Fast forward almost 5 months and I started wondering, "I wonder how __________is doing?" Instead of doing the what used to be normal thing and picking up the telephone and calling them and asking them, I succumbed to the communication of the modern day, and got online. I think that is so lame that I've totally fallen into the mentality of "it's been too long since I've spoken with so and so, so I can't call" but that's for a different post. ANYWAY, I was looking at my friend Michelle's old blog and if I could have kicked myself in the butt I would have. Here I have been all "my life is hard, everyone else only has to worry about if the latest photograph of their kids is photoshopped correctly or if they posted the recipe for their amazing homemade 2 hour dinner w/ the correct photos, boo hoo". Then I catch up with Michelle (not on the phone of course, via the internet) and think oh yeah Marci your life is tough, her little boy DIED 4 years ago. Really Marci? Really? Then I checked out her new blog and read her words:
"I have at times wondered how it is possible for me to continue living and breathing. The grief and depression it has left me with has consumed me and dictated my life. I have been breathing, but simply existing. At times barely breathing. I described it to my sister yesterday as if I feel like my tears are drowning me inside and at any given moment the flood gates will give way and it will all come crashing out. However, Today for James, I start my new blog. No more existing. I am going to start living. I dedicate this blog to my new life. A life of living, of laughing, of remembering, of loving and enjoying. I give myself permission to live and smile and be happy.The average lifespan for my age is 81. From my calculations, I have 54 years left to live. I have lived 1,460 days without him. I have 19,710 to go. Far too many to go with the way I've been going. Join with me in my pursuit of happiness. Join me and commit yourself to a life of memories, fun, joy, and smiling. Life is too short to let it be so long by merely just existing." - Michelle Kranich
(If you want to be inspired you should read her blog. Beware though, she'll tell it how it is, and if things suck, she'll say so. Maybe that's one of the reasons I love her so much) I'm not going to start a new blog or anything, but I am going to try and have a better attitude about the successes of other people. Also, if things suck, I'm going to say so. And if i can figure out how to do it, I'm going to make it so people can't comment on my blog. Isn't that mean? My friend Blaire did this with her blog and it totally bugged me, but now I "get" why she did it. I guess if you want to say something to me you'll have to email me (firstname.lastname@example.org) , or even *gasp* call me.
Now that my lengthy introduction is over I'll get to the good stuff. I think the reason life has been a little hard is the reality of having two autistic children has actually hit me. As they get older, their delays and/or little quirks are becoming more obvious. I clearly remember a time in college when I was laying in bed one night talking with my roommate and closest high school/college friend Brooke. We were talking about our Bishops son Jamie who has Down syndrome. I said to her "dude, I hope I don't have kids who are challenged like that, because that is one thing I'm just not cut out for." That is where the irony sets in for me. My kids are not challenged "like that", if you look at them they look totally "normal" (what ever that is), in fact they look better than normal, they are so cute. The challenge OR blessing that I have is that they are high enough functioning that they have a real chance of normality we think, it just takes an incredible amount of time, effort, work and money. When I really think about that I feel an enormous amount of pressure and whole ton of "what if's" come to my mind. What if we don't provide them with enough therapies or opportunities? What if all the therapies and opportunities we're providing don't really matter? Is the fate of their entire lives in my hands? What if their abilities in life are just to be WalMart greeters? What if people say, what is that hot guy doing being a WalMart greeter? What if that ends up what we strive for? What if their potential is so much greater than that and I'm the one limiting them or not providing them with what they need to reach their potentials? What if they turn out completely normal and read this 20 years down the road and are extremely offended? What if I/we die, who's going to give them what they need? What if?
