First off I want to thank you guys for being willing to support & listen & offer advice. I am not sure how to begin to make sure that all of the factors that are in play in this particular scenario are noted. I guess its best to start at the very beginning. According to the Sound of Music, that's a very good place to start.
My two boys - Joshua (8) and Christopher (5) - both have autism. Topher also has ADHD and Josh has some OCD stuff going on as well. To see my boys today, people have a hard time believing me when I tell them about the boys' issues. Its because of how far they have come. When we first started out on this journey, you couldn't hold Josh or rub his back even though he would be crying and screaming. He was inconsolable. And being a mother and not being able to help your child - well its devastating.
I'll save the long version for the book I am writing, but suffice it to say, my children that "they" said would never talk or be in regular schools or have friends etc, my guys are proving "them" wrong! Both of my "non-verbal & trainable mentally handicapped (think Forrest Gump but a tad bit slower)" boys talk from the moment their eyes open to the time they fall asleep. It is a HUGE blessing because now we can at least figure out and know what is going on with them.
Now, with that said, being able to talk and being able to communicate are two different things. Josh has a TERRIBLE temper and displays self-injurious behavior when he gets mad: bites himself, hits & scratches at his face or ears, rams his head into the wall or floor, etc. Through the team of people that I have working with him, we have gotten him to at least be able to say "I am SO MAD AT YOU!" and then he runs to his room and goes into his bed. That alone is HUGE! For a while he stopped hurting himself, but over the last few months, it is slowly escalating again. So much so that instead of me calling a meeting at his school with everyone on "Team Fraser" ;) - they called me to come talk with them yesterday. It definitely came at the right time since over the weekend, Josh used a new phrase that rocked me to my core. he got so very angry with me over a Lego that he shouted "I'm going to go kill myself!"
Ok - so I did go to school to be a special needs teacher (isn't it interesting how God gives you tools throughout life that you are going to need later on and you aren't even aware of it at the time?). So having gone through all of that training, I am acutely aware that children, especially boys, who are 7-10 years of age, start seeking the abstract concepts of life and reality. They start understanding death, dying, Heaven, and God as well as consequences. So - the teacher in me knows that he probably heard that phraseology in passing or on TV and doesn't truly understand what he is saying.
That being said, there are 2 other factors that are impacting *my* reaction to him. The first, for those of you who don't know, 12 years ago, my youngest brother, Michael, who was 16 at the time, committed suicide. It tore our already dysfunctional family apart. I had the responsibility of raising my brothers and sisters while I was in high school due to my parents' work schedules and dysfunction. So the day that Michael died, I did not only lose a brother, I lost a son as well. I have grieved over him and have dealt with all of the lingering feelings and issues, but as many of you know, death isn't something that you just get over. I miss him. The boys would have LOVED him. So when Josh said that to me, I immediately went to my parents' kitchen on January 9th 1997 when I found out about my baby brother. But this time, it was over *my child - my son.* I tried very hard not to let those feelings get tangled into my parenting skills when faced with the statement Josh made.
And then there is this other situation. Over the last year, Josh (and Topher too) has regressed in some areas. Some of that is normal as when you learn something new, your brain needs to disassemble and make room for the new information and then it comes back again - stronger. I have been hoping and praying that this is the case with both of my boys. But it just doesn't seem to be. I just got a note home about another area that one of them was tested in and scored lower than the last 2 times he was tested. I used to run a support group for parents of children with special needs. Through that group, I met a wonderful woman who has a child on the autism spectrum as well. He is 10 now, but about when he was 7 1/2 or 8 he started persevering and fixating on death and dying. It went from "I'm going to kill myself!" to "I want to die and go to Heaven so I won't have autism anymore!" He began regressing at the same time that this topic came up. Now he is so fragile that he has lost verbal skills and is displaying self-injurious behavior and talks daily about wanting to die. He even has a plan on how he is going to carry it out.
SO - I hope I have shared enough for you guys to get the big picture of where *I* am as Josh's mommy and where I am coming from in my parenting. This is what I did when he shouted those words at me. My heart stopped and I lost my breath first and foremost. My mind and heart were flooded with all of these emotions and thoughts. When that happens, I normally just switch to "auto-pilot" and do what needs to be done to get through the situation and then I can fall apart later. I took him into another room and asked him what he meant when he said that. He told me he was so mad that he just wanted to die. I asked him if he knew what that meant, and we talked about Heaven and about being mad and being sad. All of this was done just he and I and on & in terms that he understands & comprehends. I explained to him that when you die, you can't come back. And tried to show him that not being able to come back and be with us because he was so mad about a Lego was too extreme. Honestly at this point I don't remember my exact wording - this happened last Friday. But I did bring up Michael. He has seen pictures of him in the house and photo albums. He knows that he has another uncle that is in heaven, etc. I shared with Josh that Uncle Michael got soo soo sad and soo soo mad that he decided he didn't want to be here either. He didn't ask for help or tell anyone how he was feeling. And now, because he made a bad choice, we don't and won't get to see him until we are in Heaven too. I then grabbed him into my arms and cradled him and cried as I told him - as I do every day - how much he is loved and wanted and needed and special and how long I prayed to be a mommy even though ALL my doctors said it was impossible, and how I got to be the most blessed mommy in the world because I got Joshua and Christopher. I told him that I would always be there, and so would the important people in his life. he can talk to any of us and it will all be ok. I did use and approach this entire conversation on his terms and his vocabulary and understanding. I had him repeat the important parts to me and explain what I said and he seemed to be truly getting it.
So this is where we are: he has said this phrase several more times and I don't think he truly understands - that it is just a trigger for attention. BUT knowing my family and Josh's dad's family and the myriad of mental "issues" going on - there are huge red flags going up inside me. And then watching my friend watching her son regress to the point that at 10 he has a suicide action plan, I am a wreck. I have been praying and trying to figure this all out. I have a peace about what i shared with him. But you know how it is, you second guess yourself when you are a parent.
That is where you guys come in! If you are still reading this novella! What would you have done differently? Feel free to share constructive criticism. I am just looking for more tools to have in my arsenal. Thank you all again. For listening and for being there for me. I am looking forward to hearing from you all. Love, Cherise
