Monday, April 11, 2011

Autism Walk

Yesterday We bundled up our 3 little ones , packed a diaper bag with snacks, diapers, extra clothes, and drinks and loaded them in the van to head  up to Rhienbeck NY to participate in the 10th annual Autism Walk and Expo which ran from 9-1pm. It raises money for Autism in the Hudson Valley and there are various agencies and sponsors  there who you can get information from and  ask brief questions. The day was breezy and cold but still clear and a good day for our walk to happen.

There was also children activities such as a llama , Elmo, bouncy objects, and child sized drum sets where the kids could go and bang away to their hearts content! Music was provided for walkers to listen to as they made their way around the dirt track that consisted of the walk for autism. There were teams , individuals, families, business you name it walking carrying signs and showing love and support. It was very touching to see all that came out to raise money and awareness for this cause.

As you made your way around the track yellow sign were posted that would inform you about facts, information and anything doing with Autism. We did the track once time as one of us was holding the hand of each twin and the other was holding William's hand and the diaper bag. After we were done we went over the where there was a karate demonstration taking place by children who were breaking boards and jumping through flaming hoops, very exciting!!

The Children played with a sand table,climbed up steep inflatable stairs and  went down the  inflatable slide, bounced up and down in a inflatable bouncy house, saw elmo and got stickers, and even saw a Llama!

I would have to say the hit of the day was the small child sized drum sets that were set up for the kids that were free for them to play with and make as much noise as they wanted to which they thoroughly enjoyed. No body shhing them or telling them not to do anything just free play and fun which produced a lot of giggling among all the children as the parents watched and told them how well they played and how wonderful it sounded all the while with small smiles upon their faces. 

One of the great things about this event is the way I feel at it and it's if William is having a hard time or has a melt down there no one is going to judge , give condescending  looks, or think he is just a "bad" kid. They know he is Autistic and is just having a bad moment and that he is not a bad child! What a relief to be able to attend a event and fit in and not be on edge that something is going to happen. If something happens so what , everyone else has been there at some point too! You are among your peers there who are fellow parents, loved ones, and professionals who live ,work or love an Autistic somebody. The stories of hope and support freely shared among strangers is wonderful and inspiring and really makes a happiness fill you inside. 

After the kids were getting restless and us parents had enough we ushered them into the van once again with the promise of french fries and other goodies and off we went back to our home. Silence rang out through the car as 3 worn out little children dozed in their car seats and my husband and I enjoyed the silence on our journey home. We broke that peaceful quite only once to look at each other with tired eyes and say "I love you and I had a nice day with you and the kids today" Then once again we rode home but with a small smile of satisfaction on our faces knowing we did something good for not only our children but for our family as well that day.

Friday, April 8, 2011

How Does Autism Effect Parents

So much is discussed about how Autism effects the child and the various signs but I think sometimes the parents are left out of what happens to them after the child is diagnosed so I will share with you how it effected me.

When we found out about William being diagnosed I felt like my heart was ripped out of my chest and I cried , I raged, I asked why me? What did I do that my child had to suffer with something there was no cure for? Am I a bad mother? After this there was some time for a while it was sinking into my brain and settling into my soul that I had an autistic child and this was my, my husband's and my families life now. 

I then just stopped caring , caring about me , how clean my house was, if the laundry got done, and other little chores that "good" mom's do all day while their husbands are at work. Then I went into the opposite direction and was "robot" mom and went through the motions of doing wash , mopping floors , cooking dinner and just taking care of all these little things still not caring about Dana.

Before I knew it time had went by and several numbers on the scale as well and it soon came upon me that I no longer fit into anything in my closet and I had gained weight and no longer looked or felt like myself anymore and that I had been having a huge pity party for myself. Why shouldn't I? I was the mother of an Autistic child and I was suffering too wasn't I?

It was time to stop the pity party and get me back and start caring about myself again as even though I had done all the right things by my family and William I wasn't doing the right things by myself and I had gotten into a depression and uncaring cycle of abuse upon myself. Crying for reasons unknown to anyone, feeling tired all the time, wearing sweat pants and large sweat shirts everyday all day long. These were not the acts of an emotionally stable person so I did what most people I went to therapy. 
Therapy is good at times you can express yourself , talk to a a neutral third party, and feel better after your 30-45 minutes are over. You walk out refreshed and feeling better like a weight is lifted off your chest , there is a spring back in your step and sometimes you can even catch yourself whistling a tune. Until you walk back into the nightmare that is your life and then it is gone as fast as it came to you.

