I Love You

Sam has a new stim.
I see him doing it almost all the time. In places that we are quiet (church, stores, and school) he makes it a soft breathy sound. When he is alone or outside he does it and he is loud. It's constant. When he is watching TV or playing video games. he's very good at being discreet around his friends. I worry about what that kind of control might cost him. I worry that he is afraid to be himself and be OK.

I wish my boy had a world that understood him. Where people didn't say things like "see He showed empathy , he can't be autistic" or " he seems fine to me"
I want him to be in a place that people defend him and love him. I am grateful because our team does that for him. The kids in his class don't understand. They tease him for his weird behaviors, foods, and clothes choices. They tease him at lunch for his allergies and get mad that they cannot bring the snacks they want to.
But, Our TEAM stands up for him. The school Nurse goes in and talks to the kids about how serious allergies are to protect Sam and kids like him. His principle cheers him on when he makes the right choice. She returns my calls every time.

it's because of these people  working with Sam every day that I think we hit this next milestone ....


Those of you that read know how hard it is for Sam to say he loves me will understand how awesome this new development is.

He keeps repeating it to me,over and over again.
He sounds like he means it.
He hugs me every time he says it

In light of the chaos here I am amazed. It almost makes up for his new stim of sudden yelling in short bursts...

Kids

I am so grateful my kids all get along so well. The older kids like each other (most of the time) Nate and Grace are best of friends. Sammy adores Grace and is looking forward to the new baby coming in just a few short weeks. (By the way if you tried to get to my guessing came from this post, you need to put "squishguessgame in the left hand side of the page where it asks if you have been invited to play. So far we only have 3 entries other than mine.)





today Grace walked over to Sam and wrapped her little arms around him and told him she loved him. He smiled and ruffled her hair. It was so sweet. So many families spend their time fighting, I am grateful mine do not. It isn't always roses. Nate figured out how to really annoy Sam and set him off. Sam goes after Nate sometimes too.  They are after all human children.

Humble

January 10, 2013

I woke up and came downstairs today to a sink full of dishes and a full dishwasher. A clear sign my oldest boy had chosen to skip his chores. It's a known pet peeve of mine and it took everything I had to not come unglued. I may or may not have even burst into tears at least once, to which Grace responded by kissing me.

Sam has been spewing negativity in wild tangents that go on for 15-20 minutes at a time. It really wears on you after while.

II have been listening to my Dale Thomas CD and so all morning I kept hearing "it's your choice" in my head. Now I am not so sure of how much is really my choice and how much is simple bio chemistry that creates OCD. I took a bunch of deep breaths and relaxed and decided to just start at the beginning and go from there. I got the kitchen cleaned up and finally had my cup of coffee at 10am.  Needless to say it wasn't the best morning.

I didn't feel very blessed. I just felt tired and frustrated. I felt like once again I came up short because I should be able to somehow do it all, even 8 months pregnant. I somehow have this ridiculous idea that I should be Donna Reed. Grace was cranky and I was edgy and I kept trying to make the choice to keep it together and count my blessings.
I didn't want to write about feeling gratitude or feeling blessed. I wanted to wallow.

then I saw THIS post on Facebook and my perspective changed. Here I was feeling sorry for myself over a sink full of dishes and a facebook friend had lost her son. Her 8 year old son. He suffered through debilitating pain and illness for way longer than anyone should ever have to, never mind a child.

So today I am grateful that I can hug and kiss all my kids even when they don't do their chores, Even when they leave their stuff on the floor, Even when they roll their eyes and talk back because my kids are all still here.  We all know it can change in a moment.

If you can, take a moment and say a prayer for Kyle's family.

Concussed

January 9, 2013

Our oldest boy wrestles and I know I have mentioned before how very good at it he is. It's a rough sport for sure and injuries happen. We knew that going in.

Tyler is an Aspie and has learned a ton of great social coping skills  to the point where most people have no idea. He hides behind humor and silliness and it is one of the MANY things I love about that boy. As my oldest son we have a special kind of bond and we are very close. Ty tells me just about everything and he comes to me for advice. He is 17 and such a blessing to our family. He connects with Sammy in a way no one else can. My two spectrum boys really do get each other.

Tyler was at a meet this weekend and was dumped on his head, hard. He was rushed to the local hospital on a spine board complete with a neck brace. The trainer began to tell him they thought he might have broken his neck. I wasn't there, the meet was 2.5 hours away and Dan had to work. He must have been terrified.

But he is OK. He does have a concussion and he is off the mat for AT LEAST 14 days post headache, but he should be able to wrestle for sectionals. Right now we just want to protect him enough to get him there. Last year he broke his collar bone 2 weeks before sectionals and it ended his most promising season. He won't allow that to happen again and he is terrified it will.

