Autism As A Whole: asd

Showing posts with label asd. Show all posts

Thursday, July 19, 2012

Releasing the Anger and Hurt

Unknown 7/19/2012 0 Comments

Guess I am just a slacker, I don't know how some of these moms do it. I am not good at managing time and I tend to consume myself reading articles, helping other parents and researching medical stuff. The end result seems to be NO TIME TO BLOG.

So far I am surviving, cant say I am dealing with all of this great and my hopes are high. I cant even try to tell you how I feel because I don't know. I am angry, sad, scared, amongst many other emotions that I can't even describe. I still haven't gotten any test results back but they did run the full Mitochondrial test and they mentioned Leukodystrophy. It is so scary to even imagine so I am sure you can understand why I haven't posted about it.

The thoughts race through my head like wild fire and when I finally sit down to write either I feel as if what I am feeling is selfish or stupid or I totally forget what I was going to write. Writing things down for later doesn't even work anymore. I am the one that loses the book, paper, pad completely or I just can't even take a second to write it down. Do you remember the egg shells I spoke about? You know the ones that I feel like I am constantly walking on??? I think they have turned into shards of glass. They hurt. It hurts to know that something isn't right and to see him so frustrated and not be able to help him.

I sit up at night wondering how I can help him and what I can do to see him smile more. I miss that smile throughout the day. I hate the screaming, yelling, kicking and I hate that I feel angry at him sometimes. I shouldn't be angry at him. I love him so much but honestly I DO get angry at him. I have caught myself three times this week start to yell at him and take a deep breathe and change my tone. I don't know if these are normal feeling or maybe I am not as good of a mother as everyone seems to think I am. I don't feel strong anymore.

I can't sleep, have NO appetite, and I worry all the time. The other day I went for a walk with Chucky Cheese to the neighbor's house. They have chickens, pigs and a horse that he loves to visit. They had company and introduced us all and told me to have a seat. But.. I couldn't stay sitting, I was constantly watching and guiding. The man said,"You worry too much. Stop being a worry wart!!"

I don't take offence cause I am sure he has no clue what my son is going through but I feel as if I am becoming that over protective mom. I am like that because I am scared. I couldn't bear to lose him. He is my world. Sorry this is a jumbled mess but I just had to write it all down. I needed to let it all out, and cry, feel and release. I needed to be honest and say that I am very angry. It just isn't fair.....

Monday, March 14, 2011

Having Faith With Special Needs

Unknown 3/14/2011 0 Comments

I went out this weekend to do the Shamrock run with my niece. I was not expecting to run. I thought I was going to watch the parade. Until, my children wanted to be in the run. So, what did I do? I ran and walked in the parade about 2.5 miles with my children. Thankfully my sister was able to take Buddy cause he was tuckered out but my lil man Chucky Cheese walked the whole thing. Except for the times he was carried in between, but, he walked the whole time. LOL.. I think the hardest part was in the beginning when they shot the gun off and Chucky started flapping and spinning and Buddy covered his ears and cried. My poor babies. So I cuddled for a minute and picked Buddy up, almost getting trampled but hey, my babies needed me. Then off we went. It was a bit crowded at first but with how slow my kids went we were soon in open space and it was wonderful. Great exercise for them. So, what is the point of all of this?

I guess, I just wanted to allow you to experience my joy and pride in my boys. They overcame a lot of struggles yesterday and did an amazing job. I think sometimes, as parents with children with special needs, we tend to overprotect or avoid certain situations for a fear of their tolerance. I am not exempt because there are times that I will say nope, can't do that cause he can't handle it. Well, frankly I have been wrong and while they may have had moments it was not nearly as bad as I would have thought. I just want to give the knowledge that your child needs your faith to grow. If you never let them experience things for fear of their reaction, not only will you never know how they will react but they will never learn how to react.

I know how tough it can be because there may be times that it does NOT work out as you would like but I do know that it is all a learning experience and in order to learn they have to experience. A good example of this would be my latest visit to the doctor with Chucky Cheese. She was amazed at how far he has come in the last couple years. He went from being a totally disconnected child who was entirely non verbal to a verbal one who visits our world much more often. Yes, we have rough days but he has improved and comparing it to last year I am amazed. He really has made a lot of progress.

