Autism As A Whole

I got a new pill crusher that works amazing! 

His Nexium was finally approved!

AND.................

It's been a while, I know but so much is going on and it never seems to give me a break. To make matters worse I have some serious writers block and that makes writing VERY difficult. Lately doing anything outside of typical routine is torture. I am not sleeping well, have zero appetite and am at a complete loss of words. What started as "Autism" has hurdled into huge medical problems and some of which they can not fix. I just want my baby to be ok. I want the damn doctors to get their heads out of their asses and figure out how to help him. I can't stand seeing him deteriorate in front of me. His color is changing and most days he is quite pale. In the picture below he was sleeping under his blankets(face and all) so his cheeks are flushed but the color around his eyes is what his complexion has been. Isn't that a little scary? Doc says his neurological functions are not good but can't determine what is causing it and wants the muscle biopsy done asap. I AM SCARED!!!!

Just wanted to share this video that I updated and created. The words were by, Ellen Notbohm. Amazing author! Enjoy

I am sitting here trying to settle a dispute between my children. Buddy is tired and the others wanted to play a game.Oh boy, now the youngest is going as well. How do you explain to the other children that sometimes things just can't happen?

The girls have been getting very angry with the boys. Sometimes I feel as if they can't even breathe correctly without the girls complaining. I wish I knew how to explain it to them but I don't. It is one of the hardest things as a mom, not knowing what to say or what the answers are.

Maybe, there are still some readers out there that might have some suggestions, answers or just support and understanding. Sometimes I feel so alone! I know I am not but I just feel isolated. I ask myself if that is normal but unfortunately, myself cannot answer these questions.

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.....

Since it is Throat Punch Thursday and I have many people I would love to have my way with, I think I will continue with my medical mystery!! When you first start visiting doctors you are determined to fix things and excited to see a new doctor to get a different perspective. The determination doesn't go away but as you keep being derailed and detoured you end up losing faith in them. Them meaning the doctor's of course. Do you ever wonder where these doctors get their medical degrees from? Some of the things these specialists have said to me were ignorant and caused me to question their judgement. 

Well, as if the first part of this wasn't enough there is more, which is why I chose to write two posts. Who knows, I may actually need a third as there is way too many variables to consider. After re-reading my first post I realized a few points that I had left out. I think it is crucial because as fellow parents and people in general missing details can really change the viewpoint of these posts. So, to clear a few things up I need to clarify a few things.

The title of this post is exactly what I told a guy in the grocery store when he asked for my number. Yesterday after I dropped my son off at his dad's house, I went to Hannaford to pick up a few items and cash a check. The line as I walked to cash the check was soo long that I opted to go shopping first. As I went down the aisles I noticed I was wondering and my mind was empty as to what I needed from the store. I slowed down and remembered what I needed but still seemed to struggle to find what it was I wanted to purchase. I think I just have so much going through my head at the time I am really having trouble functioning in society and life. I can't relate to "typical" parents any more and I find it frustrating to even try and discuss what is going on with anyone. That is half the reason I haven't blogged., I can't seem to put my thoughts into words. I don't remember what it was like, before I entered "Holland" , to have a regular conversation. I always seem to be talking about my children or helping someone else get through the beginning stages of acceptance. I need to find myself again, I need to take that time. I am overwhelmed with grief and anxiety that I haven't felt this strong in a long time.

I guess I should update you as to what has been progressing or in better terms regressing. Chucky Cheese has been struggling a lot. It started with his physical therapist calling about concerns and me being the Mama Bear, getting protective. I almost went down the path of denial but.. that would not have helped so I pulled myself together and brought him back to the doctor's. As you might have read in  previous posts here, here and here, he has had some muscle issues going on. This problem has now exasperated into a huge problem. It has gone beyond the typical "autism regression" and is portraying itself as a Muscle Atrophy now. Boy. that sounds pleasant eh? Charles' right leg is visually bowing in. It curves at the hip, at the knee and at the ankle. He is losing complete function of his right leg and has much difficulty doing normal everyday tasks let alone regular six year old boy stuff. I find him constantly falling and he is so unsteady. He is even having trouble riding his bike which I was proud to say that he mastered last summer. I have brought him to the pediatrician, neuro-developmental pediatrician, neurologist, orthopedic, urologist, and a neurosurgeon. Why so many you may ask? My son is currently a medical mystery. No one can figure it out.

He went for a 2 hour MRI which showed a syrinx, cyst of fluid, on his spinal cord from T6 - T10. That is a pretty large span and at its widest point measures 5 mm in diameter. Doesn't sound so big but... Your spinal cord isn't all that huge. He did amazing through the procedure and woke up in a pretty decent mood.






Lately his eating habits have decreased, he lost weight, is losing upper body strength, hand eye coordination and has been having some serious behavioral issues. He is also urinating the bed and himself. This is happening at home as well as school. He was 100% potty trained!!! Can you understand why I am so overwhelmed? The neuro-surgeon does not want to remove the syrinx at this time and suggested a urologist and neurologist. So, I followed his suggestions and still have not found any answers. I am completely frustrated.


I need to tell you how ignorant these doctor's can be and how traumatized I am as a mom and my son as their human guinea pig but I think I have to start a new post for the rest. So.. If I haven't traumatized you already, there is more in my next post. 

I wasn't sure if this Qualified for Throat Punch Thursday at If This Is Motherhood , so I commented and Debi read my post  ensuring me that it is in fact a Throat Punch Week and fits. So here it is. I share it with you all.

The holidays are here and that can be really hard. It is overwhelming for me as a parent so I can't imagine how my son perceives it. I know the pain that hits your heart when a child you love so much seems so far away. I know what it feels like to get them a present you know they would love and not even have the recognition of a smile or hug. I know because I live with it everyday and in the begining I was just like all of the outsiders in my life. They don't live it and understand it. They haven't been around it long enough and I can understand their feelings.

While I can understand it I do have to say that in no way does that condone shunning a child. They do have feeling but it is harder for them to explain them. They are happy with the spinning top that I am sure he will play with for hours nonstop. Please take the time to enter into their zone. It may be easier for them to let you in. Try taking them to a quiet place and show them how to use their new toy. Try to join them in however they want to play. Basically, Just try!!!

Here is a poem that someone posted on Facebook and I thought it was fitting.

Well, summer school has ended and the chaos never seems to end. I clean, they mess, I clean again. Physical fights and screaming throughout the day. I am not sure how every other parent does it without losing their minds. Any thoughts? I went camping with some friends and all of my children and it went pretty good. At least better than expected!! There were a few meltdowns but they were manageable. It seemed to be a stressful trip for me though because I was walking on egg shells not sure what would trigger them.

Nevertheless, we had fun and the best part was the kids faces when they went swimming in the lake. Chucky loved the Orange buoys.  My camera broke when we were there so that is an extra stresser cause I don't have enough right? Chucky has been having toileting issues as of late and I am not sure how to handle it. He is wetting himself throughout the day. Isn't regression great? I am so excited to clean pee off of every floor in my house. Yippeee!!! Sorry for the sarcasm but I did say I was stressed.

I haven't been blogging as much cause it is so hard to concentrate anymore. I cant sit here for more than 3 min without an interruption and then I never seem to get back. When I do, there is other things on my mind and I just cant write. I hope this gets better with school coming up and I can sit down and maybe finish some of the 50 drafts that I had started but couldn't finish but don't hold your breathe. I just wish some of this craziness would ease off for a little while. Well, that was a scream crash boom...... Gotta go!!!!

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?

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!!!!!

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.