So , back at square one I gave up therapy as it helped until I got home and William was throwing a fit, the twins were crying, the teens needed dinner , and the husband wanted to know whatever.I floated along for a while again until one day my "fat" pants were getting tight on me, and I got angry! Angry at myself, at Autism for coming into our lives , and at whatever made me this fat . Right then and there I vowed to lose this Autism blubber and get back to me again. 

I am happy to report at this posting I have lost 22lbs and am 10lbs away from where I was before Autism barged down my down, sat on my couch , put its feet up and decided to stay awhile.

This is how Autism effected me and me alone and everyone if different and it effects everyone when they find out  their child is Autistic in different ways. Maybe people will see this as weak,maybe some will see it as stupid or self pitying. I see it as a strong women who was lost for a while but is strong enough to see it and fought to come back.

Friday, April 1, 2011

Autism Awareness Month is April

April is Autism Awareness month
1 in every 110 are autistic
60 new cases are found every day
It is more common in boys then girls

this is William , he is autistic , he is a loving little boy and he is cherrished by his family.

Thursday, March 31, 2011

My Son,My Hero

Both of my sons have a really great bunch of kids they hang out with , kids some of which I have gotten to know and care about more than others by them sleeping, eating  and just hanging out over our house  around with the older boys and in the complete chaos that involves this household with all the little guys on a daily basis.

Last year my son Johnny sent me a text message in the middle of the day asking me to come pick him up from school as he didn't want to be there anymore as he recieved some bad news about a friend of his reguarding some medical tests that this friend was waiting on. For Johnny to ask me this I knew it had to be serious so I told him I would call the attendants office and tell them he had a Dr. appointment that I forgot to write a note for and he could tell me about what was going on when I picked him up.

I drove to the school not knowing what was coming or what Johnny was going to tell me but hoped for the best and expected the worst, and walked into the office where Johnny was waiting for me, signed him out and off we went to the parking lot.

Outside he broke into heart wrenching sobs and explained to me what was going on, I am not getting into what was wrong with this child as that is not my story to tell my story is about Johnny how he handled this and what my reaction to this was .

My heart broke for my son , the pain, fear and hopelessness he felt for a friend who was going through a hard time and for the family of this kid and what they must face for their loved one as well. I, being just a mom could only relate to Johnny on such a level and in this situation I felt he needed a man to talk to and with Billy being at work and only having a cell phone available would not work in this situation. There is nothing worse than spilling your heart out to someone only to hear them say "What? Sorry I am in a bad area and I can't hear you can you repeat that?" Not Billy's fault at all it is just the way it is and I knew once he came home he of course would be the man Johnny could turn to if he needed that, but I felt right now he needed to talk to someone. So like any good Mother I called the next best thing, my father.

I explained the situation to my father and he of course wanted to talk to him from a "Man's" point of view so I went upstairs and gave Johnny the phone so he could talk to him in privacy without his mom watching and about 15-20 minutes later he came down , handed me the phone and I saw he looked a little less worried about his friend and told me he was going out for a little bit. I talked to my dad and thanked him and chatted for a little bit and then hung up glad I could count on him in times like these.

In the weeks that followed I saw my son be a really good friend, a caring and concerned friend and someone you could really count on and trust and it made me proud to see what kind of man he was turning into.A man not afraid to show his emotions when he was hurting, not afraid to ask for help, and one that included his family in his thoughts and feelings. I think sometimes as men are growing up sometimes they are tought that to cry,to show fear, to show hurt, or any emotion is considered weak and unmanly. I think to show emotions and ask for help when it is needed is the stronger thing to do as you are showing that you too are Venerable and are after all just a human, a person who needs other people too.

This child had a hard time of it and I prayed for them and their family everyday that god would make them better, give the family the strength they needed and the support and love that would help see them through and I am happy to report that they are all doing good and god willing they will be in good health for a long, long time.

