I'm just not sure "where I am" anymore... I sincerely feel as though I'm in the middle of the ocean. Just riding the waves. Sometimes they consume me. Sometimes I stay afloat. Nothing lasts very long. Just up and down, up and down.
Stuff with Jack's school isn't going well. I really thought after our meeting things would get better but they still aren't doing the things they need to. I really just don't think they have the capabilities to do what he needs. But they really don't want to give him a one-to-one tutor. Looks like this is going to be the battle I thought it would be after all. They want to push back his meeting but I'm trying not to let that happen. We're going on two months of regression here, I don't have another week to spare...
Yesterday I had to run to the exchange and the commissary. Jacob was working so I decided I would take both kids, by myself. Something I never do. It's just so incredibly hard when you have a child who is completely and utterly unpredictable. We raced through both stores and things were going great! I was so excited, maybe I can do this! Maybe I can start taking both kids by myself, like a "typical" parent... But when we went to leave the commissary we had to exchange the car cart (a cart with a little car attached to the front) for a regular cart because you can't take them out of the store. I had Liam directly in front of me "helping" me push the cart and Jack was along side of it holding on, just as he's supposed to. We walked out the first door and Jackson sprinted. Of course right into the parking lot. Can you say heart attack? I stopped the cart and told Liam to stay right there (probably not the smartest thing, but in the moment I didn't know what else to do and Liam listens incredibly well). I ran as fast as I could to grab Jack before he made it into the main body of the parking lot. Thankfully I caught him. Thankfully he didn't get hit by a car! Ugh! He of course didn't understand that he had done anything wrong at all. Sometimes little things in life can be so incredibly hard when you're dealing with Autism... So much for being able to take both kids by myself. It will be a long time before I dare to do that again.
I've been having some incredibly weird dreams lately. The most recent one was that the Joker (yes, the joker from batman) was crashing airplanes. First one crashed just outside the back gate to our base. Then I had to go somewhere and was seated on an airplane when he strode on. All the passengers (including myself) were ranting and raving about how he couldn't be on the plane but no one was doing anything. He stayed on the plane as we got ready to take off. I woke up covered in sweat and shaking so hard I felt as though I was having a seizure. Strange dream... But I feel like it kind of represents where my life is right now. I feel like I'm on a plane that everyone knows is coming down... But no matter how much I know that I don't get off the plane... Why don't I just get off the plane? So many of the things in my personal (meaning my own, not with my family) struggles are things that I could just walk away from, things that I could change. But I choose to sit here and wallow. Sometimes when you're down in the bottom of a deep, dark pit it's hard to fight to find a way out. Sometimes I just want to lay down. Sometimes I just don't want to fight...
Last night we went to Vespers at church. I was one of the first to walk out of the church and into the entry way. There was a woman standing there who I've seen many times before. She has a grown son with Autism. I know this but I've never actually spoken to her. So we began talking, I asked her how her thanksgiving was, she then talked about her son and said that he has Autism. I told her my son does too. She then went on to ask questions like "Does he talk?" Jack was non-verbal when he was diagnosed at age 2 but we've come incredibly far and now he has quite an extensive vocabulary... The progress we've made is really remarkable. Jack does have Autism, he really does. But people seem to doubt me, as if I'm lying about it. Sometimes it feels like Jack isn't "autistic enough" to actually be autistic. Autism is a disorder that has a wide range of symptoms. Some people are severely Autistic and others very mildly. When Jack was diagnosed he was right at about a 1/3 of the way across the scale. Right in the middle of mild-moderate. I don't know where he would fall anymore... He has come a long way. Many of the things we struggle with are things that people wouldn't know or see if they weren't trained. And so consequently sometimes it feels like people don't believe me. He just looks like an unruly child, and I a bad parent. Sometimes my mind wanders in strange ways, maybe Jack ISN'T Autistic, maybe I AM just a bad mother... I know deep down this isn't true. I've put my blood, sweat, and tears into getting Jack where he is today. But sometimes I can't help but just feel awful about everything...
All in all the conversation was incredibly awkward with the woman from church. Which is exactly why I don't do support groups or any thing else like that. I don't want to sit and compare my child with others. I don't want other people judging me or my child. I guess the plan is just to continue to plug away at this beast we call Autism and hope that someday we won't have to... Someday things will be different...
Hi Steph,
ReplyDeleteI'm a friend of Angie's and she told me about your blog and how you are caring for a child with neurological differences. I wanted to let you know that I understand some of the feelings you have expressed here. We're dealing with a different diagnosis but many of the same struggles.
We adopted two children who have neurological and learning differences because of prenatal exposure to alcohol (FASD= Fetal Alcohol Spectrum Disorders). There are a lot of shared characteristics between ASD and FASD and as one of my friends, the mom of a son with autism, said, "At least you know what caused your kids' problems."
Our son is almost 13 and he has a lot of behavior issues that others see (rages at school, etc...) but our daughter (8 yrs old) sits quietly at school and in public and then loses it at home. She is significantly affected but others don't see it unless they spend more time with our family. It is so frustrating when people don't understand.
I want you to know that you CAN do this! You are your son's mom for a reason and I can see by your writing that you not only cherish him but recognize his need for a strong advocate. That's exactly what he needs.
Parenting children with neurological differences is a different path, a harder one in many ways, but it is a beautiful one that I am thankful to have walked. I have learned not to try so hard to change my children but to allow myself to be changed for the better by knowing them. The world may never understand but I am growing in understanding every single day. What a blessing that is!
I still get knocked over by those waves of grief that hit me, you described that ocean very well, but we've been able to stay afloat by God's grace and by connecting with others who understand. Please let me know if I can help. We've navigated the systems (school, social services, etc...) and learned about resources that can help. I can just listen without judging if that's what you need (lots of people have done that for me!)
My email is on my blog- http://coffeecatharsis.blogspot.com/
Be blessed.
♥ Kari