Autism As A Whole: parenting

Showing posts with label parenting. 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.....

Saturday, May 12, 2012

Sorry, No Time For Anyone.. Not Even Myself....

Unknown 5/12/2012 4 Comments

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.

Saturday, January 14, 2012

Live, Love and Encourage

Unknown 1/14/2012 2 Comments

Things have been really hectic lately and all the schedule changes, vacation days, and school delays have really taken a toll on Mr. Chucky Cheese. His behaviors have been so far from desirable. There has been a lot of screaming and uncontrollable rages. I am at my wits end on how to deal with him sometimes. There are not too many parents that I know personally with issues like mine and so it is really hard to thoroughly get it off my mind.

Earlier in the week my sister stopped by my house and Charlie was in mid melt. She tried to approach him and he was not responding. It was really hard to try to step back and allow someone to try to help because I knew in my mind that he was beyond calming down. This had to take it's course and likely there would be another one to follow. She really did try though and I found it interesting that her face seemed to bear the same pain that I feel. Watching him so upset and wanting to help him but knowing he needs me to stay away. She was seeing what I see every day. The tears and screaming, face getting splotchy, wanting to rock him , hold him, love him but he won't let you near him. He looks so confused and angry in this state and at times it is very scary. I often find myself wondering what I am going to do when he completely overpowers me. What will I do? What will others do?

Yesterday, my sister had called and was going to stop in after work but opted not to. I asked why and she said she felt as if she had upset Charlie by stopping by. I assured her that he had already been screaming for 15 min and she seemed to feel as if he would have stopped when she showed up. In some cases this is true. She can on occasion pull him out of a melt. This meltdown, like most of his lately, was not that easy to fix. I felt sad that she felt my son didn't want her here cause he really does love her.

I wanted to tell her about how I feel when this occurs. I wanted to tell her how I thought my son hated me for years. The thoughts emerged to relay to her that those very same feeling she had are mine on a daily basis. But, I didn't. Instead I find myself wanting to beg her not to walk away. I know she wouldn't cause she loves her nephew, but the thought still creeps on me. I want to show her all the adorable pictures I can so she can forget the face of pain and hurt. I don't want her to ever feel as if he doesn't want her here. I know how that feels. I know that pain and I don't want anyone to feel that.

Chucky Cheese is an amazing little boy and I know he doesn't mean to act the way he does. He loves life but seems to get so confused and overwhelmed. He doesn't know how to communicate it all. He lashes. This past week was the worst I have seen him in a very long time. I have to look for the positive things even when it seems there is no good.

I feel I have to share the end result of another meltdown that happened this week. Chucky was upset over a school delay and melting snow. He really got upset and opened a brand new box of noodles, throwing them all over the floor. I was already totally overwhelmed and had another mom call me to talk me through the morning. I walked away into another room and when I went back in the kitchen, this is what I found. He had made a letter "C" on the floor with the noodles. I had to take a picture of his accomplishment as I am excited over the small moments.

I know that many parents don't understand the small joys that I celebrate and that it probably drives them nuts to hear me constantly talking about them. I hear the lack of excitement but I don't care. I need to share these moments as much as they need to share the fact that their child made the honor roll or scored their first touchdown.

These joys I celebrate are the same to me as your baby's first steps because I waited so much longer to see and hear the things that most hear much sooner. I still get excited when my son says "I love you" and when he looks me in the eye or hugs me spontaneously. I also feel the need to rejoice and share these moments with whoever may listen disregarding their lack of understanding or interest. We all live our own lives and rejoice in our own moments. We also all have fears and for some they may be buried pretty deep. But, you can move past that because I was that fearful parent without the knowledge of special needs. I was thrown onto a planet I knew nothing about. I am thankful to the wonderful new support system I have that we all need.

This post was inspired by my sister at If This Is Motherhood. At first her post angered me. Then I realized that everything she had written I had already known.

Monday, May 16, 2011

Am I losing my mind???

Unknown 5/16/2011 0 Comments

I just have to express how hard it is to raise a pre-teen and I find it scary to think that she will be a full blown teen very soon and it is all downhill from here! Currently, I have to practically beg her to shower and clean her room. I have to force her to do her homework and man, I honestly think that someone spilled super glue on the couch because her ass is stuck to it. Please tell me someone can relate. This shit is gonna drive me nuts. Or, am I already nuts?? She thinks I am. Maybe she is right.