The thing though that really struck me, and made my son my hero is during this child's course of treatment my son and all his friends got together on a Saturday or a Sunday afternoon and as a sign of friendship, support ,love and in my opinion heroic behavior they took turns shaving each others heads so this child wouldn't be alone. When he told me they were doing this my heart stopped and I actually cried from the thought of all these kids so full of love for one another that as a group they would do this together. It also showed me a side of him that had a situation like this not come up I would never have seen in him. I am so proud of him and his actions and how he loved and supported his friend during this most difficult time in their life. What a wonderful person he is becoming , what a great man he is turning into.

My son, turned into my hero on that day with his freshly shaved  head and his broad silly grin on a cold winter day in 2010 .

Wednesday, March 30, 2011

The Neurologist - The Start of Autism

When William was 18 months old he was a chubby happy baby and doing everything on time and we thought he was going to talk early but around 2 - 2/12 he stopped developing and then started regressing and we couldn't understand why. He was in early intervention and was getting services such as speech, SEIT, and OT and then it was suggested to us that we  bring him into a neurologist office to find out about the significant delays that he was experiencing, which froze my heart and chilled me to the bone. I asked his therapist what we were dealing with and she said Autism. The word rang out like a booming cannon.

Going into the neurologist office we somewhat expected what we were going to get but to see my child cowar on the floor from fright from the doctor was heartbreaking to myself and his father. He screamed, cried, and threw one of the worst tantrums I had ever seen him do. We filled out a circle the answer type of profile and the doctor looked it over and and then confirmed our worst fears Autism mild - moderate. The Doctor then just sent us on our way, here your sons autistic have a nice day, bye. No further instructions, no little hand out nothing .

We went home with our son and our thoughts and I cried , Billy cried and we questioned why us, why our son? What did we do that he had to suffer in this Autism nightmare?

Autism is more common among boys then girls , 1 in 110 children are autistic, and I think the number is there are 60 new cases a day of Autistic children. This is a mind blowing fact to me and its funny because before William I was one of those mothers who would see a child in the store and if they were throwing a fit , being loud , or any other attention grabing behavior I would cluck to myself oh that mother needs to take charge with that child, now sadly I have other thoughts such as  maybe they are having a bad day, the poor parent and what they must be feeling, and that poor child maybe they are over stimulated and this is the only way they know to react.

I have seen william locked in this Autistic world where something would be wrong a belly ache, a headache, something small and because of his lack of verbal skills he couldn't express this. Something simple such as giving him a bath will result in him yelling screaming, and throwing a fit that would include him hitting himself in the head , running at walls and violently attacking my husband. I have seen him siblings suffer as a result of his Autism the twins with learning delay's , the teens not getting as much attention as they need, and my husband and myself putting ourselves last to service all these children's therapist, appointments, service needs, and IEP meetings it is a never ending thankless cycle of work to keep onto of everything for them. Something that no one who doesnt have a child on the ASD spectrum or a learning delayed child in their family would understand.

I have also seen so much love come from this little boy, his smile melts my heart and lights up the room. I have seen him bring a 200+ lb man to his knees with love and devotion for this child and this family and without my husband I do not think I could do this. He is an excellent father, husband and man. The rate of divorced parents with an Autistic child are 85% and that scares me to death but I can understand why as the stress alone is terrible.
My older sons are the best big brothers to their siblings I could ask for and I am so proud of them and they make the burden easier as well and I am eternally grateful that I am their mother and they are my children.

They say god doesnt give you what you cant handel and he must think I have very broad shoulders as he gave me alot in this life to bear. People say how do you do it? I do it because I must, it is my job , I am a mother and that is part of having children is to be there for all of them no matter what.
I love my family and I love my husband and I hope this blog will make someone who is in a situation like ours feel like they are not alone and they have a friend out here

My kids like to share , germs not toys

Well after I wrote my first blog yesterday shortly after I got a call from William's school to come get him as he was throwing up. Amanda (one of the twins) had it Friday and with no other sick kids in sight I thought we were safe by Monday when I sent them off to school, guess I was wrong.

Today William stayed home bundled up in his PJ'S and watching a movie & off to drop the twins at school I went while my 16 year old watched William. When I got back I decided to make the older guys brownies because with teenagers it is all about food with them ha ha.

Ring ring went the phone at 10:30 and as I saw on the caller ID that it was the twins nursery school I knew it couldn't be good. Dylan had a blow out (diaper couldn't hold the contents) so I had to pick him up from school. Oh boy guess they all shared this germ that was traveling about the household.

