Wednesday, July 22, 2015
Another day. Autism strong!
Service families are some of the strongest people I know(I do love a man in uniform, it just does it for me). I try to imagine the life they lead and the life of the soldiers wives and husbands who are left behind. I can't imagine having a help mate and then the call to duty comes and you are just dropped and left to deal with the whole thing alone. Yes, I am a single mom but really from the beginning I have done this along so I am use to the struggle. Yesterday I met a mom who is probably should be the winner takes all. She has three kids and her husband is a Marine and she has three children, one who is low functioning, non-verbal ASD. She was handling all three kids like a puppet master and not breaking a sweat. She got them all to help each other and the LOVE, the LOVE she showed her kids humbled me. Her situation is worsened by PTSD, her husband has served three tours and will not admit he gets worse every time he gets back (been there with two ex's and bought the t-shirt, horrible doesn't begin to describe each relationship). The isolation and pain flew off of her like darts. Her beautiful son is learning to communicate through PECs his personality overflows with happiness. We sat in the laundromat each washing comforters speaking as community members and mothers and I realized my life is great. What am I whining about? This woman has to go through what I already went through plus with two additional children and she is not crying or even looking stressed she's in the fire and sitting on it like it is a comfy couch. Sometimes you just need a reminder the world doesn't revolve around you and that no matter what life continues. One of the most profound thing she said to me is that her son having autism made her have a spine of steel. Having to deal on a daily basis with the school, the doctors, social workers, therapist and the government and fighting for every service has left her and her husbands problems seem like a walk in the park. They are trying to work it out, but if not like she said "we will continue to grow as a family, his participation is up to him. I will not deal with someone who will not seek the help they need". You can tell she's willing to fight for her marriage but she's at that crossroads where it could end or recover. My hope is that he will man up and realize what he's going to lose. What an incredible person. What a lesson I learned today.
Forget Army strong, Autism Strong!
Thursday, June 18, 2015
Family is all you have.
The introduction: I am a Christian (don't be scared, I only preach when I am really angry). I am a Mom (Olivia's mom is my chief title). I am a 44 year old woman (yeah that one gets neglected way to much but I am working on it). This blog is actually the start of a book that I am writing. The names were changed not to protect the innocent but because I don't want to be sued. I know corny but me. A friend finally convinced me to turn in my notebooks to a publisher she knew and the lady actually liked it. Her request was for me to try the online format because she wants to develop a little mini podcast. I am excited and nervous these first couple of blogs will be really rough but here we go...
Family is all you have. My aunt repeated this to me most of my life. She believed in it. She lived it. Now she also was quick to add a codicil of FWFYF (if you don't know what that stands for well sorry).
My sister called me at 11:30pm at night immediately I sat up and thought one of two things she's bored and had a little of the happy juice or my grandmother. Immediately I received the standard happy greeting we use between each other and I knew my grandmother was fine. As usual Cupcake as I call my twenty year old ASD low functioning non-verbal daughter was in the middle of the bed deeply into her barney videos and I was running a list in my mind of the hundred things I could be doing besides laying in bed. Her next statement shocked me and had me running for the good stuff. Now, I would never admit it but for years I admired my sisters ability to avoid marriage like it was a contagious disease and still remain in a great relationship. My she hero had fallen victim to the hype. Yet, I was happy for her if she wasn't joking. I listened for her long time partner to confirm that all was well and he said it was true they were finally marrying after more than a decade. Now my sister was tying the knot.
The next day at when we both are sober, she calls again and we discuss details and who will be attending. I could tell by her voice she wanted to ask the question, the elephant in the room, Autism. No cupcake will not be coming with me. Followed by the unspoken I am sorry and the guilt. Guilt that my child is not able to be at an event so important to her aunt. The guilt that some how this was my fault. I start to speak and try to explain, my sister quickly cuts me off with an I know you don't have to say anything. Then the silence, the horrible silent communication between sister first come the angry thoughts from my sister "Why can't you bring my niece? I don't care about those other people". My silent response to our silent argument, "This is non negotiable it would be to hard for her. I love you but I can't put her in that environment". We have had this silent argument many times Christmas, Thanksgiving and vacations. We both know how this ends, Autism wins. Our actual verbal conversation starts again, my sister says "Well we will just have to so something together later". My sister doesn't like to lose and we will continue this fight together because my sister and I both know she loves her niece.
