Autism As A Whole: family

Showing posts with label family. Show all posts

Tuesday, November 29, 2011

Just a Thought for Pour Your Heart Out

Unknown 11/29/2011 0 Comments

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.

Autism Night Before Christmas

by Cindy Waeltermann

Twas the Night Before Christmas

And all through the house

The creatures were stirring

... Yes, even the mouse

We tried melatonin

And gave a hot bath

But the holiday jitters

They always distract

The children were finally

All nestled in bed

When nightmares of terror

Ran through my OWN head

Did I get the right gift

The right color

And style

Would there be a tantrum

Or even, maybe, a smile?

Our relatives come

But they don’t understand

The pleasure he gets

Just from flapping his hands.

“He needs discipline,” they say

“Just a well-needed smack,

You must learn to parent…”

And on goes the attack

We smile and nod

Because we know deep inside

The argument is moot

Let them all take a side

We know what it’s like

To live with the spectrum

The struggles and triumphs

Achievements, regressions…

But what they don’t know

And what they don’t see

Is the joy that we feel

Over simplicity

He said “hello”

He ate something green!

He told his first lie!

He did not cause a scene!

He peed on the potty

Who cares if he’s ten,

He stopped saying the same thing

Again and again!

Others don't realize

Just how we can cope

How we bravely hang on

A the end of our rope

But what they don’t see

Is the joy we can’t hide

When our children with autism

Make the tiniest stride

We may look at others

Without the problems we face

With jealousy, hatred

Or even distaste,

But what they don’t know

Nor sometimes do we

Is that children with autism

Bring simplicity.

We don’t get excited

Over expensive things

We jump for joy

With the progress work brings

Children with autism

Try hard every day

That they make us proud

More than words can say.

They work even harder

Than you or I

To achieve something small

To reach a star in the sky

So to those who don’t get it

Or can’t get a clue

Take a walk in my shoes

And I’ll assure you

That even 10 minutes

Into the walk

You’ll look at me

With respect, even shock.

You will realize

What it is I go through

And the next time you judge

I can assure you

That you won’t say a thing

You’ll be quiet and learn,

Like the years that I did

When the tables were turned.

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, 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.

Wednesday, February 2, 2011

How Did You Do it?

Unknown 2/02/2011 0 Comments

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

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

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

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

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

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.

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.

Monday, January 24, 2011

Stylus Blogger Award

Unknown 1/24/2011 0 Comments

I was awarded the Stylus Blogger Award by Bella at If This Is Motherhood and Lora at My Beautiful Child Griffin & Autism . I am honored that I was given this award and really love both of these blogs, so I think you should hop over and say hi. I looked at this award and read what it entailed and cringed as I had to tell you 7 things about myself and then pass it along to some other bloggers.

Bella is a mom of two gifted boys who can drive anyone nuts in less than ten minutes. Trust me I hear them in action. She is a devoted Mom who loves her children but must have her coffee to survive the day. I think this is something that we can bond with. We both love and can't love without our coffee. She writes about everything from Poop, no I'm not kidding, to Education and I encourage you to read her lastest post titled, "What Would I know......". This post really expresses some difficulties that most special needs families go through all the time, but it shows that gifted children also have special needs.

Lora is a single mother of a son named Griffin who has Autism. Autism, however does not have him. He is a wonderful young man and his mom loves him to pieces. I can tell by what she writes about him and how she dedicates her life to him. She is a wonderful person herself and copes with struggles of her own as well. She is my inspiration that we can make it through this and alive in the end. LOL... A suggested read would be her post What is Abnormal? This is a wonderful read.

Thank you two for inviting me into your lives and bestowing this wonderful award to me. I guess now I must tell you seven things about myself. This will not be easy but I seriously tried to procrastinate. If I wasn't reading it to my sister knowing that she would correct me I might have tried to post this without it. But, she is listening and yelling for not posting it two weeks ago when she gave it to me. I said I procrastinate right?