Yesterday I told Princess that if she chose to leave her dishes and not put them in the dishwasher then she would not be able to eat again until she hand washed the dish. That sounded reasonable to me. Her, not so much. She looked at me and said,"Wow Mom, that's harsh!!". Harsh, she has no clue what harsh is. Harsh to wash a dish. Ummm... I'm not beating her or making her wash all of dinner dishes. I think it pretty easy. But again, her mouth does not shut. I think that is another issue lately. She has a case of Diarrhea mouth. I truly hope that is what it is because it seems as if she has no control of the shit that quickly flows out her mouth. Everything I say to her she has something more to add. It never ends. I sure hope they continue to grow as fast as they did when they were little so she can grow right out of this stage. Then she can slow down again. Better yet, has anybody found the reset button?? Even a rewind button?

Well, I guess I am done with my rant and I think I really am going crazy. But... this to shall pass, I hope!!!

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, March 3, 2011

Strangers Are Good For Many Reasons.....

Unknown 3/03/2011 0 Comments

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.

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!!!!!

Thursday, February 17, 2011

Denial....Am I?

Unknown 2/17/2011 0 Comments

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.

Then there is Princess who seems to be going through something that resembles ADD but I am in denial. I changed my header and intro to thoroughly describe my family. Writings seems to have eluded me and I couldn't put it into words. I feel as if every time a child seems to hit a rocky road, people are all too quick to throw a diagnosis out but ADD does not occur overnight so maybe it is just a stage. The secondary thought is maybe I am in denial. I am going to try Focus Formula because it an all natural formula that helps with ADD. I will definitely report on my findings.

Why is it so hard for me to accept this. I dealt with Chucky's diagnosis, but it was so clear and evident. I just can't seem to wrap my head around all of this. I think dealing with one special needs child is hard enough but now there is two possibly three. Buddy's teacher, OT, and school nurse called me today regarding his "Tic". It was really bad the last two days and they saw it. His teacher said that he was twitching every five seconds and it was interfering with his work. Now I am worried. The last time he had an episode it lasted a week and ended with a three day headache and neck pain. I hate to see him suffer and go through all of this.

I called the doctor who wants to see him and refer him to a neurologist and a developmental pediatrician. Now can you understand why I am overwhelmed? I feel like I keep hitting brick walls. I called RCAL, which is the Resource Center for Accessible Living, because I was feeling overwhelmed with all the advocating necessary between Buddy and Chucky, I could use some help. In my head I feel as if some of Princess's problems may be related to the lack of time to spend with her. I know she needs me I just can't seem to stretch myself far enough. I am always on the phone with one specialist or teacher after another and if not with them my kid's father. It is overwhelming and I wish I knew how to manage it all.

RCAL arranged for a student to come to my house as an internship and do respite for Chucky. I hope that after they become familiar with each other it will free some time for Princess. This will allow her some Mommy time and Chucky Cheese gets some individual one on one attention. As if he doesn't get enough already...LOL
This is when I wonder why it is so hard. I love my children even with all of their quirks and I want them to succeed. I just can't see all the answers. Everything seems so far out of reach right now, but I am sure that I will overcome this. This will get better and we can continue down the path of discovery.

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?

Tuesday, January 25, 2011

Please Duplicate Me

Unknown 1/25/2011 0 Comments

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.

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.

Friday, January 7, 2011

30 Days to Change

Unknown 1/07/2011 0 Comments

My sister is doing this wonderful blog hop and I am going to ~~attempt~~ maintaining it. Here is what this hop is about: This is a monthly Blog Hop with weekly updates. Your first post should be your goal for the month, why it is important to you and what steps you are hoping to take to accomplish it. Then 2 updates, then the final week will be for telling us how you think you did. You don’t have to remember that. Each week,she will remind you what the post is supposed to be about.

Anyway, pick a goal, any goal, write a blog post about it, link up and let’s all support each other toward actually accomplishing something this year!

My goal this month is to do more activities with all of my children.

Some may see this and think that I am lazy. What I mean by this goal is that I want to try to do things individually with each child. When you live in a household with children that have special needs they tend to take the spotlight. They constantly need your attention and the other children tend to back down and just go with the flow.

