Autism As A Whole

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!!!!!

Throughout the past few days I have felt anger, pain, hurt, denial and helplessness. I do not understand why I am feeling the way I have felt and I don't like it. I do not want to feel any more. I just want to be numb. Pass me some tranquilizers. Just kidding, about the tranquilizers but please give me a break. As I stated before Buddy is going to be evaluated and has been diagnosed with Tourette's Syndrome. It isn't the end of the world so why do I feel so crushed. Devastated beyond belief. I don't want him to have these struggles.

I am angry that this is happening and I don't want to accept it. I want him to have it easier and I want to be able to help him. I hate feeling helpless and unable to ease his worries. It is heartbreaking to hear him telling me to stop his head and get rid of the tic. I can't and if I could I really would. I feel like I am locked behind a glass wall forced to watch him struggle with no way of helping him. This is torture. I have to admit it must be one of the hardest things to cope with and I am not doing a good job at it.

I have felt so many conflicting emotions and some that I am not even sure how to describe. I guess it all boils down to the fact that it isn't fair. It isn't fair both my boys have to struggle and it isn't fair that I do not know the answers. I hate wading in dark waters unable to see what is lurking underneath. I do not want to make a mistake. I want to make the right choices. Why can't the answers just appear in front of me. I know I sound ridiculous but I am so done with all of the struggles.

Whew, glad to get that off my chest.....

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?

Chucky was three before I had any clue as to what was going on with him. I went three years thinking this child didn't like me at all. It was a hard three years so I think when I received a diagnosis I was relieved. There was a reason why he was not attentive to me. It gave me closure and moving forward was so much easier. I instantly found myself researching and looking for methods to help him grow. I never thought about curing him just understanding him. I found myself content with him and happy he was who he was.

The last week has been a long and tiring one. There has been so much going on and I am now feeling worn down. Anyone else go through that? Do you remember all the issues Buddy was having in school? I have not been able to forget as I have to be the janitor in most serious problems.

I am a little embarrassed to admit that while I cook a lot I usually do not broil. Last night however, I decided I was going to broil a steak. My boyfriend would have stuck the steak on a cookie sheet which would ruin the cookie sheet, but I have to say it was so much better than what I did. *cringe*

 Hey, I was never taught how to cook. I just improvise and make it work. No serious catastrophes yet. Nothing like If This Is Motherhood has done. I am invincible, or so I thought. I think the worst thing I ever did was when I was attempting to make lasagna. I didn't think about the possibility that the pan would overflow and my oven caught on fire. So, I ,being my genius self, got the fire extinguisher and spayed my wonderful lasagna and the inside of my oven. It was tough to clean up and two trays of lasagna were destroyed but I didn't burn them.

He had brought home a delicious looking steak and I put it in a glass cassarole dish on the top rack of the oven. That is what you are supposed to do right? All was going well and then I got distracted. I realized and rushed to the oven thinking I must have burned the steak. He came out and said the steak looks great and we bent down to take a look. He then proceeded to flip the steak and that is when it all went wrong.

He lifted the steak up with a fork and the whole dish burst into pieces. There was flying pieces of glass throughout the whole kitchen. It was all over the bottom of my oven and covered the floor. With this new found knowledge I stress you, DO NOT BROIL IN A GLASS PAN. It was not a pretty site, and it took hours to clean up!!!!

What would you do if you could not provide your child with services because the services didn't exist? This is the life of the children in Uganda with Autism. Many of these children no longer have parents and are left to raise themselves and siblings. Autism Uganda works with community members and leaders to bring help to Uganda's autistic orphaned and desperate children.
 
Their mission is to bring a new hope to these children by helping to meet the increasingly high  numbers of Ugandan children with Autism. In order for these children to have a chance to do more with their lives than simply cling to life, they need the basic materials for education. Think of the little boy, Kalumba Mustafa, in the picture, he is only four years old and lives in the Johnson Orphanage School. They don't have parents who give them the hope, love and challenges that they need to succeed.






 Johnson Orphanage School has been successful in providing many of these tools for many children, but there are still many more that need  help. In the village of Bbira, the Center has put up a school house that serves both as classroom and shelter to over 150 Autistic children. Items from pencils to toothbrushes have been donated by many generous individuals and are being used right now to improve the lives of many children. 


Nevertheless, these children still need other important basic needs, such as clean drinking water and a blanket or a mat to sleep on. Recently, they had a water shortage and they do not have the funding to get piped water to the center. They need all the help they can get. If you cannot help financially then please tweet this. Maybe you could pick up an extra package of soap and ask friends to do the same. School supplies to mail to them. Every little bit counts and helps. 


You can help provide these children with a place to sleep, a well from which to drink and a book to read.  I hope that you can find it in your heart to spread this around and help these children in Uganda. Together, we can make a difference, one child at a time.

My son Chucky has a Facebook page, where he has met many other children with Autism. The page is written and monitored by me. The whole thing started because my page had become all about him and advocating for him. I wanted my space back. I know that is selfish right? I don't care!! Every bit of my world revolves around my children and I wanted something of my own. So, his Facebook emerged.