To wrap this up I think that we as parents need to give our children the room to grow and explore their world. They need to learn how to maneuver in the world. Make sure that they know you have the confidence in them to achieve whatever they may want to achieve. While they may not reach their goals at least you are supporting them and showing them that you have faith they can achieve them. They will surprise you so keep your minds open.

Thursday, February 24, 2011

What Is Sleep? I Forgot !!!!

Unknown 2/24/2011 0 Comments

About a year ago Chucky Cheese was waking up every night screaming for a drink or something. It was so hard. I wasn't getting proper sleep and that made me a very cranky mommy. The Melatonin did help and he does sleep better then he ever did. I use it in combination with a disco spinning light. The light helps him to self soothe when he wakes up. At least it used to....

Lately sleep has become a luxury. It is no longer something that I may enjoy and I guess I get it according to when he allows me to instead of when I need it. I might actually have to start sleeping during the day just to ensure I can function. Just hook me up to an intravenous line and keep the coffee coming. Then I can survive the torture of sleeplessness.

Last night, as I was cooking dinner, my twelve year old got an itch to try to be helpful. Hmm.. I sure wish she could have felt like helping by cleaning her room, but NO... she was helping to put her brother to bed. Sweet right??? Nope... NOT GOOD AT ALL!!! Charlie usually goes to bed at 7:30 and is asleep by 8 pm. With this schedule he will awake at 6:30 - 7 am every morning. This morning he woke up at 3:15 am and wanted to get in my bed. Not too bad right? WRONG!!! He kicked the hell out of me all night. NO sleep for me!! The night before last he woke up upset because his blanket fell on the floor.

All of this waking mommy up stuff has got to stop!!! I need sleep!! Then when he goes to school I can't sleep because I am already out of bed and have had to be outside in the cold air. So, I have a headache and am a little cranky. On the bright side, he was telling me that he has magic today!! I am so excited. He is improving and making strides. I guess I just have to keep that in thought. Progress!!!!!

Tuesday, February 22, 2011

Mornings

Unknown 2/22/2011 0 Comments

Mornings can be really tough. There are days that Chucky is easy to get ready for school and then there are the days he is not cooperating. Days in which he won't take a shower or get dressed. How do I deal with these mornings? I am actually curious how you deal with rough mornings. I think it is a method of survival for us moms. I have had to accept the fact that my coffee is usually going to be cold before I finish the cup and I should probably put pants on under my robe so that I can run to the bus without forever tainting the poor children's minds with my legs.

I must admit that the television is a wonderful help in the mornings. He has a set morning routine and it includes some TV time. Chucky never used to watch TV and I loved that, but I can say that it does help to motivate him. I allow the TV on when he first wakes and he can watch it for about 15 min before I have to start getting him ready. Then it is time to shower and we have to struggle with all of the sensory overload induced during this task. There are days he loves the shower and there are days even the sound of the shower is overwhelming for him. I remember when he refused to shower because he referred to it as mosquitoes biting him. Now he just tells me it is too loud. If anyone figures out how to turn the volume of the shower down, please let me in on that!

After he takes a shower we have to deal with the cold feeling he gets when he steps out of the shower. We won't even discuss the meltdown that occurs when the rug on the floor gets wet. He then refuses to get dressed because he is cold. Umm... last I knew, putting clothes on when you are cold, makes you warm. So, he runs into the living room where I chase him down and dry him off. Then we fight to get him dressed. At times he will put his underwear and shirt on. Pants are still a little tough for him but he has done it on his own on occasion. It is a major improvement to where we were last year.

After getting dressed we make breakfast which goes really smooth, once he decides what he wants to eat. The little booger will eat the same thing for a week and expect that food until one day he doesn't want to touch it anymore. Then I have to figure out what he wants to eat. LOL.... This is where it gets tricky because unfortunately I did not get ESP when I had him and therefore I cannot read his mind. Sometimes it is easy and then there are times it is trying. So he finally eats and we wait for the bus. Whew... what a busy morning. How do yours go? What makes it easier or harder?

