November 5, 2010

11/06/2010 Charlene Long 0 Comments

A clickable map of Australia's states and main...Image via WikipediaToday started as as any other, hustling to get the kids ready to catch their bus, preventing melt downs with Charlie, helping him get dressed and ensuring that my twelve year old is wearing clean clothes and brushed her hair. I don't know if this is just a typical phase but I thought girls were very aware of hygiene.  I guess I thought wrong. LOL.... My afternoon was calm being there was no one here, but all the craziness returned as my son and daughter came home. I decided since I was in a lazy mood that I was going to wait for them to come home and then go shopping. What was I thinking? We went to the first store and Charlie had to pick up some items for his pen pal in Australia. I know that might seem odd being he can't write but his mom and I have been doing online diary's of autistic children and the children seem to really enjoy the interaction. My son has even made up songs about his friend Jake. He picked out some really nice things and it was really uneventful until.... I heard my son shrieking at the top of his lungs. Can you imagine? This was a small store and as I approached my son from behind there were other people gawking at Charlie and I. What was the issue? He didn't see me and freaked out. I calmed him actually pretty quick and we were looking for a present for Krystal's birthday when he saw something he wanted. You would assume it would be a toy of some form and I guess it was, for a dog!!! He found a "Comfy" unstuffed fox with squeakies that he doesn't like in it's head and tail. The thing cost ten dollars and I have no idea why I bought it. But he loves it. Then came the real feat of my evening, we had to pick up Jocelyn and Jacob, then food shopping. This was seriously a backwards day. Everything I procrastinated to do all day now had to be done with four children and an overwhelmed mother.
Off to the grocery store which I must say was the worst decision all evening. I now had four overexcited children with one of them having severe sensory overload. Throughout the shopping trip though I must say that I only acquired and 500 weird looks because my youngest decided it was necessary to lick the doors of the Pepsi dispenser while my six year old was climbing on the hood of the nice car themed grocery carts. We did survive the shopping trip although I probably resembled someone whom had just stuck their finger into an outlet cause my children really ran me crazy. The cashier just looked at me and said,"Do you need someone to help you to your car?" I replied, "I need a lot of help but I don't think it is in your job description." She said this all normal and it will get better. If she only knew the whole story. As we were loading the cart my son decided he was needing to crawl underneath the benches, I thought at least I know where he is. Suddenly he bolted for the door, I bolted too and picked him up kicking me the whole time and grabbed the cart and my children and left the store. I guess it could have been worse. I mean I have had worse shopping trips and those only included the twelve and four year old. We made it home and had pizza for dinner, mind you I don't do red sauce, and in all the chaos I accidently put my pizza back. So I made dinner for them popped a movie on and let them all slumber on the floor. Boy, you ever notice how innocent and angelic they look when they are sleeping?  After such a hectic day Mommy was ready for sleep to, but first I had to take some pictures.

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Transitioning to Kindergarten

11/05/2010 Charlene Long 1 Comments

Yesterday I went to the elementary school that my son might be attending. I wanted to see the classrooms to get a feel of what type of program they ran. I am really nervous about him slipping through the holes and not receiving the services he needs in order to succeed. I was met with what I perceived as a brick wall at the school. They told me that we had to schedule an appointment (which I was fine with), but it had to be approved of by the school board. What is that all about? I immediately put my guard up. I am sure that most special needs parents have heard of the horrific happenings in school with our children and while it doesn't seem to happen to your child it very well could.

This has always been a concern of mine since my son has a lot of difficulty expressing his needs and often need to be questioned specifically to find out about his day. Therefore if something bad happened at school, I may not find out about it. That concerns me which is why I am implementing the PEC cards and a communication board. At least I know he would have the ability to let me know what he needs as well as if he was injured. That should resolve that issue and so now onto the next one. How do I know that they are going to place him in the proper setting?

Well, the Special Education director called me this morning about my request for a tour. She wanted to ensure that I knew she was also concerned about my son's placement and that they have a very vigorous process for placing children. I will go through this with you as I feel it is a wonderful way of finding the best placement. First off I must state that no one can ensure that the placement of your child is absolutely going to work and there will always be some tweaking to the program. With this in mind, they can do their best to place them in the environment that the team(which includes you), feel is best.

Our school district meets with the Kindergarten teacher in mid January. At this time they arrange for the teacher to go to the Pre-Ks so they can observe the students and report on whether they would be good for their class. Then the parents get to go to the school and observe the classes that best suit their child. In March  there is a Pre-CPSE meeting where everyone discusses the goals and opinions on services and applicable class placement. All opinions are then heard and discussed and a placement is agreed tentatively until the May meeting. Any concerns in between are easy to deal with as they will call another meeting and discuss so that all of the team is together as a team when it comes to the final decision.