Basically it is a page where people who were interested in knowing how he was doing and noting milestones could see them. No one can search for him. They can only request him through a friend of his's page. I am very selective about who I accept. My son loves his page. He enjoys reading everyone's comments to him and he really enjoys seeing the pictures of children that are like him. He has made a couple very close friends. This has given him some socialization. He wants to talk to his friends on the computer and he looks to see what is going on.

It is also wonderful for me. I can talk to other Mom's who understand. They know what I am going through and can give me reasonable solutions that they have tried with their angels. Well, I am not writing to justify my son having a Facebook page because I don't really care what anyone else thinks about it. I am not trying to be rude either just honest. My son met a little boy Jake on his page and has been communicating through pictures and their diaries for about six months now. Jake's mom and I are sure to read the comments to them and show them the pictures as well. We also have mail correspondence.

The other day Jake's mom and I had discussed sending a crocodile to stay in Australia for a month and during this month they would take pics of him in Australia. The thought is that after the month it would then travel to another special needs home with a note and spend a month there as well. They would also take pictures and post them either on a blog, Flickr or Facebook. Everyone's pictures would be on one site and added to by the carer of Mr. Crocodile.

My only thought about this is that he might get lost. What if it goes to someone who cannot send it forward? Does anyone have any thoughts or think they would like to join us in our adventure? I think it would be awesome to join our special needs children together in a special way. What do you think? Do you want to have special time with Mr. Crocodile?

I have discovered a new way to keep my house calmer. I am not sure how long the novelty will last but for now I figure I better spread the news. Maybe then someone else might find it useful as well. Again, I am not sure how long it will work, but it is totally worth trying it out. My house has been calmer for a week now. That is amazing.

Music has always been a source of comfort to many people. Some people play an instrument and others listen to music. Some can even sing!! My son loves to sing song everything and adores anything that makes sound. Musical instruments make him really happy. This is what prompted me to attempt to ease the school to home transition using a drum. I know, this could backfire right? LOL.. Worst I think could happen is a migraine, minus the bruises. Hey, I get a migraine with the severe melt downs along with many bruises.

I have decided to incorporate the use of a Djembe drum after school. I bought this drum for my boyfriend for Christmas and he has suggested allowing Chucky Cheese to play it. He really lights up and has an infectious smile when he is making music. It is a big part of who he is. I enjoy seeing him so content and it is wonderful to watch him discovering new sounds.

His love for drums is fairly new but was inspired during a meltdown when we discovered that it calmed him. He was able to be aggressive without hurting himself or anyone else. This is a spectacular discovery. I am sure my legs and arms are thankful. His whole attitude and behavior after school seems much better. I am extremely pleased that it is working in this way. Hopefully this will last a while and he will be able to stream his energy towards something very productive.

I would love to get him more musical instruments to explore and eventually I will be able to do this. Hey, you never know, I may just be asked to review a product of this nature (hint hint). Well, I really hope that maybe someone else can try this trick and find it helpful. Coffee cans and popcorn tins work great as drums and you can make a lot of homemade instruments. Enjoy, I know my little man is much happier since I have started this routine.

Many people lately keep asking me How do you do it? I actually had someone tell me that if they had a child like my son they would have already dropped him off with his father and told him they would be back in a couple years. This was appalling to me but also makes me realize how strong you become when you have a special needs child. Everything you may have thought you couldn't do you find yourself doing.

This post was supposed to be about potty training and then it turned into something entirely different but I think that is OK. As parents of children with special needs, we have to change plans quickly. We have to come up with alternate plans and unorthodox ways of doing things. We have to accept that our way may not be the only way. Most of the time, we have to let the child teach us how to teach them. They have to take the lead.

I think they bring us into their world. A world that we have never experienced. A world that is amazing to them. A world where everything makes sense to them. I love learning about my son's world. I love it when he allows me to join him and learn with him. It makes you expand your horizons and constantly look for new methods to make things easier. They can feel, see, and hear all the hectic and chaotic things in life that we have seem to have become numb to. They can appreciate the smaller gratitudes that happen every day.

Being a mother means having unconditional love. It saddens me that some people have children, realize they are different than most, and never challenge them. They instantly lose hope for this child. They need to be challenged, they need to know that you hold the same expectations for them as you do any other child. They need love. Not love from therapists, and providers, but love from their parents. I see all the down syndrome babies that are in orphanages and it makes me cry. Do these parents even realize what they are missing out on? Becoming a parent shouldn't depend on whether the child is typical, or what struggles you might endure. It should be about giving that child everything you can give them. Every tool that they could need to succeed.

So, to the person who told me that she wouldn't do my job, I pity her. She will never know the love that I know. She will never know how it feels to watch her child struggle so much to accomplish the littlest of tasks. She will never know the joy that comes from that either. The unconditional, heart wrenching, tiring, love that binds my children and I as one. I am glad that I can be that mom. I am glad to have my children and I will never be ashamed of them. I know one day my children will be spectacular beings, doing spectacular things. I have faith in them.