Monday, January 31, 2011

Seeing The Whole Picture

Unknown 1/31/2011 0 Comments

Somethings come with time and they seem as if they will never happen. Our children seem to accomplish things on an entirely different timeline then most. I do believe though that it will happen when they are ready. This goes for everything and then when they do happen they are not overlooked. AT ALL!!! We see these "small" accomplishments and rejoice to see progress.

My son potty trained amazingly by age three. I hear that is a big deal with all of his challenges. I was thrilled that I had been able to teach him such a trying task. It wasn't entirely easy, but I guess I had the upper hand. He did not like and could not handle diapers. The feel of them on his skin really bothered him. He hated being wet and well, poop was horrible for him. I guess that explains why he was poop trained before pee. Isn't that the opposite? Point is together we accomplished it and it was a celebration. We did this before he was verbal!! That shows me a glimpse of his determination.

The only thing he has had trouble with was wiping and he would just scream until I went in to help him. Today he said he had to go poop. I knew I had to follow him in there in a minute and so I did. I was ecstatic to see that my son was wiping himself on his own. It was the first time ever!!! I am so proud of him and it was just the boost I needed. We have been having a really tough week and this was a spectacular beginning to a wonderful week.

I am sure that we will have many hurdles to jump over and times of frustration, but these so called small moments make it a lot easier. When I think back 3 years ago, I had a little boy who couldn't speak at all. He still had a smile that could light up a whole country. Three years ago, my days were filled with physical aggression and screaming non stop. Two years ago, I still had a non verbal son who barely looked at me. One year ago, I had a son that was hardly understood and I hadn't slept in 3 years.

Thinking about that has made me realize that we have made progress. I went from a son that couldn't walk, talk, or have any eye contact. He didn't know his numbers or colors, and the therapists thought he had hearing loss. He was a very angry toddler and bit constantly. I was always on egg shells and he had no fear and felt no pain. Today, he knows how to count to five and he knows most of his colors. He speaks well, walks and looks at me every now and then. I am happy to be his mom and I think that he is happy I am his mom.

So for today I leave you with the thoughts that every small accomplishment snowballs into something wonderful. It is something that we can't see in a week, month and possibly year. We have to look back and reflect on where you were and where you are know. Together you will accomplish great things. Sometimes it takes patience, understanding, determination, and encouragement but it can be done. Look beyond what you see everyday, I guarantee you will see growth in your child as well as yourself.

Sunday, January 30, 2011

Emergency Meltdown Kit

Unknown 1/30/2011 0 Comments

My son is having serious meltdowns. It is so hard to just sit there through them seeing him so upset. This all gets harder when he is flailing his arms and screaming in my face. I start losing my patience and feeling overwhelmed. Anyone else feel like this? I think I have the solution. It may differ for different children but hey, it is a thought.

I think I am going to make a kit just for meltdowns.This kit will include some damage control, first aid, armor for me, and calming things for him. It just might work. You might ask how I came up with this idea and so I am going to tell you. Chucky had another meltdown today. It was really bad although I didn't get slapped today just kicked a little. Then I took a deep breathe and sat back. Every so often in a calm voice I said,"When you calm down we can talk" Eventualy after a lot of screaming and kicking, he calmed long enough for me to suggest an alternative calming tool. This worked wonders. Now I will share with you exactly what my son found so calming along with the other items I wish to include in my kit.

Bullion Cubes- It doesn't matter what flavor, they are pretty much harmless. But, if your child like to build they are amazing. I don't cook with them but instead I buy them for my son's fine motor development. He can stack them, unwrap them, build with them.. ect. They work wonders and when I really need him to take a breather I know I can rely on the trusty bullion cubes.
Comfy Stuffed Animal or Pillow- My son finds it soothing to have a comfy when he is upset so this might be something good to keep in the kit.
Mouth Guard- to protect my teeth from those terrible blows to the mouth.
Drum Set- This worked wonders. It was a perfect defuser. He got to hit something but not a person and he loved the reaction sounds.
A Padded Suit - This is to protect my skin from all the bruises that I am constantly getting.
Bandaids - Just in case we need one
Ice- most times after a serious melt one of us needs this
Music - to calm him

My son said this was his sister Chipmunk and him jumping on a trampoline.
The pile to the side is dirt he says. This is one of his creations after a meltdown.

