oh joy of joys) That is what we are doing now. In January he was diagnosed by the wonderful people at Early intervention. It is now May and we are having to start all over again with the people at Mayo Clinic in Rochester. There is (surprise, surprise) a four to six month waiting list. We are on it, and so we hurry up and wait.
I hope this gives you some idea of who we are and where we are at. I will be writing again. I have a million things to write about. If you find this, by some random chance, and you have questions, please let me know :) I would be happy to answer any of them for you. Or send me an email here Mindy's Email