I don't want them to back down. I don't want them to melt into my background. I don't know if it is just me but I feel as if I use all my patience on my youngest and then it is near to none with the others. I want to enjoy spending time with them. So to start my 30 days of change I am going to try to spend some time with each of my children doing something they enjoy. This is partly why I am in so much pain today because I played Just Dance 2 on the Wii last night with my daughter.

I hope you decide to join along and feel free to give me ideas too. I definitely will need support through this.

Saturday, January 1, 2011

Different But Not Less....

Unknown 1/01/2011

Now that the holidays are over, How did yours go? Did you have endless meltdowns or did it go better than expected? I think this is a great blog hop hosted by Adventures in Extreme Parenthood. I think I might add a little thought about how the aftermath f the holidays have been.

Let me explain why... Chucky.... (minus the cheese for this one...) tolerated Christmas very well. We even went to a family dinner and we didn't have any melts. Amazing right? Don't get over excited yet ok... He did wonderful while we were there but lost it after we got home and Christmas day went OK too... There were a couple melts but nothing atypical. Couple days later a maniac entered my home, with inconsolable tantrums and problems sleeping. Today, well lets just say after I picked him up from his dad's house he had a 20 min meltdown. We made his bed with a new comfy and sat in his calm room. He was fine then. I think with some preparation our holidays went well but the aftermath of all the activity will still hit you so good luck with that.

How does your family celebrate the holidays?
The holidays for us are pretty simple. We get a tree decorate it, listen to music (which is almost impossible with my son), and enjoy each other. We make visits to loved ones the day before and stay home on Christmas day.

What changes have you had to make due to raising children with special needs?
The noise level is quieter and my son can open gifts when he is ready. A lot of times he gets overwhelmed. This year I bought less items but they were more expensive. It worked out better for both of us. He plays with what he got and i am not tripping on useless toys that he lines up in the middle of the floor. LOL

If you'd like to join the "Different but not less" holiday blog hop you can do so by writing your own blog post about how your family celebrates the holiday season while balancing the needs of your child with autism or another special medical condition.

Simply add your name (or your blog name) and the URL to your blog post in the Mr. Linky located on her page and we can visit each other's blogs and share ideas, tips, and inspiration.

Lets get hopping!

Wednesday, December 29, 2010

Dec. 29, 2010- Wacky Wonderful Wednesday

Unknown 12/29/2010 1 Comments

Well, boy, I have to state that yesterday was a crazy day. Have you ever seen something as it was happening and couldn't stop it? I had this happen yesterday. I already talked about that today though but I omitted what I said when my son got hit with the door. All I could think was Shit!! As the thought came into my head I shouted it. Ooops..... Children around me and I was in the parking lot of the pediatrician. Ummm... just a little awkward eh? The funniest part, was my son's response to this was Shit Shit Shit as he was twitching his head no. While it isn't funny I guess it makes it easier to cope when you can laugh at the smaller things. Laughter is good!!! His dad asked him if he wanted a piece of candy and he said yes but was shaking his head no so he said to Buddy, No you don't want candy. Buddy just laughed. He knows that his daddy was just kidding. LOL

So, What is your hump day funny or just a hump day moment you want to share?

Join the hop.

The Crazy Hectic, Unexpected Day

Unknown 12/29/2010 8 Comments

Ever have one of those days when nothing seems to go as planned? Have you ever seen something happening in slow motion right before your eyes, but you cannot stop it from happening? I had one of those days.

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.

Friday, December 24, 2010

Want Reaction, Don't Look Here...

Unknown 12/24/2010 5 Comments

How are family gatherings for you with your special needs child? Do you cringe like I do with the thought of going to someone else's house and around a bunch of people? These things are actually kinda scary for me. Then I have to wonder how he will react to things. Will he say thank you and smile when given a present? Will he have a major melt on their kitchen floor? Are these normal concerns? How do you prepare for holiday gatherings?

Yesterday we went to a family dinner, I know scary right? Actually the dinner part went really well and my sister was sure to have a drink that Charlie could have and would like. This shows some awareness and I am so grateful for that. She even made sure that he had a quiet place to go when he felt overwhelmed. She is really good with him. They used their best China (paper plates) which worked wonderful. Not only did it save her on dishes but it made it easier for Charlie cause he didn't have to deal with the noises from the silverware on glass plates. Whew, one more accommodation that, although there were other reasons for it, made it easier for him to cope with the gathering. My sister even turned the music off so that Charlie could eat at the table without his head phones.