We have had so many decisions to make recently in regards to how the intervention that the school district is providing will effect them. I question myself all the time on if what I'm doing is right. Last year when we got Tyson involved with the district (they have to be at least 3) it wasn't a great experience. It was the first time I had heard the word AUTISM in reference to my child. I wanted to break the noses of every person in that room. Seriously, I was in there because I was concerned about his repetitive speech, and his inability to answer "Wh questions", not because I thought he was autistic. The kid had known his numbers and letters since he was 18 months old, he memorized books, he was loving and cuddley, what the crap were they talking about?! Then I heard them comment on Lucas & his tip-toe walking being a sign of Autism (at the time we were being told he was deaf), then they had the balls (yeah I said balls) to tell me with the two of them I should really think hard before having anymore children. Awesome, thanks. When we got into the actual class they assigned to us, it was all I could do to keep Jim from grabbing Tyson and running out of there. You should have seen these kids. They looked autistic, they were banging their heads against walls, and couldn't talk, and hurting other kids, it was a nightmare. They were 5 & 6 years old twice as big as my barely turned 3 year old. Besides Tyson, there was only one other kid in there that could even talk. We had meeting after meeting after conversation after conversation with the district placement office to try and get him in to the other class where the teaches said he belonged (after telling us he would be in physical danger if he stayed in that class). They wanted him to go from 9am to 3pm. This was my baby, who still to this day takes at least a 2 1/2 hour nap. They told me that if I was a "good mom" I would put him in that class and be fine with their quiet time in lieu of naps. I told the placement office to suck it, and we filed a suit against the school district. Once we did that, the people who were involved with our school contacted us and we were able to work it out, getting him in the more appropriate class. And even to this day when I am speaking to someone involved with the school district or other services I get crap about not having him involved in a program where he is getting 25 hours of services/week. (Currently he goes to school 4 days/week which adds up to 10 hours, he has 1 hour of ABA therapy at our home on the day he isn't in school, and we take him to speech therapy once a week as well) Is it enough? Am I doing the right thing by letting him nap? Who knows?
Lucas will be starting school the middle of May, they will also recommend an all day program for him that's 5 days a week. I will probably be pulling him out so he can come home and nap. I will get flack for that for sure. Is it the right decision? (Currently Luke has ABA therapy 2 times/week, speech therapy 2 times/week, Occupational Therapy once a week, a behavioral specialist once a week, and someone from the state 2 times/month) I don't know? According to the experts he should have more. We can't afford more. Am I doing all I can to afford more? I babysit a 9 year old who arrives at my house mon-fri at 6 am. We get him fed and take him to school, pick him up from school, and get his home work done. When we started speech and o.t. a few months ago, I started baby sitting a 8 month old baby girl who arrives at 5:30 am 4 days a week and gets picked up at 5pm. Should I find other kids to baby sit? I think if I had anymore, it would take away from my ability to serve my own kids. I probably just need to learn how to clip cupons or something and make the grocery stores pay me to take their food. I'm sure I read something on someone's blog about that.
This past week when Lukey was in his Occupational Therapy session I was talking to her about his recent need for heights. The kid is climbing on EVERYTHING, I seriously don't know how he gets where he does sometimes. It's a little scary. We talked about that being one of his sensory seeking needs. She recommended taking him places where he can get up high, like the play equipment at the park. I seriously almost started bawling right there. We used to go to the park ALL the time, like at least 4 times a week. I don't have time to do that any more. Our mornings are booked with therapy, we have lunch and naps, then pick the 9 year old up from school, and have to be home for the baby girls late afternoon nap. Then dinner, then it's too late. Are we doing the right things? And to be honest, on the days that we may have some extra time, I'm so freaking worn out I can't seem to find the energy to do that (although I may have found the solution to that in the form of ZipFizz that you add to your water from Costco :-)
All I have to say is I'm glad I'm not a single mom. When my husband is home he helps out a TON! Although our house in not in a perfectly clean state, it's also not a total wreck and a lot of that is due to his efforts.
PHEW! That was a lot of stuff, and I'm still not done venting. But, I do feel a little better, and I am tired. So for now I'll be done. Maybe I'll look at a blog or two and be happy for my friends and family. But before I go, I'll show you a few things that I'm happy about and proud of and you can be happy for me as well.
*March 22, 2010 Lucas said his first word "Nose" it was while working with one of this therapists and pointing to his nose. We were beyond words!!!
*Tyson continues to be a charmer, after one of his speech therapy sessions last week, he walked up to his therapist put his hand on her cheek, looked at her right in the eyes and said "Miss Mandy, I'm so glad I came to speech therapy today so I could see you."
Also, while my mom was tending the kids while we were in court in Idaho (oh yeah Jim got his parental rights for Asia appointed to him by the court, next post) they called my dad to tell them they were going to drive up to St. George. Tyson got on the phone and said "Grandpa can Tyson come to see you? And see Yapper Cat, and when I see you can you please give me a hug and a kiss?" I'm telling you, a charmer.
* Lukey is tearing up sound imitation. In fact I won't take signs from him anymore when he is requesting something, I make him imitate the first letter of the word. Sometimes its hard for him and he works SO hard at forming those sounds, and some times I swear in his head he just says "screw it, it's not worth the work" and walks away. Overall though, he's doing amazing!