End of the School Year!! New Priorities!!

It's the end of the school year. Thank You God, We have made it though another year. This year has been tough. Brandon is more aware of his condition. He tries harder but then he also fights harder too. He's moving on to the 4th grade. Wow.. I have looked back in my blog and it seems like yesterday Brandon was an undiagnosed kid unleashed on the School system. I am sure they loved me. I tried to tell them. I am working on a new thought of an outside group of kids playgroup that meets so Brandon has kids that he grows up with. Right now he does not have anyone that he plays with on a regular basis. I need to work on this. By creating a social group for him he feels normal for him. Maybe this will help?? we'll see?? Keep you posted!!

It looks the same, it is the same

I spent tonight looking over my past posts and I am struck how it just goes over and over. Life with a son who has autism is hard. Last week the school said that Brandon baffles them. I agree, he baffles me to. I never know what to expect. Everyday I pray that the phone does not ring at work with Brandon screaming in the background. I pray that he has not hit anyone. That he is safe. That we make it though another day.
Do the other families feel like this?
Can anyone that we know, know what we go through everyday to just make the day a good one not look at us and say you do what??

We start the day the night before by prepping for the next day. What's going to happen.. What to expect... Robert has to wake up Brandon and rough house with him. make sure he is dressed correctly..make sure he brushes his teeth has on his shoes and glasses..then we get down stairs make sure he eats ..takes his medicine.. double check that he took it and did not forget..does he have his coat and backpack?? . drop him off at school because the bus was to loud...then pray he makes it through the day without and incident and along the way he learns something...pick him up at 5:15 ..ask how his day was...I can look at him and know.. if he's waiting for me and looking down it was a bad day...if he is hopping and laughing it was good and he's allowed TV time....go home and start homework while I am cooking dinner...fight with him to do it while I am not standing right beside him...Robert gets home..we eat dinner..finish homework....homework can take up to two hours depending on if he got everything done at school that day...go upstairs wind down and take baths... have a dance party in our bedroom with the ipod and flashlights...Give Brandon his night time meds... lay out his clothes and talk to him about the next day..kiss him and get the best hug ever because he looks you in the eyes and says "I Love You, Mom." and squeezes... then he says "Can I call you when I'm sick?"... I stop..say "yes, Brandon." He has to ask the same question everynight..he has for 4 years, since he learned to talk.

Yes, this is our day. Everyday. Some nights are different..we have boy scouts..gymnastics..tae kwon do but essentially it is the same.

Always the same... except for the days that it's not, then watch out.

All is fun in love and autism...

It's like the wack a mole game. Just when you think everything is good, trouble pops up somewhere else. You whack that problem(not really). Then when you think all is good then up pops another problem. Dang. You try to keep your cool, you try not to scream but then you take care of that one and POP. It's like a war. But it's never ending and it's no ones fault. Not the family, not the child, not anyone. You just want to rage at the injustice of it all, to place the blame somewhere, to fix it but you can't. I blame myself alot. Why, because I did not catch it earlier. My dad says that's dumb, we had no idea what it was and had every test ran and even the doctors did not catch it. It's like I'm the Mom, I should Know these things. Stupid, reason really but just like war, it doesn't make sense.
I spend alot of time reading about autism but none of it makes me feel as good as reading Temple Gradin. All the rest of them say use this or that. I can't afford half of what they say. They lucky thing is that we are in Williamson Co and they have the best special ed system. The autism specialist comes out to help and Brandon has his own Teachers Aid. Thank goodness we looked ahead and moved here. Like making a strategic move in war you have to keep ahead of the game. Autism feels like a war zone. I pray for our family everyday. I pray for my husband and I because this is hard. Autism is hard on the family. I never know if what I am doing is right. I just try to do the next right thing. and make it fun in the process. You have to keep your sense of humor. Laugh. ALOT!!!

On enforcing the rules..