The conversation I had today was wonderful. They were prompt on returning my call and they were very clear on the way the process works. She also was very knowledgeable of my son and seemed to really care about his improvement. She also suggested ways to help him at home as well and assured me that while I may feel crazy, I really am on the right track. I think for any parent, it is vital to have open communication with your child's team. It is most successful when you can all work together for the same outcome. I learned a lot in the last four years but I also realized a lot about myself in the last two days.

While I have been advocating for my son diligently. I think I convinced myself that he would start school and everything would just get better. Let me explain, He is four with the functions of a two and a half year old. I had myself so convinced(I think for my own sanity), that he would be at age level and functioning as a typical child once he became school age. I have to stop that thought process as I am expecting way more from the school then my son can perform. They are not miracle workers, they are teachers. If my son is having trouble processing then they can't fix that. But it is an elimination process to find the way to engage him in our world.

It is all a process. Sometimes tiring and exhausting, sometimes making me want to crawl in a hole, but all it takes is that one small thing,(openly giving me a hug, jumping with 2 feet off the ground), that most parents overlook cause they are so common that makes me realize that this is all worth it. He is worth it and I am blessed to have my wonderful children.


November 4, 2010 - Alien Abduction??

11/04/2010 Charlene Long 0 Comments

Today started out as a little hectic. Charlie was NOT motivated and I can't say I blame him as who is motivated at 7 am? He didn't want to get dressed and so I had to try and dress a child that was ever so resistant. After he got dressed he watched his morning show and ate breakfast.  We missed the bus and today I am really not sure how so I drove him to school and dropped him off. Then I tried to visit the school he might be going to in the Fall but they have to schedule an appointment for a tour. I am nervous about next year and it is extremely important for him to be placed in the right school in order for him to obtain the proper teaching so he can learn. This is such a struggle and it rubs off on every other aspect of my life. Being under the stress has made me exhausted and he has been really over stimulated. It has also been so hard on my daughter and I am not even sure that she knows that I understand. I do understand, sometimes I just can't relate as I am so adjusted to it. Well, I have to share the rest of my day because I really think my son was abducted by aliens!! Seriously, I sent him to school and he was having a rough time but when he came home, he was a completely different child. One very small melt and then he was fine. He went shopping with Krystal and I which was a little rough but that was typical. Helped me through the register and Krystal did all the bagging. She is such a sweetheart. I can't believe that in four days she will be 12 years old. Wow... feels like just yesterday!! He got this slimy stuff that makes weird noises and it occupied him all night. I am pretty certain that the aliens will return my son soon, probably tomorrow, but I have to thank them for giving me some time to re-energize and gain the strength to endure it all again  for another unknown period of time until they come and take him again. LOL


November 3, 2010 - Sensory Input

11/04/2010 Charlene Long 2 Comments

Today started out really rough but evened out as the day went along. I was able to handle Charlie's meltdowns before they got to the out of control behavior and my daughter Krystal was very helpful yet backed down when I guided her too. It is tough to tell her she can not wrestle with her brother but due to his aggression all wrestling is off the table. So, we are trying deep pressure and heavy physical activity. When it was warmer outside, I noticed that when I had him do a lot of physical activity including lifting and pushing, he seemed to have less meltdowns. Hey, I think I just hit the nail on the head!! But, what do I do in the winter and when it is raining? I guess it is one more thing I have to figure out. Krystal procrastinated on doing her homework and ended up completing it really late but I guess that was her choice as she didn't get her TV time because she had to do her homework. Today is one of those days that when I reflect back on it I can say Wow, it was a pretty good day. Now, I warn you, if a typical parent of a typical kid walked into my home they would not be thinking this but I am not a typical mom of typical kids. I am a mom of four children all thriving for my attention and one of them requiring  a whole lot more then the others. It is a juggling act in itself and someday I will learn how to balance it all.


