Autism As A Whole

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?

Image by K!T via FlickrIt has been a very hectic time for my family so I have taken some time away from blogging. I am trying though and I am constantly thinking about things I want to blog about but can't seem to write it out. I am just so packed with new information and I need time to process and sort it all out. I hope you all understand. As I signed in this morning I noticed that my audience has grown quite a bit and that makes me happy. Are you wondering what topic I am going to rant about today?

Have you ever said something to someone and had it interpreted completely wrong? Imagine hearing everything that way. Children on the spectrum go through this everyday and it must be confusing. A friend that I spoke to said that it is almost like living in a different country and only having a limited knowledge of their language so everything is strange and unorganized. Another friend described it as a Charlie Brown episode and only hearing certain words in a conversation.

I bring this up because the other day my son came home from school really excited and confused. He was telling me a story about his speech therapist and how she had asked him to help her make copies of her copy of the school. He said she lifted the whole school and made a copy of it. I was laughing so hard and got yelled at for laughing. He did not think it was funny at all. He seriously envisioned her lifting the school and putting it on the copy machine. He said she was very strong!

This was a prime example of how literal our children are. I remember when he was little and I had said it was raining cats and dogs and he was looking for the cats and dogs in the sky. It was pretty funny but it also showed me how literal they really are.

I have noticed lately that my posts are not getting many comments. I hope that this is not because of the pathetically depressing posts my fingers are typing. I know that in my blog I mostly discuss my children and how having special needs children is as a household. I try to keep it positive because there are positive aspects. Last week though is a complete blur. I have been recovering my sanity and I found the perfect cure. Listen up this is good!!!

During my mental breakdown, that was seriously triggered by a diagnosis, I called my local Mental Health. I  cried and told them I needed an appointment really quick. They got me in amazingly quick, they probably though I was going to go postal if they didn't. Yes, I was that upset. It was ridiculous but normal. I went into the appointment and was a bit nervous because I haven't needed therapy in almost 5 years. I was taking 20 steps backwards, or so I thought. You see in 2 hours I explained my whole issue. He asked how I was and I said, I;m here, and I'm still alive. He nonchalantly said, well thats two points for you. I don't know why but he was comforting and easy to talk to, although I am sure that any stranger that would listen to me cry and complain for two hours would have worked. I just chose the costliest method.

I explained about my boys and all that had happened for the week. I explained why I felt to blame and even asked a few questions, but he didn't have to answer them because I answered them myself.  I probably sounded like a ranting lunatic that wasn't even coming up for air. But... After I vented, he said the most amazing words. He told me that he would be overwhelmed as well and it was overwhelming to listen to. While a part of me says that it is his job to make me feel better I want to believe that he understood. I can say that after I left the appointment I felt so much better. I started eating regularly again and I was happy. I slept really well that evening as well and the next day I felt like I could conquer anything. I think I was feeling a grief for my son and I had to release it  before I could move on.

Well the Mental Health agency called me yesterday to appoint me a therapist. Funny right? I told her that I wouldn't be able to go in for a couple weeks cause my son had appointments. I also told her that I wasn't sure I needed to go in at all because their intake worker was amazing and I felt 150% better after I talked with him. She stated that was great but it might be good to have a support there through this stressful time. I wonder if she really meant that or of she was saying it because of her paycheck. I am going to appease her and go back. My old therapist left and I was with her for a long time. I guess I should at least make sure that I have my mind together.

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.....

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.

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 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.

As I was watching the snow fall outside last night, I considered the prospective that the children may have yet another snow day today. This is concerning for many reasons. They have already used 5 snow days and we only have 6.  His mood reflects the routine change which makes him very difficult to handle, but most importantly, he regresses when there are major schedule changes such as no school.When I mentioned this to a loved one, they said, If he is regressing when he isn't in school then he must not be getting what he needs at home. I took this very offensive and while I do look at my parenting, and judge myself all the time, I also see how much I do for him.

I called the school yesterday and spoke to his Occupational therapist. On a positive note I did this because my son actually came home and told me about school. He told me that his OT made him fall when he was holding her hand. She stated that Charlie seemed to be very off. He was walking while holding her hand and just fell. He didn't trip, just fell. She said that he has seemed really weak lately and is having trouble with some simple exercises that he is used to doing. She also stated that when she mentioned it to his teacher she agreed. After discussing with his OT, I called his speech therapist and while she said that he has made tremendous progress, she also said that his low muscle tone is affecting him. He has trouble cutting an orange and sitting up in his seat.

I see these problems at home as well and over the last two weeks he has had a glazed look in his eyes. Almost like he is physically here but mentally he is in his own world. I really do try to interact with him and teach him. I work with him but if he is not receptive then I give it a break. I think that I am doing the right thing but I really do not know. Am I wrong for not doing therapy every second of our day? I really do try to do everything I need to do and I want to be perfect at it all, but I am not perfect. Another statement that was spoken was "How do you feel that someone else knows how to work with your son better than you?" This brought on the tears.

The statement made me think back a couple years when I couldn't reach him. When I did everything to try to make him look at me. When a hug was rare and he he couldn't speak. It was at this time that I worked with him constantly to try to help him. I asked for help that I guess in other's eyes I didn't need. I should have been able to teach my son. But, I really thought he hated me. He hated everyone. I couldn't hold him to feed him and he wouldn't coo at all. I got services when he was 7 months old. They continued till now and this child didn't speak until he was 3 years old. It hasn't been an easy road and I didn't sit back and push it off on someone else.