This is the hard part. You don't want to hurt or damage but you also can't lay down and let him walk all over you. There are people who say we are hard on Brandon but what they don't realize is that if you go outside the rules or give an inch you've lost control. We enforce the rules here at our house and everybody is involved. I hold Brandon just as responsible as his sisters. We put Brandon up with the same rules as his sisters. He also has the same consequences. We don't verbally abuse or physically abuse the kids which alot of people do. Alot of people tend to let all this get to them...the frustrations I mean. If Brandon hits someone we go over what happened and work as a family as to what the right thing to do is. We role play this with Me Robert and his sisters. This is very important. By role playing, he can work on the socially correct way to handle things. We do spank if the offense is serious enough, we also use the withdrawal of toys, computer games and XBox as an attention getter. By placing a consequence on the action we are helping him to recognize what he did. Brandon used to drive me crazy because he would hit someone and when i asked him why he would say because I did. This would go in circles. We did not have cause and effect down. If you do this, then this will happen. If you lie or hit then you get in serious trouble. Picking up a stick during recess and ignoring the teacher when she tells you to put it down and THEN getting sent to the principals office is semi serious. Running out into the street is serious . Not paying attention needs work and encouragement. We work on that ALOT. Now some might not agree, some might say that since he has autism I should not do anything but I dare say, walk a mile in my shoes. Walking that fine line between rules and hugs and discipline is a hard one for any parent. The best part is when it was over is the hugs and learning how NOT to do whatever started it in the first place. Love does answer alot of problems but Tough love answers the rest.

A day in our pajamas..

Days like today are rare. Just lying around all day in our PJ's having fun. Laughing, tickling, singing, dancing. Just the fun, smiling days that are so rare. Hugs all day. When he wants something he asks and if I say no he doesn't go into a fit. Today he even acted like his sisters. He got a little pleading face, and stuck his lip out and said PLEASE.....How can I say no to that??It's days like today that make you think that everything is normal and what life would be like without the arguing and little quirks that make Brandon so different. Then I kick myself for my pity party and just remember to be grateful for today. That's the hard part for me is the pity party's and the stress I put myself under for not seeing what was happening earlier. For not knowing. For not going to the right doctor. Here I go again... I AM grateful for today. I am blessed to have my kids and blessed to have a day in my pj's with a laughing smiling little boy. Hugs all day. As his older sister was saying today... Ready.. Set...Toothbrush...(LAUGHING KIDS ALL AROUND).

Getting through the school year

We'll I never thought this year would be easy, and I am knocking on wood... but While he's not having a perfect year, he has not hit anyone in at least 6 weeks!! Yea!! Yes, it's sad to celebrate the fact that your child hasn't hit a teacher in 6 weeks but it's the small victories that matter. I spend every night working on homework, I work during the day, we hit gymnastics, and tae Quan Do. The fun never stops. I had spent so much time not attending after school activites due to Brandon's Autism. I finally decided that it might do him some good. The hard part is telling where we are going. Several times..
Another Point... Brandon has a new assistant that is helping him. Mrs. Pope. Brandon cried and argued for the first few days because he missed Mrs. Hale. He decided he wanted to be called "B" instead of Brandon. I called his teacher to make sure she knew he was mad at Mr. Guinane(the principal) because he moved Mrs. Hale. I'm sure that would go over well for him to attack the principal out of the blue. He finally admitted he like Mrs. Pope.. I just know that it is just like Brandon to hold on to something then remember that he's mad and jump on Mr.Guinane. I'll keep you updated....

School Starts..

Well, what a month. School Started, new year, new teachers, new adjustment period, homework, Arrgggg!!! I started by trying to warn my sons new teacher that it would be difficult and that we need to use different methods to help him. After he broke down while trying to do all the homework that was sent home I emailed her after she asked how was it going. He broke down twice while trying to get done with all the assignments. Hopefully, we'll work together this year to make his year successful.

So it starts.....

Well, Brandon got kicked out of SACC a couple of weeks ago. It took me a while to get back to blogging. I did not want to rant and rave. Brandon was only allowed to get three demerits for the whole summer. Well, we did not know this. That's usually his limit for a day not the whole summer. Well, they said they had made concessions. hmmm. Well, the girl who wrote him up met my husband at the door with a smile and said Brandon won't be able to come back, he got a demerit yesterday. When he asked why it wasn't given to me YESTERDAY, she said well I forgot to write it up so I did this morning. Well my husband told him well I will call my wife and she can work it out with you. I did not call the boss, but her bosses boss. We talked about the Williamson co policy on dealing with kids with special needs and his IEP. My complaint with this girl was that she could not deal with autistic kids, but she was in charge of giving him demerits? Her attitude toward my husband, smiling like this is going to be Brandon's last day? I was told that this would be her last time working with him. We gave them all the tools we work with. I gave the director all the stuff to help that we use at home and at school. Brandon did get in trouble, don't think he didn't. He had consequences. He did throw a toy at the teacher. She was trying to get it from him but pulling it from him was a bad choice. ANYWAY, I know that Brandon WAS in SACC the next week. It starts... The battles to make sure he gets good care, the battle to make sure he gets treated right... It starts for this year anyway. I fight everyday, every hour, every second. And I will continue to....For as long as it takes....