I am so grateful for his coaches that make sure the kids are safe. We have an incredible staff and they all love the kids. Tyler has learned so much on the mat. One of the coaches is now Sam's coach too.

Someone asked how I can watch Tyler wrestle. It's simple. When your child has a passion for something, you watch. You endure crazy early morning rides to Dighton, PB&J for lunch each Saturday, cold toes, and aching backs from bleachers. You go and scream yourself hoarse, call out moves, and pray at the sidelines, because when your child has a passion, you support it even when you don't want to. This is the last sport I would have picked, but Tyler picked it and he excels at it. So I support him in any way I can.

I am blessed he wasn't seriously hurt  and that he can finish out his season chasing his dream and fulfilling his passion.

Almost time...

It's almost Christmas and we have been so busy getting things done, lots of knitting and baking, some crafting and sewing, and a whole lot of eating too.

We celebrated Dan's family Christmas last weekend while his mother was here from Florida. I made tutus for the little girls and capes for the little boys,caramel for the teens and hats for some of the other teens. One of the kids even received a Grover hat! The littlest family member received a beautiful knitted cap.

Grace got quite a few baby dolls which have now become her very best friends, some very sweet clothes, and a tea set. We have had a tea party every day since. Nathaniel and Sam got Legos and cool remote cars, markers, tool belts and a house to color. The children were all very pleased.

totally ready to party

our morning getting out the door was difficult to say the least. All our gifts were ready to go, the food was waiting to go in the car, and true to form Sam was beside himself. Social stories did not seem to help him this time like last year and he just could not pull it together. A quick text to my MIL to let her know we may not be going and to please come get the gifts for the kids. When she showed up we had just finished restraining Sammy, he had no shoes on, his face was puffy, and I was in tears. We couldn't find Sam's shoes anywhere. a hour of looking resulted in absolutely nothing more than being totally frustrated.

I made an executive decision to jump ship. I sent him with my MIL and older son. He put on my crocks and he went.
he spent the day in the basement , alone. He played alone the entire time the party as going on (after I made sure he was not going to get hurt or escape). He did come up to eat. He did not want to come up for presents and at one point even told Daniel he just didn't want any presents. An hour or so later I saw him from the corner of my eye walking along the hallway rubbing the plaster. He came in and opened his gifts.

Lego Reaction

In the long run, it was a win. It still makes me sad to see him separate himself from everyone. I am glad he knows what he needs and that we know enough now not to force the issue. A few years ago that wasn't the case. He just enjoys these things in a very different way.

Sam inside the bench, with the Legos.. Sammy Heaven

I spent the difficult times during the party (before and after too)  giving up the stresses for the souls in purgatory. It's no secret social responsibilities are hard for me too. I have tried very hard this advent to keep the focus where it needs to be with the children and myself. So many times I came up short on what I had hoped for myself.



But like everything else, God isn't done with me yet. I look forward to celebrating the birth of Christ with my family and making next year better. I am blessed beyond all measure to have healthy wonderful children, a loving husband, and Faith that all the things that suck in my life will get better.
Those tough days, are the days when God is working his magic on me to help me be the person I was always meant to be.

PINNED

Sam really wants to participate in a sport. He has asked to play soccer but in order to do that he would need to wear socks which he refuses to do.  Plus we did find that soccer moves to fast for him. By the time he is aware the ball is near enough  to kick its already going to other direction. It was difficult to watch him play and cry that year. One game he bolted for the parking lot full of cars and another mom caught him.

Baseball won't work because as physically adept as Sam is he doesn't have the patience or the coordination for it. Plus you have to wear a helmet and according to Sam "helmets smell like butt"

Running would be great but Sam sees no purpose in running just to run faster than everyone.

What we needed was a team sport that will utilize his amazing strength, teach him self discipline, allows him to function as a single unit while still part of the team,  does not make him wear socks, helmets or any other uncomfortable gear. Tall order that I really wasn't sure we would find.

Our oldest boy wrestles, and wrestles well. In fact he is AMAZING at it.

 His coach teaches a youth program but there was no way we could afford the 200$ to place Sam in a program that he may just quit week two. Sam was invited anyway and everything came together to allow him to try it. Nothing short of a miracle. Tyler is assisting with the youth program coaching and both Coach P and Tyler know all about Sam. He was invited anyway. Did I mention that?

Of course he is all over the place and he can't stand still. The other 8 year old in the group stands there and listens intently to the couches. Sam takes some extra direction and extra work. he watches himself in the reflection of the dark windows... a lot. But he is learning. Coach P is so patient and wonderful with him. Sam seems to be really enjoying it.

Week two and no refusals and he has even done his homework before practice.

