Autism As A Whole

My first son, Buddy, lives primarily with his Dad which is where he attends school. This is a different school district than I am in. I ask his father about school and he keeps telling me he is doing great. I thought everything was okay because I had not heard anything different. Until the phone call I received yesterday as I was drinking my first cup of coffee of the day. The call was to reschedule a meeting that I didn't even get invited to.Imagine, going through the school year thinking everything was fine until someone calls you to reschedule a meeting that you never heard about. Yes, this is what happened. Communication is important with any school but especially when you are dealing with special needs children.  Oh, I got the letter from the school about the meeting today. It was postmarked yesterday!!!

Well, the teacher just called me. She says this is a follow up meeting. That means that there was a meeting in the past and guess who was present. No one!!!!! I wasn't even informed about the meeting. I am so mad. I would have been present and he should have been more aware and advocated for him.   OK... I keep bouncing on and off the computer to write this and I just got out of the meeting with the school. His father was there and every other person that works with him was there as well. I found it disturbing that my son was reading at a level zero in September but he is now at a level 5. He should be a level 8. At least he is improving right?

He has a 504 plan and it has not been followed. Although I have yet to be informed of the final meeting either. I know he was eligible.They claimed that they never received the script from the doctor for Occupational Therapy. I knew that wasn't true because I was the person who called and dealt with the doctors to get everything they needed. His father brought one to them and I had three of them faxed to them. Needless to say she went to look in his folder and Tadah, there it was, sitting in his folder was the script from the doctor for OT. I wanted to jump through the phone, as I was doing a conference call meeting. All this time he has not been getting OT and they had everything they needed to start. Grrr... this makes me so angry.

Well to jump ahead to the point he is having difficulties all the way around. He cannot focus, is easily upset, seems like he is in another world, cannot seem to process what he is reading and sometimes even what the teacher is saying to him. He is a sweet boy who loves school but seems to have a really hard time with it. They said he even has trouble following directions. So I said I want him to have a full evaluation. They were in agreeance. The pediatrician wants him to see a neurologist and so does the school. We have an appointment to discuss the school meeting with the doctor on Thursday. We shall see how it goes. One day at a time with both fixsts clenched, gritting and grinding my teeth praying I don't kill anyone. Wish me luck.......

Last night as I was doing a little grocery shopping with Chucky and Pumpkin at Hannaford a woman approached me asking about the device my son was playing with. I explained that it was an iPad that he got for Christmas . She asked what it did and inquired if they were for children. I told her that we use it to help him communicate and also to teach him. They are not just for children but many children use them. I did NOT mention that Chucky had Autism. It didn't even cross my mind to tell her this.

I question myself about why I didn't take the opportunity to educate her about my son's diagnosis. Why not educate an open ear? Was it for fear of rejection or maybe just an avoidance of the topic? Although it may have seemed like a perfect situation, at that moment, I didn't need to. He was calm and was watching Curious George. I don't feel there is a need to point out to everyone that he has some difficulties. I want them to know him for who he is and his name is Chucky Cheese not Autism. The woman continued to chat about her son and Curious George and the iPad when my son began flapping and screeching.

It was at that moment that my heart dropped and I felt like I wanted to run in the opposite direction. Instead I tried to calm him and maintain the conversation despite my fear of a rude ignorant comment. I misjudged the woman and I am sorry for that. Instead of making a nasty comment or judging my son she calmly asked me if my son had Autism. Yes, you heard me right. She asked me about my son without coming to her own conclusions and without making false judgement.

This is the first time I have encountered someone that was able to question the behavior without judging my parenting and being critical. My offering the information wasn't needed. While I was cringing and looking for a quick exit she was connecting and inquired. Maybe she saw the instant fear of rejection in my eyes or the look of complete tenderness in my interaction with him, but she got it and was compassionate. I appreciate this and encourage anyone who is unsure about a situation to ask. It feels better than to have someone gawking or making rude comments.

This lady made my day. Not only was she open to attempt to converse with my son but she was also open enough to ask questions. She wanted to know more which is how we spread awareness and how we open the doors to acceptance. The story doesn't end there because she also looked at me and expressed how wonderful she felt I was doing with my son. This made me feel as if I was invincible even if that invincibility only lasted 5 minutes. It was worth it. So, to the woman in Hannaford I must say thank you. You gave me more than you could ever know just by asking a question and exchanging kind words and a smile.

My son is self injuring again. It didn't stop for long but he picks up something different after a while. It started with head banging, then biting himself as well as others, then pinching his skin and now he skin picks. There are other things he does as well but these actions were very constant. He will stick touch hot things and sharp nails. He also can go outside in the freezing cold half naked.(NO... I don't let him. He slipped onto the screened in porch once or twice LOL) I was really concerned in September because he had made marks all over his arms, legs, and back of neck, so I brought him to the doctor who discussed meds. I am really not sure how I feel about them. They talked about Tenex which is pretty safe from what I have read but I would rather not put him on meds.