And fun was had by all....After a lot of work

Well we went to the redneck paradise of Dollywood for our vacation this year and had a Great Time!! I really thought it would be a waste of time but between the rides and nice cabin we had fun. The only hard part was getting Brandon to have a good time. That was a LOT of work. The funniest time was when we were walking into the park and a nice lady took our picture for us, the lady said ya'll have a goodtime in DOL-LY- WO-OD. Yes I am from the south born and raised BUT I don't take an extra syllable to say every word. The funny part of this is Brandon saying to everyone "We are in DOL-LY- WO-OD". It was priceless. I will say that the hardest part was getting him to ride the rides. Once we got him on one he was fine. The wet ones were the hardest though. He fought tooth and nail and then was like "OK Let's go again!!" This was part for the whole vacation. He loved the cabin and wanted to stay their ALL THE TIME!! We only got him to leave by saying if we go back to the cabin you will have to go to bed. It was a choice, made by him you can do what we want to do or you can do the lesser choice. He always made the right choice but we had to give him these several times. These were started by don't want to ride the swings... choice, then OH I had a great time. Then don't want to get on whatever ride....choice, then Oh I had a great time. After 5 hours of this the fun on me and my husbands part was a little strained but the end result was good memories for all. Brandon was not tall enough for the roller coasters but he watched each one. We will be back to ride those, he told me. That may have been the problem all along, who knows... His sisters had fun, we had fun, Brandon had fun.... That's all that matters. oohh, I came home with chicken pox, everything can't be perfect. Brandon keeps looking for the chickens though...

I hate to be right...

Well Brandon did NOT get his meds over the weekend. I put instructions in the bag with the bottles and once again he came home with just about the same amount of meds that he left with. I really don't understand how you can see the benefits he gets from his meds, acknowledge that but not give them?? Consistency is the key with a autistic child. He has enough to deal with without being put back because someone did not give his meds right. It just makes me SOOOOO mad!! Well, we will be gone for a few days ourselves so a lot of one on one time with the family is just what we need. Getting him back in tune with everything and having a goodtime doing it. The hardest thing about being right is you don't win a prize, you don't get your name in lights, I really don't want that, I just want my son to be taken care of. Being right ... I would give that up anyday for just knowing he's OK.

A day off but not really..

Brandon is my son from a previous marriage so he goes to his dad's for the weekend with his sister every now and then. Not to often since my ex doesn't have the appropriate facilities to manage them nor the time. I don't push the issue as I worry ALOT while they are gone. Will Brandon get his meds??(I have had to call DHS a couple of time to force the issue) Will he properly supervise them.(He has left them with neighbors while he had something to do....Meanwhile one of them gets attacked by a dog and the older one gets bit trying to defend Brandon. I found out when bathing her that night and found huge bruises from the dog bites.) Are they getting fed?? Is Brandon getting enough attention or will he act out when he gets home because of the inattention all weekend from his dad? If they are at the grandparents I don't worry as much but they don't agree with my methods, they think I am just medicating him and should be using dietary means...Whatever. I am trying to make sure that Brandon is able to function as normally as possible and not treated as a freak because he can't eat fruit rollups like all the other kids, he can only eat tofu.. Like I said whatever. If it makes Brandon feel normal and he is able to function in this world just like everyone else I am for it. So like I said while he is at the ex's I am having a day off but I worry, I pray, and I put it in God's hand and keep tabs.

The OCD part of it....

Brandon also has Obsessive Compulsive Disorder that really hampers him. He has totally bitten off one fingernail, which really grosses me out and he says it hurts. I guess it does but he can't stop. He is on medication for this, I think we need to go back to the doctor. I don't pick up on half the stuff I am sure he is ruled by. The stuff that he is ruled by makes it hard for him to function. We try to help in any way we can to work through what is going on but it is frustrating sometimes. I hope we can get him back in line before school starts. The worst thing about Brandon's OCD is that he gets so mad when we do not let him go through with whatever he is needing to do or go. As a Mom you wish you could take some of the anxiety away and help him conquer this but I guess this is one that we can help with medication but like autism he will have to deal with for the rest of his life... I guess that's what Mom's are for just to help to try to make it better. Try being the operative word here.

The persistent Arguing......