I think this completes my list of items I shall include in my emergency kit. I am not so sure how to fit a drum set in a kit but I am welcome to any suggestions. Do you think an Emergency Kit would help you? What would you put in yours?

Meltdown Disruptions

Unknown 1/30/2011 0 Comments

Image by ibtrav via Flickr Well, it has been a really rough week.. wait I meant month but I think today was the worst day all month. Chipmunk isn't feeling well, her belly hurt all day. I made her a warm bath and told her to relax for a little while and see if she felt any better.

I was talking to her for a little while when Chucky,started screaming my name. Which seems to have never ended since he woke up. I tried to ask him what he wanted he just kept screaming Jocelyn. So, I let him go into the bathroom but told him he had to stand near the door because his sister needed privacy. I figured this way he could speak to her and get what he needed. That didn't happen. This led to a screaming child in the bathroom with sick daughter in the tub. Did I mention that the bathroom echoes so we hear this rant twice. Boy am I lucky.

I asked him what he needed and got screamed at some more. Being as there was no consoling him, and he was winding up and flailing I decided to remove him from the bathroom. Did I mention there was a sick child in the tub? Well, removing him was not an easy task. AT ALL!!! He grabbed onto the door, shoved it closed almost catching my fingers and was kicking me. I really couldn't calm him down and he over powering me. It is at times like this that I feel completely helpless. I was overwhelmed and exhausted. We were only 10 minutes into this meltdown. I asked my daughter to ask a friend to help. I only got him to the hallway, which isn't that far, and he threw himself down on the floor. Then it got really bad. I know how much worse can it get? Trust me a lot!!

He continued to scream and I sat on the floor trying to calm him. BAD idea. Actually I should have stayed as far away from him as I could. As I sat down I saw an angry ranting child and I think his eyes were red at the time, shoving the back of his head into my mouth. I bit my damn lip. Ouch!! Oh, let me remind you again, There is a sick child in the tub!!! Unfortunately I was not with her and she is staying there. Hey, think about it... at least if she pukes, which we all know I can't handle, it's an easy clean up!! After all the head butts, I decided to ask him how he was feeling. Some ~~crazy~~ person actually suggested trying to get your child to recognize their feelings when they are in this state. It is supposed to help them calm down. Ummm.... word of advice...IT DIDN'T WORK!!

This made him worse. He slapped him in the face 4 times and was kicking the shit out of me. I was stumped. Anytime I spoke to him it got worse but after hit three, I grabbed his arms. Then I said hitting is not ok. Charlie is feeling very angry. He was possessed, really. Have you ever seen The Exorcism of Emily Rose? That was what my son looked like. Just to clarify, he is a sweet boy and I love him so much, but he was seriously off the wall!! I could not calm him. I tried showing him what he could do when he was angry. Then as I sat helplessly in the hallway with my ~~possesed~~ son, I thought about what I could do to reach him. It was at that moment that I noticed a metal popcorn tin. Hmm... Drumming, hitting.... this might work. My friend is a musician so, he started drumming on the tin and singing a bit as well. My son was still screaming but after a minute he seemed to calm. It was enough to talk to him. Wow, there is an end to this!

He calmed enough during the drumming that we could take him into our roommates room where there was a full drumset. He was in there for almost an hour drumming away. It really did calm him. I asked him what he needed from his sister and he told me!! He just couldn't verbalize his needs at the time. He was frustrated. He needed an outlet!! So, I guess we should all own a drum set?? I can't afford one but, it worked this time. That was not the end, it did happen again later on in the day actually, my whole day was filled with meltdowns. The final one, I just gave in. He wanted his sister and he was worried about her. I think this was part of his anxiety and he didn't know how to cope with it.

Monday, January 17, 2011

Sleepless Nights in Cottekill

Unknown 1/17/2011 0 Comments

Now I know that when you have a baby you expect to have sleep deprived nights but I didn't think they would last almost 4 years. Give me a break!! My son was waking all night and he was not wanting to play either. In fact he didn't want to be touched, flailed his arms and legs and screamed at the top of his lungs. He banged his head, punched anyone within range and bit. He was a demon child!!!! Not really but man it was way more than I ever dealt with.

