Weekend blur

This weekend I was anticipating a bad one. It rained all weekend long. We usually try to go somewhere during the weekend to fight off cabin fever. Of course the act of going somewhere is a tricky one. We can't differ from our usual routine much without much notice and preparation. We also have to think about Joel's anxiety level, as well as my own. Due to past behaviors I find that my anxiety level is quite high when we are out in public. I never know what will set him off.

Our Saturday started off like any other. He wakes up and comes to my room, if he isn't already in there. He wakes me up. If it is before 8:00 am, I suggest he watch TV, quietly, as he waits for 8am. At 8, I get out of bed and we go get him 'chocolate milk'. This helps get his blood sugar up so that I can avoid any unnecessary fights. He plays/watches TV, plays on the computer, or helps with Addy. This Saturday I had a lot of chores to do so he had his choice of what to do. He had a pretty good morning and early afternoon. We went to the church/school to check on our Chrysalises. We then went to the store to grab one thing then back home to cook dinner and to work on cleaning his room, which he did with minimal complaining. In fact, no complaints. So out of character for him.

That night, after dinner he started complaining about his body hurting. I thought he was complaining about his boo boos on his knees. (He had fallen this week). Later he came and snuggled on the couch with me and I realized he had a fever. He told me that his knees couldn't bend. This reminded me of a time when I was about 5 or 6. My parents went out for New Year's Eve. Sherry, my sister, was babysitting. My knees were hurting all night and eventually got to the point where I couldn't bend them. She kept yelling at me because she thought I was being lazy when I wouldn't bend over to clean up. By the time my parents' got home I had to be taken to the Emergency Room. It turned out to be an Ear infection that had gone to my knees. So...Joel's temperature still isn't very high so we will have to call the doctor Monday morning.

Sunday was pretty low key. We stayed home from church since Joel still wasn't feeling well and Addy started to cough again. We got a lot done. Half the laundry got done, bathrooms got clean, and floors got mopped.

Now...what will this week bring?

My "Perfect" Day

So tonight after dinner, a dinner that Joel actually ate, I was thinking about how great today was. The baby was content and playing quietly in the floor, Joel was sitting next to me talking to me about this and that, quite honestly I wasn't listening too intently until I heard him say 'chicken goes bauk bauk (not sure how to spell this...forgive me.) This phrase was the same one I have heard over and over for the past couple of days. You see, every week there's a different phrase. Who knows what it will be next week. Josh calls to let me know he's on his way home. I get excited because the kids hardly ever get to see him when the sun is still up. Josh gets home, eats dinner, and as we are sitting there I decided maybe we should take a walk. They usually venture out on walks without me since the baby is almost always fussy this time of night. So we get our shoes on, grab the stroller and off we go. We are all enjoying ourselves, and get just to the other side of the hill (not even a block away) when Joel starts to freak out. He couldn't see the house. I told him we were going to walk around the block (3/4 mile) and Mommy and Daddy and Addy were all going to go. Josh offered to put him on his shoulders and that did the trick. Once we got moving again he started to whine and cry again but since he was being carried we kept walking as we talked. I decided to play I Spy to distract him. This worked until Daddy spied a fire hydrant. Joel once again got upset pleading with us not to touch the hydrant. So we walked around it and further on down the road. As I walked I started to pray. God, please help me help him. Give me guidance, give me strength, and give me wisdom. As we passed a truck that was parked on the side of the road I saw its bumper sticker. Autism awareness. It seems lately that every time I start to doubt my suspicions, I run into someone with some form of autism. There was the time I ran into the facebook friend, someone at work was talking about her sister but couldn't remember the name of the diagnosis (PDD NOS-the same thing I suspect Joel of having). I prayed again and asked God "are you sending me these messages or am I more aware of these things?" I have always been a supporter of autism awareness. It is one of those things that I believe needs our support, and prayer, so we can find a cause and try to find prevention for it, if possible.

Our next step now is to pray and wait. Let me be honest...this part sucks, but I guess its growing pains, right?

A good day??

Today was one of rare good days. This morning he started to get upset because I didn't have any bread for toast. I told him we would go to the store and get something for lunch and breakfast. We got to the store and I asked him to get out of the car and again, he got upset. I had to show him that we were at the store and we were going to pick out something for breakfast and lunch.

I very rarely allow him to eat lunchables but today he wanted a lunchable. He chose a ham and cheddar lunchable. I was nervous about it but allowed it anyways. He chose yogurt pretzels for breakfast. (vs. donuts? oh yeah! sure thing buddy....no problem)

We got to school and he was a perfect angel...no fits, no problems. When he got to computers today I asked his teacher how he's been. Usually by now, when he's had a morning that's out of the norm, he's had a fit or two. She even told me that he had been the best behaved all morning (out of his whole class). : O <--------Shocked face

I went on and met with my Family Facilitator from Hand in Hand. She helped me figure out what my next step would have to be.

When I got back to the school to pick him up he had taken a nap, and he showed me his new boo boos. He fell down on the playground and scraped his knee. He fell down on the playground, PLAYING WITH OTHER BOYS!

So now here's what I'm thinking: Are his behaviors a result of my bad parenting? I know that there's definitely something going on with him, as we are unable to predict his behavior...but did I do it to him?

More disappointment

Today I received a call from the LSP. She is not going to recommend testing due to the fact that Joel had the desire to be social. Yes, he does...with adults. Still is inappropriate. He needs help. There is something wrong. Why am I the only one who sees this? I start doubting myself again? Am I overreacting? I remember back to a conversation I had with him in the car just yesterday. Well, not so much a conversation as it was a total meltdown. You see, last week we went outside and did sidewalk chalk. He got an ant bite. I told him to leave it alone and God will heal his body. Yesterday in the car he saw his ant bite was still there. He starts crying telling me that God doesn't love him, God won't heal his body, no body loves him, etc. Are these the normal rants from a four year old? I have taught young children for the past 5 years. This is the first time I have EVER heard these words/thoughts spoken from such a young mouth.