Like a dog with a bone that he can't let go...There are times I just want to scream. I know in my mind that it is his disorder. I know logically that he is arguing because something in his world is not right but emotionally if he argues one more time..... Well, I'll suck it up and remember that this to shall pass. This is the hard part of Autism that people look at you like you are a bad mom because you're letting some snot nose kid argue with you, or that you are coming down hard on a child who just asked why one time that they heard(they missed the other 5,365 times that day). I wish there was an out on this one or some kind or button to push to let them know that what they are doing is not OK, I wish there was a button to push to give me a muscle relaxer when this is coming on for him. No such luck. Tonight it was the banana. He wanted a banana. I told him we had already had dinner and dessert and we were not going to have a banana. (Now this might seem like a small request but I have to draw the line of when we eat and don't eat as to give order and not end up being a fry cook all day) What he was really mad about was were had to go to the store at an odd hour, right before bath time. This is unusual since I usually go after work and before we go home when I pick them up from SACC. This started the arguing and grabbing at everything in the store until I finally swatted his hand. That really made him mad but he stopped grabbing everything. The mouth kept going though. Finally he let it go and had his bath. When drying him off his tummy growled, I got him the banana. Now you might say you caved or bad mom he was really hungry, but had I given in while he was arguing I would have lost and been subject to more of these tirades day and night. You have to stand firm. This way it was due to real hunger and not because of the fit he was having. (He had already had a full dinner one hour before). Well with no button of muscle relaxers to push and the fit over he went to his next topic, I don't want to go----- fill in the blank. Like I say in my opener, don't argue just listen and learn....

The Creative side...

The most interesting thing is looking at his drawings... I love to figure out all the stuff he puts in his pictures. Like the one he drew of Robert and the X-box. He drew the X-box and Dad and all the cords, the table and the TV. The boxes and pictures on the boxes. Most kids would miss that but not him. It amazes me. I have one on him and his hampster cage and the fish tank behind it. He doesn't miss much. I figure I should get him in a drawing or art class but sometimes just getting through the day is a challenge so extras are at a minimum right now. With a little more maturity under his belt we will see. We do let him draw on every extra piece of paper he can get his hands on, and I keep extra pens and paper in my purse just for that need. But we do work with playdough and all kinds of stuff just to keep the creative side flowing... Who know maybe some day it will payoff.... My brother works with alot of autistic adults who code for him. He has to remind them to eat and go home. He said they were the best coders he had. He said give Brandon some time and he will work with him on the computer stuff... hmmmm Bill Gates here we come??

Sensory Problems

It's always hard to see other children run and play in the sprinkler and Brandon stay on the concrete because he won't run on the grass. I look back and remember when we would go out on the grass and if Brandon fell in the middle he would hold up his arms and legs and rest on his middle kinda like sky diving. He cannot stand to run in the grass. We have solved it with using sandals but you can tell that he still stresses when grass or mulch gets in the sandals.
The bad thing is that clothes and smells get him too. The advent of the tagless t-shirts came right on time(Thank you Hanes) for Brandon. He hates tags in his shirts. Flowers will never live in Brandon's house( he makes me move them to another room) the smell distracts him to much. But he loves the smell of foods, he can tell you what you are having from a mile away. I love it when he comes in the kitchen saying "what's that smell, let me see what's in the pot?? "He just wants to know if he's right. He is unique.. and one of a kind.

Different thoughts on funerals..

Been gone for a while, my grandmother died this weekend. We had a wild trip out of town. I thought it would really throw Brandon out of whack but he really did well. A few thoughts on the weekend from watching him deal with all this. 1. He went up to the coffin and laid his head down and I asked him what he was thinking. He said, "I'll really miss her." The funny thing about this is that she has had altzheimers and has not been around for a while. I asked why he said that and he said that is what you say. I guess he knows that there is a proper response to a funeral. 2. He asked what we were doing when we went to the gravesite and I said we were going to bury "Mom"(we called her Mom). His response was "Can we help? I forgot my shovel!!" Well, after I stopped laughing(Not out loud, as not to hurt him) I explained that there were people there to do that and we were just going to go say prayers for her. He seemed really put out..

I love my Brandon....Things are never boring, and there is ALWAYS a fresh perspective.

The effects it has on the siblings

What a week. My oldest girl decided that she would tell the teachers at the daycare that she would put the suntan lotion on Brandon when they were swimming. Brandon looked like a red light bulb when he came home. She really wants to help. And she tries to be responsible for him. We try to tell her to be a kid, you'll be an adult soon enough. I think that the siblings of autistic kids try to be useful and get used to acting like an adult when having to help get the autistic child from one thing to another. Even my younger child will try to help Brandon understand one thing or another. Especially when she gets tired of hearing a question over and over, she'll answer sounding exasperated. We try to explain what is going on and why he acts like he does so that they don't feel excluded or like they have to help in some way to make it better. My oldest felt sooo guilty for forgetting to put the lotion on him. I told her it really isn't her responsibility but you do need to do what you say you are going to do. We followed up with teachers and explained that she dose not need to be the one responsible, they do.