Seven Things About Me

I love coffee!!!!!
I enjoy taking pictures of anything!! I could take a picture of a stick, but it would be magnificent(at least I would think so!!).
Melatonin is my best friend!!
I have gained a newfound respect for the makers of coffee!!
I am really bad at listing things about me as I disappeared after I had my children. I am now so and so's Mom.
I love to cook unlike Bella, who burns everything, I can actually cook. I know I burned the ham for Christmas but Bella gave me the wrong damn time, so it's not my fault.LOL
I really love having snuggles in the morning from all my children. It is the best way to wake up!!

OK... I feel I may have totally cheated at this list.
I will try again

My favorite color is blue.
I don't like pizza unless it is white.
I hate the cold so I have no clue why I live in NY. It's my mother's fault. She had me here.
My favorite kind of Tea is mint tea.
I love laying in the grass with the sun beating on my face. The only problem with this scenario is I am allergic to the sun. Go Figure!!!
I really do love coffee!!!!

Yippee...... Finishing this just made me happy. LOL

Now to pass it along...

The Hester Family - Jessica is a devoted mom of twins who shares my love of photography as well.
The Autism Princess - Another mom of a daughter with Autism. She another wonderful mother.
Mommy Brained Madness- Another Mommy Blogger named Mariah who has three children all under the age of three. This includes a set of twins. I admire her as well.
Listen To My Words With Your Heart - This blog is so wonderful for me to read and if you live with a child with Apraxia, it is helpful!!
I'm Screaming Inside- this is a new blogger who is just starting to write a lot. I think she just needs to break out of her box and she will be wonderful!! I hope you visit her and leave some encouragement and comments.
Seven YuckMouths And Autism - a mother of seven children and two of them are special needs children. One with ASD and another possibly ADHD.

Saturday, January 22, 2011

A Little Resolve

Unknown 1/22/2011 0 Comments

Well, to ease my frustration just a little the school board called. I am not entirely sure if this means anything but, we shall wait and see. I explained, yet again, what my concerns and issues were and they ~~pacified~~ listened to me while expressing their understanding my concerns. I had already written out my letter regarding the problems I was encountering. I still have decided to send the letter out. Due to all the snow issues it is going in the mail on Monday. Actually I think I will drop them off at the district office and request that they be stamped as received. I have kept copies of the scripts from the pediatrician and the letter to ensure that there is a paper trail.

The school board stated that they were sending an email to the OT at my son's school demanding that he receive therapy immediately which is a step forward. While the Occupational therapist has been taking some time for Buddy, and I told the board this, he is not receiving the therapy that his 504 plan entails. The lady I spoke with said she didn't care that the therapist was helping him, she wanted them to abide by his plan which would give him individualized one on one OT. This made me smile. I felt like maybe, and I may be leaping into the dark abyss, I was not fighting this alone. I think I may have someone backing me that has authority.

I also took the time to explain the custody agreement and how we make this Co- Parenting work. While Buddy's father is good at some things, when it comes to advocacy and school meetings, I am more aware and I deal with those issues. I am not saying that he isn't trying to be involved in those areas but he doesn't understand them. I might add that sometimes I feel as if I am really going easy on him and his lack of participation regarding this.

He himself was totally unaware of the school problems. You would think that Buddy's report card, that was NEVER mailed to me, would reflect these difficulties. The teacher stated that she spoke to him several times on the phone, but he does not remember this. I am now changing the way I deal with it all and while my day is overflowing with the responsibilities for my youngest son, I am now taking full responsibilities for my oldest son as well. This might seem confusing as it really has always been my job as his mother.

Buddy and Chipmunk live with their Dad due to some issues with my youngest's father. I wanted to bring them back to my home but with all the issues surrounding Chucky it just didn't seem fair. Chucky was very aggressive as he was entirely non-verbal , so we decided to maintain their schools in his district and have joint custody. Buddy would visit and leave my house with bruises and terrorized by his brother. This has seemed to work although I miss having my babies home with me all the time. When the children lived with me, I was responsible for all school issues. He didn't attend the meetings and he was totally uninvolved with the early intervention Buddy was receiving. Thia didn't concern or bother me because they were always with me and it was quite evident what they needed. I assumed that because they lived primarily with me it was my sole responsibility to ensure their needs were met.