Finally after three and a half years of complete hell and many bruises later my boyfriend grabbed the video camera and started recording the extreme difficulties I was encountering with my son. This opened the doors for my online video diary that I started for my son in hopes to find support and answers. I got great feedback from fellow parents and even professionals that expressed genuine and deep concern for the situation. With that I also received comments that were hurtful and ignorant but I was bound and determined to help my son. If this was the path I had to walk down then so be it.

After recording a three night torture session, I brought the video to the doctor's office. The doctor watched it and immediately attempted to put my son on medication and told me it was a temper tantrum. This was not the case. My son would wake up in complete rage. The fact is that my son was having Night Terrors, which is common for most toddlers but destined to last longer with children on the spectrum. Chucky was not producing the Melatonin in his system and therefore was not getting restful sleep. I left the office in complete shock and disgust at how quickly they were to medicate the child rather than troubleshoot what was going on.

I spoke to more parents and even saw another doctor. This doctor stated that I should try Melatonin and to start off at a low dosage. We tried 1.5 mg but that didn't do anything for him then we upped it to 2.5 mg which helped him sleep but he was still awaking three to four times a night in distress. The doctor said 5 mg every night at 7:30 for a month and a half. For most children this would reset their system and then they don't need it. We did this religiously and I must admit that I was scared to stop it for fear of the torture sessions to return. Regardless of my fears I did not want my son to rely on anything to acquire sleep and so I stopped the Melatonin. I must confess that it didn't last long. I kept him off of it for three days and it was horrible. The doctor and I agreed that it was best to maintain the Melatonin continuously.

He was finally sleeping better. He also showed behavioral changes during the day. Now, don't blow this out of proportion, he was far from an angel. But, he had less melt downs and seemed cheerier. It was nice to see him smile. I am not sure if the Night terrors were because of lack of sleep or if it was because of dental issues that I was unaware of, but when I stopped it he was having sleep issues again so either way it helps him.

He complained that his tooth hurt and I scheduled a dental appointment immediately. We saw three dentists that refuse to see him again and he was referred out to a specialist in Catskill. It is a far drive but the Greene Pediatric Dentistry, is amazing with him. He had a lot of dental issues. Six teeth got pulled and two of them were capped. It must sound like I am a horrible mom, but he doesn't eat a lot of candy and hasn't drank out of a bottle since he was a year old. The problem was that like many children with SPD,Sensory Processing Disorder, he could not tolerate the taste of the toothpaste or the feeling of the toothbrush. Brushing teeth always led to a major meltdown. These ended in me almost losing a finger and that was if I was lucky cause he might just take my whole hand off. LOL..

I found a wonderful toothpaste,Natural Toothpaste - Kids Orange Wow with Fluoride that works for him and after all that dental work I think he is more attentive. I am not saying he likes it but he wants to keep his teeth. While he still requires a lot of strength and patience to brush his teeth, most of the time he really tries to do it himself.

Well, boy this this post get totally off track. Umm... what were we talking about? Oh, I remember, Sleep or lack of!!! The reason for my sharing all of this with you is because I am not sure what has been up lately but he has not been sleeping. The other night I wanted to sit down and write and I have been so tired. I just wasn't able to do it. At first he was waking and coming downstairs to climb in my bed, which is better then when he was on his 3 am wake up call kick. He would awake at 3 am, I think he thought it was morning time, demanding chocolate milk with honey in it warmed up. He would drink it and then I would explain that it was still night time. If I was lucky he would go back to sleep. If not, well, it was a very long day.

Anyways, he started waking up in the middle of the night and climbing into my bed. No big deal right? About three nights later he was stirring and crying intermittently. I went in and checked on him but when I spoke he flipped out. It was a flash of the past. He was flailing and screaming. There was no consoling. I wanted to hold him but he wouldn't let me touch him and the doctor said to put him in a safe spot and not to touch him. I did that and it was horrible to see him in this state again. I think it is so hard to see your child so upset and not be able to console them. My daughter approached with caution and sat on the side of the bed. Chipmunk is amazing with Chucky and can usually calm him very quickly.