Children with Autism do regress. It isn't always a horrible thing, although it definitely feels like it at the time. They regress because of change in schedule and environment and sometimes they regress when they learn a new skill.
Yes, I take time to blog and I take time to interact with other parents. Do you blame me? It is not only my escape but also my way of learning more and teaching others. I can support parents that are in the same boat I was a year ago. I can figure out different methods to deal with certain situations. Mostly, I know I am not alone. I know that it is OK to feel overwhelmed and to speak it freely.  Am I wrong?? Again???

I have other children and as I have mentioned they don't get much of my time. I wish I could change that. Life with a child with special needs changes everything, but it will only affect your relationship if the parties involved allow it to. I think we all need recognition for the positive aspects we have. Stand behind me so if I fall you can catch me. I analyze myself enough and wonder all the time what I could do differently. Unless you can truly relate then don't judge it. It has been a hard winding road and there are times in which we walk backwards but we always get back on track.

Am I wrong for feeling hurt? How would you feel? I guess it doesn't really matter but I question my job everyday and when someone I love has such harsh judgement, I feel more uncertain. Truth is, I know I do my best and I know that I could not change the way it is with him. There is nothing I could have done to prepare for this.

Do you ever wonder if you are failing as a mom? Is it your fault your child is coming home with poor grades when you know she/he knows the work? I am having those thoughts and they are eating me alive. When I started this blog it was meant to provide some insight into the life of my whole family. How it is for all of my NT children to live with a child with Autism. How it affected my children's relationship with me and vice versa.

I mentioned in a previous post about how I felt conflicted. I felt like I couldn't comfort Chipmunk when she needed me and monitor Chucky during his meltdown. Chucky needed me there to ensure that he didn't hurt himself, but Chipmunk needed me there to comfort her. This is really challenging. Am I the only Mom who has this struggle? Well, you are probably wondering what prompted this post.

Today, Princess brought home a 66% on her science test. It was about simple machines and I am certain she understands them. She loves Science. It makes me wonder if she is just having a tough time because of how much of my time is devoted to her brother. I really try to help her with things but it is so hard. I am constantly interrupted and she gets frustrated. I do try and I am trying different approaches. I just am not sure if this is her way of protesting or a teenage issue. I want her to do well. I don't want to have our days filled with one problem after another. I want to be able to enjoy my daughter again.

I have tried to do things with her before she goes to bed at night. We have played her favorite game and sometimes we just sit and talk. Well, she talks cause I can't seem to get a word in edgewise. I think I mentioned this in my Talk-a- Holic post. Does anyone know if there is a talk-a-holic anonymous group? We even started taking photographs in the morning before her brother woke up. She really seemed to enjoy this and so did I. But, unfortunately I think with all of the recent snow days and such things got off track. I am going to try to start this again.

Honestly I think if she did as much listening as she did talking she might actually be able to do the work correctly. Sometimes I think that I am too hard on her, but most of the time she just isn't doing what I know she can do. It bothers me though that I don't have enough patience, arms, legs, mouths, hands, or ears to give equal attention to all of my children. I guess tonight I just feel inadequate. Inadequate as a mother. Incapable to do this job that is in front of me. Can anyone relate? The job of motherhood with multiple children is hard enough but when you add special needs children to the mix, I think it can become overwhelming and very very challenging.

I picked my oldest boy,Buddy,  up from his dads on Monday and noticed his head was shaking. He was shaking his head no but he had no control of it. I thought it was just a tic but couldn't remember seeing him do this before. I asked his dad who was unsure as well, so we decided to call the doctor. They wanted to see him at four o'clock yesterday. I made sure to video some of the behavior and as I was watching I noticed it wasn't just his head but his whole body was twitching. He even seemed a bit disoriented after severe twitches. I was concerned. 

We went to the doctor's office where his father met us and he was still twitching. I showed the doctor the video and he also checked Buddy out.  The doctor was really concerned because he didn't feel this was a typical tic. This resembled seizure like behavior. They ordered a sleep deprived EEG to check his brain waves. Buddy was not happy. He gets upset and scared very easily. He didn't know what this test was and assumed it would hurt. We tried to reassure him. I am awaiting a call from the doctor regarding where we have to bring him to get this done. 

As we were leaving the doctors,Buddy got in the car and I was wrestling to get Chucky Cheese to get in the car because he wanted to play in the snow. He started running to get in the car, Buddy opened the door for Chucky Cheese but he didn't see it and ran right into the car door. This left a gash on his forehead. I am not good with blood. At least not blood from a loved one. 

My boyfriend took my son to look at his face and I went t get paper towels as he was bleeding. The nurse from the doctor's came outside to check on him. It was an ER visit. Looked like he needed stitches. Thankfully the ER went quick and they pulled us through fast track. They were amazing with him and he was a trooper. The doctor explained things and made him feel safe. I can say it was one of the best hospital trips yet. They glued him, which made it much less traumatic and we were off. Whew what a night. 

So, Wordless Wednesday is filled with words but more so with thought. I can't seem to calm my mind and I am concerned for my Buddy. I hope it will all turn out ok and things will ease. I hate seeing my kids having a hard time.