I think I got so caught up in Chucky's needs that are right in my face that I tried to allow Buddy's father to take some of the responsibility that I was always liable for. I see now that that may not have been the best thing to do. When it comes down to it, I guess in a round about way I am responsible for the lack of communication with the school. I could have been calling them and pushing for his needs. Instead I was communicating with their father thinking that everything was fine, but knowing how poorly he is with any form of advocating. I miss being as involved as I was and I am going to change that. I have called my children's teachers and requested to speak to them. I will make this work for the better. I will turn this around. It is my hope that maybe through observation he may learn how to do this and pick up a few skills, but in the end, I have to advocate for my children. I have to ensure they get what they need. I am MOM.

Wednesday, January 19, 2011

Stop FUCKING With Me!!!!!

Unknown 1/19/2011 1 Comments

I think this post is inspired by the fact that while it is beautiful outside I am totally sick of the snow, ice, rain, and below freezing temps. Please bring back Spring, oh and let there be school again soon.

I have things to do too ya know. Things like housework that will actually remain clean and dishes that will stay clean for at least an hour. I like seeing the living room floor and I enjoy having at least 5 minutes without hearing the words, "Mommy I want..." The children have not been in school since last Friday and well,

We are looking at another storm that is due to hit us on Friday.

Grrr..... I wish the snow would just STOP FUCKING WITH ME. Not only do I have to deal with the children being home, but hopefully tomorrow they will go to school and then I have the transition to school with my son. He doesn't do well with change so.... It should be fun.

I can expect to have to dress a squiggly child as he is kicking me refusing to help. I expect to have to carry a screaming and kicking child out the door and to have to lift him onto the bus. We won't mention the traffic we will be holding up during this ordeal or the fact that his dry clothes will be wet before he gets to school because undoubtedly he will wiggle out of my arms to throw himself onto the ground. Boy, I have a lot to look forward to tomorrow. But, on the flip side, although I will probably miss my children, it will be quiet in my house and I can sweep the floor without a child running through my pile. I can vacuum his room without him screaming because of the noise.

Please.... yes, I'm begging... let there be school!!!

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.

Wednesday, January 12, 2011

What's On Your Mind Wednesday

Unknown 1/12/2011 0 Comments

My son is sick....:( he says his belly and forehead hurts.
He doesn't want me to touch him- That is so hard.
Kids are home from school...the damn snow doesn't like me.
The school district sucks
Co-Parenting is only Co-Parenting when it involves both parents working together
Worrying about my oldest son and what he is going through
My daughter is almost a teenager and not only does it make me feel old but it is really scary.
Thinking about how I could grow an extra set of ears and arms.
Well......there is a lot on my mind but I think you are probably bored already.
Thinking about how wonderful my blogging family has been with the supporting comments and advice.
Wait one more for ya... Since I am on the phone with If This Is Motherhood, unfortunately bowel movements in adults are on my mind as well. Thanks a lot. Just another highlight to my wonderful begining of a new year.

FLIPPING THEIR LIDS, by Earl R. Stonebridge

Image by roberthuffstutter via Flickr

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.

Thursday, January 6, 2011

Family Rejections

Unknown 1/06/2011 0 Comments

My four angels are all equal and special to me. The oldest was an only child for five years and then I gave her a sister. Her sister was the easiest child I have ever had. Maybe I should have stopped at two is what I think in my down in the dump moments. But, then I ponder this.... What if I didn't have to go through the struggles I have gone through? What if I didn't have to deal with Early intervention. What would my life be without my wonderful boys?

I can attest that it would not be what it is now. I would not have the undersxtanding of other parents that are going through a really rough time in the store as mentioned in Mid Life Army Wife's post. I may have been the parent that was looking thinking OMG... get control. That was before I had awareness. That could have been me before I had experienced this firsthand. I think this is part of the mindset that family members go through. I am not saying it is right but, I can remember how I myself felt about my son's behavior before I could figure out what he was dealing with. I remember thinking that I wasn't parenting him right and he was out of control. I truly thought he hated me as a very small child.