This didn't work either and he swung his arms at her face and hit her. He didn't hit her hard but it really hurt her feelings. She ran off crying and while I wanted to console her I needed to ensure that Chucky remained in a safe situation. She calmed down and I grabbed the iPad. I never figured out what was wrong but he put on some classical music and calmed himself. This is a first!!! About five minutes later he started crying that he had to go potty. Was all of that because he needed to go potty??? I am not sure but he still wouldn't let me touch him and when I did, to help him get his pants down, he cringed and moved away from my touch. Not only did he cringe but he screamed as if my touch was hurting him. My eyes were burning as I was fighting back the tears that wanted to stream down my face. I cant describe my feelings that night as they were so mixed and conflicted.

I was angry at Autism for attacking my son. I was hurt that he wouldn't let me console him. I was happy that he found a way to calm himself and I was feeling uncertain about how I could continue handling him while not neglecting my daughter's need for comfort. Finally I was scared. I am not sure why fear arrived but I think it is because of the uncertainty of what is wrong and the fear of the unknown or how much damage he will do.

Since this incident he has been sleeping well again. The only other incident was actually kind of funny yet scary at the same time. I woke up and the back door was open. Ok, Did your heart drop to your feet yet? Mine did. It was freezing in the house which means that it was open for a while. I checked for all my children and they were in their beds. Whew!! So, why was the door open?? When I went to get Chucky up for school, he had no undies on. I asked him why not and he said,"Me go Pee in snow when you sleep!!" OMG... this is funny as he went outside to pee but scary cause it was like 2 degrees outside and he could have wandered farther. Time to barricade the doors!!

Thanks for listening to my rant and I hope I didn't stray too far off topic. LOL... It has been a long week!!

Thursday, January 13, 2011

Hamster Ball

Unknown 1/13/2011 0 Comments

LOST IN THE BALL

I'm in a cage ball, I can't seem to break
It rolls around the path that I take
But yet it doesn't break, not even a scrape
I just need to escape
I cannot change things
From inside here, I cannot say
The things that I feel
All I can do is look and weep
At life go by and I am meek
The holes I my ball
Release to me the stifling air
That won't let me breathe
But yet I cannot get free
It just won't break
Crying will not make it change
I must fight back, I must release
The pain, the anger, and the hurt
Those feelings that I hold deep inside
To cover all the other's eyes
Of how I feel deep down inside
Then maybe I will be free
Free to speak and act and feel
Free of the caged ball that I call me

I wrote this poem and reading it now makes me think about our special needs children. They go through life struggling in ways most of us don't. They have trouble understanding emotions and feelings. Some have no words at all and I cannot imagine not being able to vocalize the thoughts that are swarming in my mind. This brings to light, for me, what many of our children must cope with. They must cope with the inability at times to express their wants and needs. In my son's case he has trouble expressing when he is hurt and where he hurts. There are times he has boo boos and cannot even tell me what happened. It is frustrating for me as his mom so I can only imagine how he must feel.

As Apples And Autobots tried so hard to relay in her most recent post, Apraxia, it is heartbreaking to witness and hard to cope with. I hope that maybe someone can relate. I compare it to a hamster in a ball, rolling around in circles bumping against the walls with no certain destination. This is how I as a mother of a child with Autism feel many times. Actually I think this is how most mothers who have to deal with the schools and doctors and in many cases family when it comes to advocating and explaining their child. How do you think our children must feel as they grope around for words that seem out of reach?

When you see a child that seems to be acting out or bratty, please try to consider why he might be doing this. In some cases it is as simple as lost words that seem so close to grab but yet their arms cannot reach them. Have you ever been sitting down and tried to stand up but your leg is completely numb and you can't walk? Imagine that being your tongue, making it impossible to communicate what you need. Have you ever needed a drink of water but you have a cold and lost your voice? It is frustrating right? This is how my son and many other children live every day.