Without medication, what do I do to ensure that he does not self injure? I have tried using stickers to encourage him not to pick and I have tried giving him alternate ideas to satisfy his sensory needs but I think it is the feeling that he perceives when he is picking. I am going to try redirecting him to a positive alternative. Not so sure what that  may be but there has to be something. He used to have a pacifier and we stopped that because of his speech therapist which is when the biting started. Eventually he was biting his pillow case and now that that stopped he was pinching himself. I would honestly rather give him a pacifier again. I know that won't work now though.

Questions remain and answers are hard to find. When parents talk to the doctors they are so quick to put the child on medication without looking into the root of the problem. I am looking for more natural remedies to resolve this. Last night he was playing with a rubber band. I thought it was okay because he wasnt making himself bleed. That's an improvement, right? Wrong.... instead he left a welt on his arm. He didn't even react to it as if he were in pain. I found this concerning. Although I don't like to make a big deal of these situations to my son I did feel it would make a great awareness video for others to see first hand how a child on the spectrum's words, and facial expressions can mean two different things. Here is the video of my son when I asked him how it felt when he flicked himself.



I told him that it wasn't nice to hurt his skin and that it makes mommy sad to see him hurt himself. I am not sure that he understood and I am sure that I will have more situations like this in the future but at the moment I will continue to encourage him to engage in positive ways to stim. I think this is a stim.  Any thoughts on this???

My sister is doing this wonderful blog hop and I am going to attempt maintaining it. Here is what this hop is about: This is a monthly Blog Hop with weekly updates. Your first post should be your goal for the month, why it is important to you and what steps you are hoping to take to accomplish it. Then 2 updates, then the final week will be for telling us how you think you did. You don’t have to remember that. Each week,she will remind you what the post is supposed to be about.

Anyway, pick a goal, any goal, write a blog post about it, link up and let’s all support each other toward actually accomplishing something this year!

It snowed today here and I don't mean flurries. I mean it really snowed. The kids didn't have school and although the plows have been going through the roads are still covered. The kids wanted to play in the snow but man it is cold out there. I used maybe. I love that word cause it holds them off and while most times it is really a substitute for no to prevent a meltdown they rarely argue it. I know that is bad but I never said I was perfect.

I was in a lot of pain today from my back and I can't lift my arms over my head. This means I have to ask my daughter to brush my hair. Can we say revenge. I must confess that on school morning I give her the option to brush her hair and well if it isn't done in time I will brush it and while I do not intentionally yank her hair, I am not as gentle as I would be if I was doing her hair because she asked me too. So.... yeah, she is not exactly nice about brushing mine. I decided I would take a shower/bath. You know where you sit in the tub with the hot shower streaming on you wash up and then plug the drain.

The hot water felt wonderful on my back and neck and it filled the tub which was relaxing. Or at least it was supposed to be relaxing. My Chucky Cheese decided that he needed to be in the bathroom watching Spider man as I was taking a bath/shower. He was talking, really yelling as he has no volume button, about how spider man is just a person in costume. This is a new obsession that started when Santa and his friends came to his school. He brought Dora, Frosty and Rudolf. My son informed me that it was not really them because it was a man in a suit. When I inquired why he thought that he said,"Me saw his neck." Now he feels every character is just a costume, and well, he isn't that far off.

When I got out he wanted to get in. Well, actually he asked if he could get in with me which I replied NO. So I got him into the bath which he really loves. I don't know if it is an ASD trait but water is really soothing to him and he has no fear of it. This is both good and bad as he has already learned how to swim and can go under water without plugging his nose. On the other hand he doesn't understand the dangers either. A couple summers back he ran into the pool as my back was turned. This was before he mastered swimming and well, maybe mastered is the wrong word. While he can now swim, he has hypotonia so he tires rather quickly. That makes me nervous but the tub is pretty safe. Safe as long as he isn't trying to dive off the side of the tub. LOL... He loves going under water and insists that I count for him to ten. He can remain under for about ten seconds, maybe a little longer and he loves it.



The tub was my savior today. He stayed in the tub for almost two hours. I know that is a long time but he loves the water, and when he got out he was to focus better. Instant therapy!!!

My four angels are all equal and special to me. The oldest was an only child for five years and then I gave her a sister. Her sister was the easiest child I have ever had. Maybe I should have stopped at two is what I think in my down in the dump moments. But, then I ponder this.... What if I didn't have to go through the struggles I have gone through? What if I didn't have to deal with Early intervention. What would my life be without my wonderful boys?

I read a blog hop today called Words of Wisdom Wednesday.  In Words of Wisdom Wednesday she  posts the answer a question she asked  the girls this week.  It is a great conversation starter and gets their minds working. She then asks you to ask the same question to your children and post their answer on your blog.  At the end of her post there will be a linky for you to join up with which will be open all week.  She just asks that you link to her  in your post so others can hear about Words of Wisdom Wednesday.  In fact, if you would like her button it is in her sidebar.