I am not saying that family is right by rejecting our children. It actually makes me sad. My mother has a very hard time with my son. She doesn't even really try to connect with him anymore. My son will not openly invite you to play with him and he may not come up and be warm and inviting when you come over, honestly he might not even realize you are there, but that doesn't mean he doesn't want anything to do with you. He does not have the social skills to interact and he anticipates that if you want him you will go to him. I cry when I think about the wonderful little man that my mother has chosen not to embrace. He is strong willed and very smart. He has a lot of challenges every day that neuro-typical children don't have to overcome but, slowly he is doing it. In the end he has all of the people who have stood behind him and pushed him to keep going to thank. It is unfortunate that she will not be one of those people.

I must be the devils advocate as well though. If you approached someone and they didn't seem the least bit interested would you continuously attempt to connect or would you find yourself backing away? In the beginning it was all behavioral issues that my mother couldn't deal with but now it goes so much deeper. It hurts because we were able to talk a lot when I was younger but now I feel an anger. Anger because my son is tossed to the side only to be mentioned when I speak of him and even then it is a brief conversation. Maybe it is too much for her to handle that her Grandson is not "Perfect", but what is perfect? He is perfect in my eyes. I try to ignore all parental guidance that my mother rarely offers. Unless you can walk in my shoes, don't tell me how to do it.

On a positive note, my sister Melissa has been amazing with Chucky Cheese. She will come over and engross herself with him. Even when he doesn't seem receptive , which you can read about here , she still trys. I love this interaction and so does he. I know that there are times that he catches her off guard and she feels a little hurt, but she pulls it together and remembers that he isn't trying to hurt her. I love her for this. She is an amazing Auntie and he is lucky to have her around. I chose to focus on this as well as all the wonderful "outsiders", that I really don't consider outsiders. They are more like my family as well. They give me the strength, courage, and hope to move forward. Anger holds you back.

This post was inspired by: http://spectrummentor.com/2011/01/06/when-your-family-members-reject-your-child-on-the-autism-spectrum/

Wednesday, January 5, 2011

So Yelling is Out…umm..What can I do?

Unknown 1/05/2011 1 Comments

I read an article today titled , I Have Asked You A Hundred Times!. It really hit home. I have been having a torturous time with my tween. She is just lazy, ridiculously lazy. It drives me insane.
I used to have her take a shower in the morning but she was never ready when the bus came and would be leaving with wet un-brushed hair. I now insist that she take a shower at night but, it is still a battle. Do your tweens argue about a shower? I mean you would think they would want to look their best right? I am so confused, so I decided to take the natural consequence approach.

I asked her to take a shower and if she chose not to that was her choice. I told her that I would not take her anywhere if she was not showered. Do you know the girl didn’t shower for almost a week. She didn’t care that I wouldn’t let her sit on the couch or at the table during meals. She didn’t even get the point when one of her friends told her she smelled.

The end of that was when the guidance teacher called me telling me that she had a smell on her. I explained the issue to the counselor and she assured me that this is a normal phase for tweens. Although she said it usually goes on with boys. I explained how I tried to allow her peers to influence her and it didn’t work. So, now I feel as if I have to be on top of it. I will not remind her anymore. It is now that she takes a shower by 7:30 or she goes to bed at 8:30 instead of 9:30. I think that is reasonable.

My sister recently wrote a post titled The Mom (Super Human) in Me -VS- The Human in Me. I encourage you to read it cause it is a great post. It really hit home for me. I too struggle everyday with my human form vs. my Mom form. Do You struggle with this too? Do you find yourself fighting the urge to say,”That was a stupid thing to do?” when your child trips over the shoe they left in the middle of the floor instead of asking if they were ok? It may sound mean but come on, I know she has brains and I wish she would use them.

I am only human and I am not trying to be mean. I love her so much but the arguing has got to stop. I hate yelling at her and I find myself so frustrated with her actions, or lack of actions that I cannot enjoy her presence. Does that make me a horrible mother? She wants me to listen to her sing and while I would love that in the back of my mind all I can think about is the fact that I want her to clean her room and take a shower.

I can take a little of the blame for her behavior. I totally cringe in saying that when the going gets tough and I don’t want to fight with her, Mom gets going. Off to do something else, leaving her to do, not what I am requesting her to do, but what she chooses to do. No, I don’t let her roam the streets, not that she would get far cause we live in the sticks, and I will not allow her to go out. Well, maybe I do … *cringe*. There are times that I am so annoyed and I justify her going out as we both need breathing room. This is just one more excuse.