Instead of being a basket case all night I called my Family Facilitator and we agreed to meet together the following day to figure out our next plan of attack.

Are my suspicions wrong?

Joel still has his bad days and really bad days. Occasionally there is a good day mixed in. At this point (after 2 and a half years) we no longer expect him to have a good day but merely encourage him to not choke his classmates, or take knives to them when he's angry. Needless to say, we have been in survival mode for the past year or two. In talking to his teacher from last year I can't help but cry. Just yesterday as I spoke with our Summer Camp Director I couldn't believe my ears. When I asked her she looked at me and asked, you mean Joel's coming? In writing this now I am tearing up. I assured her that I would be working nearby so no one else would have to 'deal' with him.

The past couple of weeks we have been talking to a Licensed School Psychologist about having him tested. I told her what's been going on with him. I even brought her a letter from his teacher with some incident reports attached. The letter mentioned how he was very impulsive and how he has been ostracized by the other kids in his class because of his behavior. She came out and observed him for 2 days. (A day and a half, really). Joel sees another adult in the room and is a perfect angel. He interacts with her, does his school work, etc. This is not our normal Joel. The 'normal' Joel scribbles on his paper, uses black crayon on all his work and yells dammit in the bathroom. When things don't go quite right, he blows up. I even tried to set him up a few times. Partnering him with a little girl he always fights with in PE. I gave him a peanut butter sandwich in his lunch instead of the macaroni and cheese he had asked for. I made him wear shoes and socks instead of letting him wear his crocks. Not one outburst. I even went in his classroom because he usually is worst when I am around. Nope. I did notice he didn't do a lot of social interaction...'normal' for him. He talked to the LSP, his teacher and when we put him with someone in the kitchen center, he even talked to her. Of course, after this lady left I kept watching him and as the kids got ready to go to After School Care they all sat in a circle. Except Joel. He sat next to them playing with his backpack. This past weekend we stayed home most of the time. We did end up going to the grocery store which is usually a disaster. I can't do it without Josh much anymore. Luckily the cart at the store was big enough and I had the presence of mind to remember to bring the baby carrier (one of those you strap to your body). Joel sat in the cart and talked to me. He was a little intimidated by the new store but he didn't throw a fit. His normal behavior in the grocery store consists of him throwing a fit including taking items off shelves and throwing them at me and calling me names. Over what? Not sure what brings it on...its not consistent so I imagine its an anxiety thing.

On Sunday we had our Small Group Bible Study. We meet every other Sunday and it was our turn to host. As host you are responsible for food, drinks, and checking on the children. At one time when I checked on them I noticed once again, Joel was doing more parallel play. They were all sitting in a circle playing and singing and Joel was on the floor next to them playing with some other toy. Later some of the other kids decided they wanted to go to the kitchen to play with the 'kitchen'. I noticed Joel wasn't there. I checked on him and realized he was in the same spot, playing with the same toy. My heart sank. Once again I started doubting my suspicions...then something like this happens and I'm mourning/grieving it all over again. I refuse to give up hope but is it worth the constant disappointment?

Research, Research, Research

One day as I drove to work/school I was thinking about all of Joel's problems. The term high functioning autism kept entering my thoughts. I kept shaking it off. Through out my day at work it kept coming back to me. During my break at work I googled 'high functioning autism' to find out more about symptoms/diagnosing. It started to sound a little like Joel. I had started writing a journal about Joel and his days when we got back from the conference. I started looking through my journal to see if anything popped out at me.

When I got to the Medicaid office I sat and filled out my application. As I sat there I noticed someone who looked familiar. She was one of my Facebook friends but someone I hadn't spoken with face to face in at least 10 years. She came and sat with me and we talked about our kids. She mentioned some things that helped me realize that it wasn't all in my head. I felt very validated and ready to take on Joel's issues.

When I got home I started more research...trying to find something, anything to help me. I started praying and asking God to send me someone to help guide me to the help we so desperately needed to get for Joel. It was about this time that we started working with Hand in Hand and we also started Play Therapy through the Parenting Center. Our Hand in Hand Family Facilitator helped guide me through the steps I needed to take to get him help. Our Play therapist, though very nice, was not much help. We stopped going to the Therapist for now.

Somebody help me! Please!!

When I got home I started emailing people I had met at the conference and asking a lot of questions. I just wanted help! It wasn't but a week when Joel had one of his tantrums/fits. Addison was crying and I went to make her a bottle. When I went into the kitchen to make her bottle I heard her shrill cry. I knew something was up. Joel came in and told me that he had done something to Addy. After I had gotten Addy off the floor and somewhere safe, I had him show me what he did to her. He had yanked her arms so hard it pulled her up and out of her car seat, where I had put her. I sent him to his room so that I could calm/quiet the baby. After the baby had calmed down I went into his room to talk to him. He told me he had wanted her to be quiet and she wouldn't. He said he was trying to hurt the baby. At this point I had been advised by the school that I was required to get Joel counseling/help, so I had his teachers documenting every anger outburst/tantrum. I felt like I needed Joel's pediatrician to know what happened as well as making sure the baby was ok. I had just been in there two weeks prior crying about how he's not normal, like the doctor had kept telling me, and that I don't know what else to do. I wanted him to document it that Joel had admitting to wanting to hurt the baby and also that he actually did succeed at hurting the baby. When I left they had told me they would do referral, if needed. I knew now that we have to get him on Medicaid and it was time to stop waiting for Medicaid to get their acts together. (I had turned in my application two weeks prior).