I hope I can work through this with both girls. I know that eventually I will probably get counseling for both the girls just to deal with the effects of having a sibling with autism. There are not alot of resources where we live to deal with this. HMMMM..But I think given where we live it's coming, it's just a matter of time. but how much time do I have?? or do they have??

The funny things..

My mother in law reminded me about a time when I thought my son was having seizures. I had asked his doctor about this and was really scared. When I would looked at him he would stop and be blinking over and over and over. I though he was having some kind of seizure. He didn't look like he was suffering or get tired. He would just have this look and blink. My boyfriend (now my husband)came over one night and saw him doing this and said his name. He stopped and looked at him. My boyfriend then started blinking his eyes just like him and Brandon got really excited and blinked back. Well from the start, you can't stop a seizure by saying his name. What Brandon had discovered was how to blink and that he could control it. He also learned that he could communicate. I can still see him blink...blink....blink...

Yes this is just one of the things that Brandon would do that when I look back now, I laugh. Then I was just trying to fix whatever was wrong. Little did I know........

The signs I missed...

Well after that diagnosis I remembered looking online at autism and OCD but thought maybe but one of these doctors would have said something... WRONG. What I missed was the night terrors(horrible at 4 in the morning), the inability to switch from one thing to another, hopping and flapping, inability to talk until close to 3, the tantrums, insistent on me scratching his arms or legs, sensitivity to sounds, the lining up of his toys in lines all over his room, he can't locate his shoes in the middle of the floor, sensitivity to foods and textures, the tag in his clothes bothers him to where he can't function, he can't get glue on his fingers because then he spends HOURS picking it off, you can't get glue on your fingers be cause then he wants to pick yours off, can't sit still in his chair needs to rock or move, has a hard time staying on task, LOVES to draw intricate pictures with alot of details that a 7 year old would normally miss, can't walk on grass without shoes on, can't go to a Gotta Bead place with out him on his hands and knees picking up all the beads, is not close to his friends but everyone loves him, just quirky, will stare off into space, won't look at you unless you request it, inappropriate behavior, will do what the other boys tell him to do because it's funny without thought of the consequences, will respond to any threat with extreme force, has had to be pulled out of the class by the principal for yelling at the teacher, choked the principal by grabbing his tie(whoops), will defy authority unless you get his number from the git go, if you don't start with the upper hand you are screwed, loves to dance and spin, ALWAYS has to have something in one hand........ I could go on and on and on....

Now I can look back and see the things I missed, the signals that mark a child an autistic child. I knew that something was not right but all his medical issues masked the real problem. Could I have made a difference earlier?? Probably, but I won't beat myself up over it. I do the best I can EVERYDAY.

Today he bit someone in his class, I treat him just like his sister, there are consequences to every action. He understood that you cannot bite anyone and we did a role play with the WHOLE family on what to do if someone pushes him again. I think we got our point across.
Everyday is a challenge but it's never boring around here...

Just the beginning...

I have been through all the moments that most mom's of a autistic child have been through-Did I eat right, did I bump him wrong....Well I know that a lot of things were going on when I was pregnant with him. I had left my husband before I knew I was pregnant, had a baby already who would be 18 months old at his birth, had a difficult pregnancy due to him laying on my cyatic nerve, was on medication so I could walk since I had to work, I worked up until the birth so I could take the full time off to be with the baby, I was 3 hours away from my family....the list goes on and on. When I did have him he was sick all the time, I really wondered was this child going to live?? He had pneumonia 4 times before he was 2. I finally moved and changed doctors, they told me that I needed to go to an ENT who looked at his ears and we had tubes put in immediately. They told me that he would need speech therapy since he was already 2 and could not talk(his old ped told me not to compare him to his sister, that he'll catch up). I did this, he still was sick and throwing tantrums. We went to a ped pulminologist and found out he had asthma, we had his tonsils and adnoids out. He graduated from speech therapy. Still having tantrums and other issues like just wanting to rock and getting in trouble at daycare. He only wanted me to scratch his arms. He would only eat certain foods. I really could not get the doctors to help. They ran every medical test there was. They finally said let's go to a psychiatrist since we can't find a medical problem. By now we are in Kindergarten. I tell her about the problems we are having and she looks at him reads the notes from the Kindergarten teacher that I get daily so we can keep track of whats going on at school(mostly bad). She looks at me and says you had not idea he was Autistic?or Obessive Compulsive??as he is stacking the blocks in the same way the third time??