I challenge myself to be more consistent but not to yell, ummm… or scream. It has to be possible, Right???? So, I shall state clearly what I expect of her and take the things that mean the most when she selectively goes deaf. LOL! Sometimes I find it so hard to try to get control of the situation because I have a special needs son. He takes up so much of my day and somehow… when things get tense with Krystal or I am trying to draw the line, in chimes Chucky and he needs me NOW!!!

How do other moms handle this? I think I might go crazy. I used to think that after you have three children, you can add more and it didn’t effect anything. For instance my “wife” as I call her, used to ask me to babysit “her” two girls, which are really mine, but she would always ask,”Are you gonna be ok? That is a lot of kids.” At that point I would respond with,”Are you kidding? After three extras don’t count. They all occupy themselves and whatever bickering could occur can’t be any worse than with three.” She always thought I was crazy, but now….. forget it. I cannot take on more than one more child.

My maximum child occupancy has changed from unlimited to five. I find myself doing Math and really scheduling things. If Chucky goes to his dad’s house I can have at least two kids over but.. if he is home the parents must stay. I do it at birthday parties too… I am such a wonderful host..LOL… I will see how many moms or dads can stay through the party and lend a hand. Most of them are well aware of the situation and are more than willing to help.

This overwhelming barrier of motherhood involving special needs lets my daughter ignore my requests and since my brain cells died after I had Charlie, I can’t remember anything. Do you have the same problem? How do you juggle it?

Tuesday, January 4, 2011

Snow

Unknown 1/04/2011 0 Comments

We tried doing this activity with him the other day and it ended in a huge melt down. It went wonderful yesterday and he was interacting with his sister.

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.

Monday, December 27, 2010

How Long Is Too Long - Magic Marker Monday

Unknown 12/27/2010 6 Comments

I chose to participate in this blog hop because I am one of those Mom's who never, ever, ever, wants to throw anything out!! If my child scribbled on it, it must be kept!! Although through the years I have eased a little. I realized that if I kept going at that rate my whole house would be boxes full to the brim of artwork from my kids.

Someone suggested to me to take pictures of them so I am trying that approach. I do take a lot of pictures though which will mean purchasing new hard drive at least twice a year. I can't help that it is an obsession!! I went through all the artwork and took pictures. It still took me two weeks to finally throw the originals away. It felt sinful.

But, with four children and lots of schoolwork, I have to compromise. So, goodbye paper world and hello digital. I shall try, very hard to capture them all on camera and sort through the originals, only keeping the ones that are ...... ummm... which ones can I keep? This is hard work man. But, I need to eliminate clutter. Ummm.... Hand prints are a must keep, any hand crafted 3-D creations within reason are a must keep. Ok, I think I will stop at that. Wish me luck. I will need it.

My children on the other hand are not thrilled with this idea. They feel that I should keep everything. When I say everything I am referring to every piece of paper they bring home. How many of your children want to keep the old work books from last year? I mean they never want to throw them out. Homework too... they have to keep it all. Where did this come from? It is the abyss of school taking over my house. I have obtained an accordian folder for each of my children. Each year they can choose what they want to keep, but it must fit in one pocket of the folder. Do you know what I ended up with then? I went into my daughters bedroom where I found stacks of papers shoved in her closet. Oh My!!!!

Here is a Ginger Bread House that my children made this year.

I like these crafts cause they get eaten and don't continually take up space.

At least they weren't meant to. I have a confession. In my closet I have a ginger bread house. Yes, you heard me right and I wonder where my kids get it. This Ginger Bread house was given to me last year by my son so it is now a year old. It doesn't look too bad either although I wouldn't suggest opening it. We kept it on display last year and I didn't have the heart to eat it or toss it so it went in the closet where it shall return again this year. I know I said I wanted to reduce clutter and I know how bad it must be to keep a food product for this long. But, it's special and a picture just doesn't cut it.

This House is a year old!! Doesn't look too bad though eh?