November 2, 2010

11/03/2010 Charlene Long 4 Comments

Today was a busy and exhausting day. Typically I spend my days with about 4 hours filled with screaming, crying or tantrums. Today we hit an all time high of about 7 hours of insanity. When you have a special needs child, of any disability, it puts a strain on all the people in the household. The other's involved most often feel as if they never have your attention or time. This can be heartbreaking and also trying. You see I have tried to give my oldest daughter some individualized time and while she loves it when it is occurring, the novelty dies quickly. What I mean is that even after spending an hour with Krystal on her skateboard she still felt compelled to interrupt when Charles needed some sensory input. This made the situation 10 times worse as then not only was he upset but he started getting physical with Krystal. While I know that I need to be stern and have consequences for his behavior I also know that she tends to egg him on and tease. If she sees he is getting upset with what she is doing rather then try to prevent it from escalating she continues. I know what you are thinking, She just twelve and maybe she doesn't understand. But, she does and we do talk and I allow her to be helpful although there are times when he needs his space. I feel that she should respect that. I guess I probably sound like a completely frazzled mom who doesn't know how to parent and trust me I do feel that way sometimes. But, as much as she is learning so am I. I guess I just have to admit that I am only human and I do seem to be less patient at times with her than I am my youngest. Beyond that situation my son decided that he didn't want to leave the house. I had set the timer gave him a warning about us leaving, tried to help him get prepared and to no avail he was not thrilled about it or ready. He was kicking crying and spitting on the floor. The spitting is a new behavior and I told him it was totally unacceptable. I cleaned up his mess, coaxed him to pick a few toys to bring and scampered out the door. The rest of the evening was pretty smooth aside from him running towards the lights(traffic lights that is!!!). What a scare. Well, bedtime went smooth so smooth in fact that I fell asleep with Charles at around 8 pm. 


My Family Introduction

11/01/2010 Charlene Long 6 Comments

I guess I should start with a little introduction into my family. I am a single mom of four beautiful children. I am 31 years old and enjoy photographing. As a child I led a challenging life and thrive to prevent my children from ever having to endure that.

My oldest is Princess, who is going to be twelve on the 7th of November. She loves to sing and has an amazing voice. She is a tomboy and loves hunting and skateboarding. As she was an only child for five years, she finds it difficult dealing with her siblings at times. She is very scattered in her thoughts but is an amazing young lady. Princess had a lot of medical problems when she was young but it has all cleared up now. She had GERD and Bilateral Syndactly. GERD is a gastro-intestinal problem and the Bilateral Syndactly is a birth defect in which the last two fingers of both hands were joined. They were separated at 8 months and again at a year and a half. About two years ago she underwent another surgery on her hands to attempt to straighten the fingers to improve function, unfortunately it was unsuccessful. The latest surgery was for her tonsils and adenoids. She also struggles with borderline ADD. Regardless, she is a beautiful young lady.

My second child was born in August 2003. She is extremely bright and thoughtful. I have thought about having her tested for gifted as she does have a lot of the characteristics of a gifted child. She met all her milestones early and knew how to write her name, recognize her letters and numbers and drew pictures with immaculate detail before Kindergarten. She is sensitive and bubbly. I call her my Chipmunk because she never grew out of her chipmunk cheeks. She also loves to sing and is reading at a Fourth grade level. She is mathematically and artistically gifted but has not been tested yet.

My third child was born in August 2004. We call him Buddy and he is Chipmunk's Irish twin. He was born on the same day, a year later. He had speech delays along with a lot of sensory problems. I might add that similar to his oldest sister he also had the issues with his fingers although his was actually one bone and not just joined skin. His was separated at 8 months and again at 1 year. This was done twice for him because as I called him"My Little Houdini", at 8 months old continually pulled the casts off his hands with his feet which caused them to web during healing. Buddy received early intervention until the age of three and currently receives Occupational therapy in school for his hands. He remains a very demanding child with a lot of sensitivities to sounds and touch. He has ADHD and is being evaluated for ASD.

My last child, was born in March of 2006. I may refer to him as either Chucky or Chucky Cheese depending on the circumstances and his mood. LOL He was named after my father whom he never met. He is an amazing young man but very challenging. He has High Functioning Autism, Sensory Processing Disorder, Hypotonia, and an anxiety disorder. While he can now speak, is potty trained and able to do simple one step tasks he struggles to get through each day. Therefore my other children also struggle too. Chucky Cheese was born 3 weeks early at a healthy 7 lb. 12.9oz. He failed to meet any milestones on time. He couldn't  hold his head up, rarely smiled at you, and didn't coo. The only vocalization out of my son was screaming. He was most content sitting in his swing rocking side to side. Early intervention started when he was 8 months old. He remains in a special needs school and is functioning at a two and a half year level. He has taught me a lot in his four years. Patience must be the first and well, unconditional love is right on top too.  

It takes a lot to maintain a household and keep harmony and I have realized that Autism, ADHD, is not only a feat for the parents but also the siblings involved. Unfortunately in the mess of things there is always the child that feels he/she is not getting attention. In my case that falls on my girls cause they do not demand my time as much and they can function. I want to make this better but I really am not sure how. Most of all what a lot of people forget is that it is most difficult for the child who has it.

I hope this blog gives the whole story into a household with Special Needs children. It isn't just about the child with the disability but also the others that live with it and deal with it each day.
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