I want to explain something before all of the pro inclusion people start coming at me. I take my daughter out. She goes where I go, however I know my child's limits. Cupcake has had to suck it up through a lot of Walmart trips, vacations, plays and even some dates with me. Hiding her autism is not an option. Everyone in my life knows and adjust to the fact or I just cut them off. This particular event will be held on a boat and with the escape and wandering issues and no easy way to get out of the situation if a meltdown happens, the set up is all wrong. Besides this is my sisters day not autisms day and if my kid was present I would be on red alert and not giving my sister my support. Oh did I mention Cupcakes new trick she likes to flash people. Especially when she is nervous or upset. Wouldn't that give the guest something to talk about. We also have food issues my kid will only eat a select number of foods. I cannot carry a bag of fries in a purse the size of a donut. You always get these so called experts who will recommend immersing the student in with others for socialization purposes. To tell you the truth large crowds make me anxious, I avoid them like the plague so why would I force my hyper sensitive daughter into that situation. Fight or flee would surely take hold of us both.
Autism is like a thief. It steals these moments of family and of normalcy from a families life. Autism the elephant in the room.
Family is all you have. My aunt repeated this to me most of my life. She believed in it. She lived it. Now she also was quick to add a codicil of FWFYF (if you don't know what that stands for well sorry).
My sister called me at 11:30pm at night immediately I sat up and thought one of two things she's bored and had a little of the happy juice or my grandmother. Immediately I received the standard happy greeting we use between each other and I knew my grandmother was fine. As usual Cupcake as I call my twenty year old ASD low functioning non-verbal daughter was in the middle of the bed deeply into her barney videos and I was running a list in my mind of the hundred things I could be doing besides laying in bed. Her next statement shocked me and had me running for the good stuff. Now, I would never admit it but for years I admired my sisters ability to avoid marriage like it was a contagious disease and still remain in a great relationship. My she hero had fallen victim to the hype. Yet, I was happy for her if she wasn't joking. I listened for her long time partner to confirm that all was well and he said it was true they were finally marrying after more than a decade. Now my sister was tying the knot.
The next day at when we both are sober, she calls again and we discuss details and who will be attending. I could tell by her voice she wanted to ask the question, the elephant in the room, Autism. No cupcake will not be coming with me. Followed by the unspoken I am sorry and the guilt. Guilt that my child is not able to be at an event so important to her aunt. The guilt that some how this was my fault. I start to speak and try to explain, my sister quickly cuts me off with an I know you don't have to say anything. Then the silence, the horrible silent communication between sister first come the angry thoughts from my sister "Why can't you bring my niece? I don't care about those other people". My silent response to our silent argument, "This is non negotiable it would be to hard for her. I love you but I can't put her in that environment". We have had this silent argument many times Christmas, Thanksgiving and vacations. We both know how this ends, Autism wins. Our actual verbal conversation starts again, my sister says "Well we will just have to so something together later". My sister doesn't like to lose and we will continue this fight together because my sister and I both know she loves her niece.
I want to explain something before all of the pro inclusion people start coming at me. I take my daughter out. She goes where I go, however I know my child's limits. Cupcake has had to suck it up through a lot of Walmart trips, vacations, plays and even some dates with me. Hiding her autism is not an option. Everyone in my life knows and adjust to the fact or I just cut them off. This particular event will be held on a boat and with the escape and wandering issues and no easy way to get out of the situation if a meltdown happens, the set up is all wrong. Besides this is my sisters day not autisms day and if my kid was present I would be on red alert and not giving my sister my support. Oh did I mention Cupcakes new trick she likes to flash people. Especially when she is nervous or upset. Wouldn't that give the guest something to talk about. We also have food issues my kid will only eat a select number of foods. I cannot carry a bag of fries in a purse the size of a donut. You always get these so called experts who will recommend immersing the student in with others for socialization purposes. To tell you the truth large crowds make me anxious, I avoid them like the plague so why would I force my hyper sensitive daughter into that situation. Fight or flee would surely take hold of us both.
Autism is like a thief. It steals these moments of family and of normalcy from a families life. Autism the elephant in the room.
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