The problem with sick little guys is the care they require, they want to sit want their dinner at the end of the day, their clothes washed in washing machine , and don't quite understand why Mom cant do that kind of stuff. Which is why it is hard to have children on both ends ofwith them , stroke their hair and do the mom things with them that is fine but the older guys (16 & 19) still  the timeline , sure you can call take out to appease the dinner aspect but that can be costly especially when you have 5 children, and one hungry husband.

This mom is pretty smart though when I have been making my dinners lately I have been making more than enough and freezing part of the dinners so the days like today or if I got sick or couldn't or didn't want to cook I just take something out of the freezer and dinner is done and it is still a home made dinner at that!

I am trying to be smarter as I get older, and I do try hard to make sure that the older boys feel loved and included in things as well so don't feel like everything is about William or the twins. Even though they are in their late teens they still need their mommy and the need to feel special is something that doesn't die with age as we get older but may be something we just don't express as loudly as a small child does at times.

I am hoping by the next post I can express good health in the household , and that there is nothing but funny, or happiness to report!

have a good day

Tuesday, March 29, 2011

First Post

I am starting this blog as a way for others who have a child with Autism or anything similar to know they are not alone and maybe my crazy life can help them, bring them a smile on a hard day or anything to help them through. I am just a mom,I am not a writer, a special needs teacher or anything that would qualify me to be an expert in anything. I am a mom of a son who is 5 with Autism, Twins with learning delays and 2 teen sons. Yes that is 5 children and it is a crazy life with tears, anger, joy and everything that goes along with it. It will be the truth as I see it and live it every day this I can promise. I am hoping it will be helpful to some and mostly to me as an outlet to help me as well. I hope you enjoy reading it.

William Had a Good Day

Monday, after a weekend of dealing with 3 children who had a tummy bug all weekend long I was so ready for everyone to go back to school and enjoy a Monday in the house all alone but its funny sometimes things just don't go that smoothly.

As I got William ready for school so he could catch his bus at 8 That would bring him to his special school where he would receive his services, play with his friends, and learn I could see he was a little off. William has Autism and he had a 3 day weekend due to a Superintendent's conference on Friday and he was fighting going back to school. I kissed him , and hugged him , and told him how much I loved him to no advail when we made the short walk out to the bus at 8 am he was crying with big fat tear drops dripping down his cheeks. I went onto the bus with him and watched as they buckled him into his seat and my heart broke in two as I assured him he was going to have fun and as I walked away and waved his anger at being left on the bus without me showed. He banged on the window and yelled and I turned to walk inside my house with tears rolling down my own cheeks at this point.

I got the twins ready for school they are 3 1/2 and were happy and ready to go as they missed their school and friends. The twins are learning and speech delayed and are behind where they are suppose to be at their age. The twins are Amanda and Dylan , Amanda who chats all the time and Dylan who is quite and a bit shy but still friendly.

Then I woke my eldest up for his morning college class and found to my surprise he was already awake and wrapped up in his own thoughts to pay much attention to me when I tried to tell him about William and what happened this morning.

I called William's school as is typical for me when he is having a hard morning to give them a heads up on how he was coming in on the bus so they could be prepared for him and then went about my morning duties to get the twins ready for school all the while thinking of William and that tear stained face looking out of the window at me.

I called the school back to find out how he was doing and they told me he calmed down on the bus and was happy and smiling when he walking in this morning, relieved I went about loading the twins in the van and driving the short trip to their school, dropping them off, & doing the "Mom" duties the running a household of 5 children and 2 adults required all the while William on my mind and wondering what he was doing, and was he having a good day?

At 2pm I greeted William's bus and he jumped off happy and smiling and we walked inside and I got him settled down. I dug through his backpack and looked for the one thing that would answer all my questions about him for the day, his communications book. It was a black and white marble book that the teacher wrote in to let me know if they needed anything for him and how his day went and I wrote in it any questions or concerns I may have about William.

William had therpy today and he enjoyed a walk outside today and he ate well at lunch time , William had a good day today.

Those 4 words made my heart sing with joy, it was better then anything in the whole world as I weight lifed off my chest that had been there all morning long when I read that last sentence.

William Had A Good Day