Have compassion, think before you speak, but most of all don't pity them. I admire them, they go through life with so many challenges and so much prejudice as this is an invisible disorder, but they make it and every day even if it only be for 5 minutes I see a smile and happiness. They don't wallow in self pity and they don't want your pity either. All they want is acceptance for who they are and encouragement for who they can be and all they can, and will accomplish.

Wednesday, January 5, 2011

So Yelling is Out…umm..What can I do?

Unknown 1/05/2011 1 Comments

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?

Saturday, January 1, 2011

2010 Recap

Unknown 1/01/2011

I haven't done my recap for the year and have hardly met a year as a blogger but I think I can recap my year for you and it would also serve as a nice insight to my life.

January 2010-
Much needed daughter time

My son was diagnosed.....

February 2010-
I celebrated my Dad's Birthday.

Pumpkin and Chucky Cheese got their hair dyed

March 2010-
Chucky Cheese turned 4!!!

My daughter sang in All County!!

April 2010

We attended our 1st Autism Walk where we met Nancy King whom is Chuck Cheese's Equine Therapist!!!

It rained the whole day but the kids still had fun.

Buddy

Chucky Cheese

Chipmunk

Easter was warm... Kids had a blast and we made a tire swing!!

May 2010

We celebrated my nephew's birthday and I turned a year older!

Chucky Cheese started Equine Therapy

June 2010

Chipmunk's class went strawberry picking

They also did a read a long of Madeline!!!

Chucky Cheese learns how to swim!!!

July 2010

I tried to help Buddy in the ball cage at a friends birthday party.

We also had a trip to Splash down with my older three. It gave them some mommy time and I think it would have been really hard for Chucky Cheese.

August 2010

I rescued a baby robin and nursed it for three days but it died. :(

Chipmunk and Buddy turned 7 and 6!!!!!!!

September 2010

It was all about expression!!

This is them on the 1st day of school

This is the end of September

October 2010 -

Chucky Cheese got a ribbon at horse therapy and started playing with a little boy who is also ASD!!!

Pumpkin drove the tractor solo and got her hunting licence !!!!!

Skin picking was happening a lot...... It got better towards the end of the year.

Halloween the boys were Mario and Luigi

The girls were a goth chic and a genie

Chucky Cheese jumped four feet head first from a playground boat and fractured his nose. He couldn't tell me it hurt, just had odd melt downs.

November 2010
Sleep issues again........

Chucky Cheese is brushing his teeth more.... this has always been hard cause of sensory stuff.

Krystal turned 12... She is getting so big... We had a very memorable birthday bash for her which included a photo shoot with a friend.

My Wife and I with all our kids... LOL...

December 2010

Christmas pictures

Jocelyn keeps losing teeth

Charles needed stitches but we glued instead!!!!

What an end to the year, Jacob was having seizure like behaviors so we had to go for an EEG

He fell asleep

Well, that is my year in pics and videos. It could have been much longer cause it was a very active year and as many parents can agree there are a lot of milestones. I encourage you to check out Charlie's facebook diary to recap some of his milestones throughout the year at Charles Alexander. You may have to friend request him. Hope you enjoyed this. Happy New Years.

This year I am going to try to focus more on the small things instead of focusing on all the things that seem so overwhelming. I want to enjoy my children as they are while they are young.

Autism As A Whole

Thursday, July 19, 2012

Releasing the Anger and Hurt

Monday, March 14, 2011

Having Faith With Special Needs

Thursday, February 24, 2011

What Is Sleep? I Forgot !!!!

Tuesday, February 22, 2011

Mornings

Monday, January 31, 2011

Seeing The Whole Picture

Sunday, January 30, 2011

Emergency Meltdown Kit

Meltdown Disruptions

Monday, January 17, 2011

Sleepless Nights in Cottekill

Thursday, January 13, 2011

Hamster Ball

Wednesday, January 5, 2011

So Yelling is Out…umm..What can I do?

Saturday, January 1, 2011

2010 Recap

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Thursday, July 19, 2012

Monday, March 14, 2011

Thursday, February 24, 2011

Tuesday, February 22, 2011

Monday, January 31, 2011

Sunday, January 30, 2011

Monday, January 17, 2011

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Thursday, January 13, 2011

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Wednesday, January 5, 2011

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Saturday, January 1, 2011

About Me

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