The question this week is:

What do you think happens to the garbage after we throw it away?

I decided that it might be interesting to see what my 4 year old son with autism would say about this, so I asked.  At first I got a very short and quick response…. which I will translate for you because he still has some articulation issues, “In the trash can.” I responded,”But, I mean after it leaves the house”, to which he, again really briefly, responded,”dumpster”. I probed some more and he said, “Out your hand in can.” Finally I said, Where does the garbage go after they take it from the dumpster? Where does it go?” He said, almost quizzically,”to the dump where they take it and send it to Australia to Jake. ” I then asked him why and he said “so he can play with stuff.” My son totally gave a new meaning to “One man’s trash is another man’s treasure” LOL… I think the reason he said it like that was because we sorted through some toys and stuff. I think he is thinking Jake will get the toys. I don’t know… I can relate partially but as I said once before in my blog here… we do not often visit the planet Earth. We live in the literal planet Autism. Welcome to my world.

I read an article today titled , I Have Asked You A Hundred Times!. It really hit home. I have been having a torturous time with my tween. She is just lazy, ridiculously lazy. It drives me insane.
I used to have her take a shower in the morning but she was never ready when the bus came and would be leaving with wet un-brushed hair. I now insist that she take a shower at night but, it is still a battle. Do your tweens argue about a shower? I mean you would think they would want to look their best right? I am so confused, so I decided to take the natural consequence approach.

I asked her to take a shower and if she chose not to that was her choice. I told her that I would not take her anywhere if she was not showered. Do you know the girl didn’t shower for almost a week. She didn’t care that I wouldn’t let her sit on the couch or at the table during meals. She didn’t even get the point when one of her friends told her she smelled.

The end of that was when the guidance teacher called me telling me that she had a smell on her. I explained the issue to the counselor and she assured me that this is a normal phase for tweens. Although she said it usually goes on with boys. I explained how I tried to allow her peers to influence her and it didn’t work. So, now I feel as if I have to be on top of it. I will not remind her anymore. It is now that she takes a shower by 7:30 or she goes to bed at 8:30 instead of 9:30. I think that is reasonable.

My sister recently wrote a post titled The Mom (Super Human) in Me -VS- The Human in Me. I encourage you to read it cause it is a great post. It really hit home for me. I too struggle everyday with my human form vs. my Mom form. Do You struggle with this too? Do you find yourself fighting the urge to say,”That was a stupid thing to do?” when your child trips over the shoe they left in the middle of the floor instead of asking if they were ok? It may sound mean but come on, I know she has brains and I wish she would use them.

I am only human and I am not trying to be mean. I love her so much but the arguing has got to stop. I hate yelling at her and I find myself so frustrated with her actions, or lack of actions that I cannot enjoy her presence.  Does that make me a horrible mother? She wants me to listen to her sing and while I would love that in the back of my mind all I can think about is the fact that I want her to clean her room and take a shower.

I can take a little of the blame for her behavior. I totally cringe in saying that when the going gets tough and I don’t want to fight with her, Mom gets going. Off to do something else, leaving her to do, not what I am requesting her to do, but what she chooses to  do. No, I don’t let her roam the streets, not that she would get far cause we live in the sticks, and I will not allow her to go out. Well, maybe I do … *cringe*. There are times that I am so annoyed and I justify her going out as we both need breathing room. This is just one more excuse.

I challenge myself to be more consistent but not to yell, ummm… or scream. It has to be possible, Right???? So, I shall state clearly what I expect of her and take the things that mean the most when she selectively goes deaf. LOL! Sometimes I find it so hard to try to get control of the situation because I have a special needs son. He takes up so much of my day and somehow… when things get tense with Krystal or I am trying to draw the line, in chimes Chucky and he needs me NOW!!!

How do other moms handle this? I think I might go crazy. I used to think that after you have three children, you can add more and it didn’t effect anything. For instance my “wife” as I call her, used to ask me to babysit “her” two girls, which are really mine, but she would always ask,”Are you gonna be ok? That is a lot of kids.” At that point I would respond with,”Are you kidding? After three extras don’t count. They all occupy themselves and whatever bickering could occur can’t be any worse than with three.” She always thought I was crazy, but now….. forget it. I cannot take on more than one more child.
My maximum child occupancy has changed from unlimited to five. I find myself doing Math and really scheduling things. If Chucky goes to his dad’s house I can have at least two kids over but.. if he is home the parents must stay. I do it at birthday parties too… I am such a wonderful host..LOL… I will see how many moms or dads can stay through the party and lend a hand. Most of them are well aware of the situation and are more than willing to help.

This overwhelming barrier of motherhood involving special needs lets my daughter ignore my requests and since my brain cells died after I had Charlie, I can’t remember anything.  Do you have the same problem? How do you juggle it?