Charlie did extremely well last night. I was impressed. He sat at the table and attempted to eat. He ate a lot of sweet potatoes and even attempted to try the Manicotti. Dinner was great very tasty, and it even included a little conversation. Some of this provided by Charlie telling his Auntie that he could eat sweet Potatoes all day long. Mind you he said this quite loud but nobody seemed to mind. Hey, it is better than him screeching or crying right? He then retreated to a room by himself to play in a quiet zone. He was playing with my nephews stuffed animals and talking to himself. It was really cute.

Present time, which happened before dinner was interesting. My kids sat down together to open presents and Charlie was opening but not really excitedly and not paying much attention to what he was opening. It appeared that he wasn't happy with it and that made my sister question her choice for him. Just so you know, he loved it. He just can't express it. He didn't smile, just took his box and walked away. No thank you or anything. I know, that was my big concern. Was he going to appear to be rude or ungrateful?

My sister, a little thrown off my Charlie's reaction, or lack of, decided to take him to a quiet place and open the box. They went into another room and opened it. It was a huge Sponge Bob floor puzzle. The floor puzzles have been an all around wonderful gift for Charlie that he enjoys a lot. His Auntie has been getting him them cause he enjoys them so much. It has kind of become a traditional gift for the two of them. I haven't told her, but I thought about purchasing one for Charlie for Christmas and opted not to in hopes that she would get him another one. She did and when they sat down together to put it together he was so happy. The evening went spectacular at her house.

The over stimulation really kicked in when we left. He had a melt down in the car because we unbuckled him and he couldn't find one of his stuffies. It is ok... we found it. *sigh* When we got home he flipped because he was asleep and we unbuckled him. Oh My he was kicking his feet and screaming like crazy. I wonder what the neighbors thought. Wait, they are accustomed to it now. LOL.. I remember when we first moved here and after a month the lady across the street asked me if everything was OK over here.

I tried really hard to calm him and pick him up but his arms and legs were thrashing inside the car and it was not possible. Meanwhile his sister was sitting on the other side of the seat dodging the feet that were flying towards her face. I, overwhelmed by this, yelled at her to get out. Looking back on the situation, I know that she was probably just as overwhelmed as I was and couldn't process getting out of the car. My boyfriend lifted him out of the car and I looked for the stuffie. I found it and brought it inside.

There in the foyer, was my son screaming at the top of his lungs. I picked him up and rocked him back and forth. He was still so upset so I proceeded to carry this screaming and kicking child up the stairs. I put him in bed and eventually he calmed down and went to sleep. I can't say that was the end because he woke up screaming in a complete night terror mode at 3:30 am. This lasted for an hour and a half. We fell asleep together but I was on the bottom of the bed because he did not want to be touched.

The gathering went very well and I guess even though I felt the aftermath, my son was able to keep it all together for the party. It shows that he is comfortable to let loose while at home and maybe he is learning how to control his behavior in public. All, I know is I was overwhelmed and tired but, I am proud of my son and his strength to get through such a stimulating event.

Thursday, December 23, 2010

Wacky Wonderful Wednesday

Unknown 12/23/2010 2 Comments

I decided to start a mid-week post to try to reflect on some crazy, or happy moments that just get you feeling giggly inside. It could be a crazy moment that you just wanted to tear your hair out over at the moment but know has you laughing. I really want to try to reflect the small moments that happen when we least expect them. I know I am posting this a little late and so I plan on keeping it open until Friday this way we can all hop along. Please be sure to grab the linky and if everyone enjoys this we can do it every week.

It was such a long day and my son had a Christmas play today. It was so wonderful!!! I mean spectacular and I cried. Call me a sap if you must but I have gone to many little ditties at his school and he usually is the kid all spaced out standing there while everyone else was singing and dancing. This year I expected nothing less but yet, nothing more either. I was happy to just see him up there.

I am happy to declare that I was really wrong. My son for about a minute and a half, sang out boisterously with a big smile on his face. He was a little off time but he tried and for the first time I saw him join his class in an activity. He was happy and while he had a really hard time standing there and he only sang in the beginning, but he sang, and that is my "Small Treasure Tuesday". Although that is far from a small treasure on my planet, it is an amazing accomplishment.

I needed to share that because it brought so many emotions up in me. I was extremely proud of my son and, although I don't want to sound conceited, I am proud of me as a mom. I am so hard on myself sometimes and this year has been really rough with the diagnosis, self injury, behavioral problems, and learning issues. Today, my son made it all worthwhile. These moments are my rewards of parenting. I love my kids and my ASD son is amazing!!!!

Tuesday, December 14, 2010

An Active Yet Slap in the Face Day

Unknown 12/14/2010 6 Comments

Today was a pretty good day. Charlie was very talkative and active. He did seem to get upset very easy and has been having accidents a lot lately. He just isn't making it to the bathroom and is extremely attached to his beloved pillowcase. The pillowcase was at the point where he only needed it at night but he is bringing it everywhere again.

Charles also had horse therapy today and was very unfocused. His therapist could not keep him on task. He was also parroting a lot. She worked on his counting skills which he has a lot of difficulties with. He cannot count over 5 and sometimes he still messes that up. It is a little frustrating as a mom to know that you work on these skills everyday with him and he still isn't learning them. That make me feel incompetent. I know it isn't really like that but it is a feeling that I do have. You know sort of like the ,"Why my son? What did I do wrong" Just the self pity I tend to fall into occasionally. It happens to the best of us right. Most of the times when I am feeling like this is right after a meeting or testing score. That is when it all just smacks me in the face. Well, th night didn't end there.

He has his moments and at times I do not know how to handle him. It is amazing how other people can approach the child with the same options I would be able to do but it works for them. My son wanted Yogurt for snack tomorrow but I forgot my wallet at home so it was impossible to get him it. We got home and someone offered him crackers with cheese and cereal which he was all for having. I think sometimes I cannot even think straight to offer up other solutions. I would have chosen go home get the wallet and buy the yogurt, but that would not have been reasonable and would have shown my son that screaming like a banshee would get him what he wanted. So, we came home and he was offered some choices which he willingly made a choice and with a smile on his face. It is nice to see that occasionally my son can interact with someone else in a positive manner. I thank those who will take that time when I have seemingly had all I could take. People who can maintain the calm that I happened to lose for the moment.

Saturday, December 11, 2010

Feel Good Friday

Unknown 12/11/2010 2 Comments

I found this great blog hop and figured I would join it!! I know another one? Yes... This one actually requires you to reflect on your week and gives you many ways to accomplish this. I encourage you to attempt this too. Sometimes it is really hard to see the good beyond all the challenges. I dare you to try!!!! The creator is Ericka of The Girl Next Door Grows Up. She has a very bright cheerful blog and some funny posts. She is a mom, like me!!! Except she was smart and stopped at two. LOL... just kidding!!! Stop by her blog and drop her a line!!!
Here are the rules

Step 1:

Pick one of these prompts and write about it on your blog! You can:

Just make a list. List 5 things that made you really happy this week. No matter how bad or boring you think your week was, I bet you can find 5 things.

Write about something that happened to you this week that really made you smile. Was it your child, husband, or maybe a complete stranger did to you?

Write about something that YOU did for someone else that really made them happy or laugh.

Is there something you treasure so much that every single time you look at it, it brings you happiness? Post a pic and tell everyone about it.

Having a hard week and can’t find one good thing about it? Well then, what is your happy place? What do you think of that makes you happy? A past vacation? A childhood memory? We want to know!

Step 2:

Then visit The Girl Next Door Grows Up and join the hop!!! Be sure to comment on other bloggers and give them a smile or a happy thought. Spread the smiles and laugh.

I have chosen to do #1 the list.

Coffee...sorry it makes me really happy..... and my coffee pot broke this week so getting a new one brought great joy.
This week I must say, coffee with codine... at least it eases the cough
My kids smiling... I mean the real smile, not the smile they give you when they are thinking devious thoughts. This week smiles seem to have been rare. So it really made me happy to see them.
My daughter's voice. She sings like an angel and has had quite a few winter concerts lately. It makes me smile to see her doing something that makes her so happy.
Soup Soup and more soup

Thursday, July 19, 2012

Saturday, May 12, 2012

Saturday, January 14, 2012

Monday, May 16, 2011

Monday, March 14, 2011

Thursday, March 3, 2011

Thursday, February 24, 2011

Thursday, February 17, 2011

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Monday, January 31, 2011

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Thursday, January 13, 2011

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Friday, January 7, 2011

Saturday, January 1, 2011

Wednesday, December 29, 2010

Friday, December 24, 2010

Thursday, December 23, 2010

Tuesday, December 14, 2010

Saturday, December 11, 2010

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