Now That is PROGRESS
and all forward progress counts.

Time To Write

I should be happy. I have a wonderful family. I have a loving husband. Everyone is healthy. I should just count my blessings. I need to just get over it. Give it time. It could always be worse...


I have heard it all

I've lived with depression on and off since I was a little kid. I can remember that black hole feeling as early as 6 or 7 years old. It sounds crazy I know. You probably know more people than you think that are in the same boat. Friends that stop calling you or stop leaving the house. Sometimes they change in ways that don't make sense to anyone. They may even still smile, but it never makes it up their face to their eyes. there are so many of us , silent, hiding, and pretending it's ok.

from web MD  According to the National Institute of Mental Health, symptoms of depression may include the following:

Difficulty concentrating, remembering details, and making decisions

Fatigue and decreased energy

Feelings of guilt, worthlessness, and/or helplessness

Feelings of hopelessness and/or pessimism

Insomnia, early-morning wakefulness, or excessive sleeping

Irritability, restlessness

Loss of interest in activities or hobbies once pleasurable, including sex

Overeating or appetite loss

Persistent aches or pains, headaches, cramps, or digestive problems that do not ease even with treatment

Persistent sad, anxious, or "empty" feelings

Thoughts of suicide, suicide attempts

~it's been a while since I have written. I feel like this needs to be out there.I have fought this my entire life and I have learned there just aren't any easy answers. There are no magic bullets that pull me out of this funk. I also have Seasonal Depression (also known as SAD, how fitting) so this time of  year is hard already.
Usually I can keep things together enough to zombie my way through my day and function in a way that no one really notices. Over the years the depression has increased my anxiety which has in turn created a monster OCD issue.  I know I see things no one else will notice but those little things make me feel crazy. This time it is as bad as it has ever been.My family needs me, so I function, sort-of. I can't ever die because then, what happens to Sam? It scares me when I feel like this. Daniel knows I am struggling and he is trying so hard. It just isn't something that can simply be fixed. Add to this being pregnant and you have a recipe for disaster. I feel like I wake up every day in foggy tunnel. I don't want to get out of bed, I just don't want to do anything, even the things I love to do...like write.Writing was my release, it was cathartic, calming and joyful. Now nothing is. I find myself often thinking "I should be so happy about this" but I am not. I just feel kind of ...numb
I know medication is an option. I know it works. But I also know that I took that route once, when I was pregnant with Sammy. I also know that 5 years later a study came out linking the antidepressant I took with autism. I know plenty of people have taken the same med without the same result. I know I have to do SOMETHING. I just can't...
I am not writing this for sympathy or anything of the sort. I know I am not alone, and this time of year can be hard for lots of people. I hope that by writing this, by putting this out in front, those of you in the same spot and feeling alone will know that you are NOT in fact alone.
Mental health can be such a taboo subject for so many. People believe we are just weak minded, self centered, or looking for attention. This is real, it hurts, and it sucks. So if you're reading this and your struggling, I want you to know you aren't alone... not for one second.

It's all Possible

 



So I have spent some major time crying in my cornflakes the past few days. It's rough here. Sam's first spelling test came back and it was terrible. He is struggling with so much right now and I really just don't know how to help him. Tonight he said he wants to be a doctor. He wants to treat rabies and be a doctor.
Of course I told him he could do anything he set his mind to. I encouraged him and smiled. The entire time my heart was shattering in my chest thinking about all the things he would never do. He can't possibly become a doctor...right?

Then I saw this

autistic-basketball-star-jason-mcelwain-qualifies-for-boston-marathon

Wow.I remember watching the video of this kid playing ball and thinking "WHY the hell didn't someone give him a chance BEFORE this?" So I read the article...twice.
Maybe it's pregnancy hormones, maybe it's being so tired, who knows. I started to cry again.


It changed my perspective on Sammy's options. No, he may never be a doctor, but I can guarantee he will surprise us all.
I want people to believe in my son and here I was doubting his dream. Somewhere in between here and there I stopped believing in my son and his ability. I always swore I would never do that...
Never say never... it's such a long time.

Raising Money

We watch a lot of movies here at the end of the day to kind of wind down. T.V. is almost always a sure fire way to get Sam to sit still, switch the language of the movie and instant success. We have a movie the kids received for Easter last year. It was "letters to God" and I thought  it would be a good movie for the kids. Turns out the kid dies in the movie at the end from cancer.

This is now the second or third time I have lost the movie choice privilege. The first was for picking  "Faith Like Potatoes" where another kid dies. Then another movie where, you guessed it, another kid dies. At that point Tyler suspended me from choosing Red Box movies because CLEARLY I am not very good at this.

a giant board Sam wants people to sign

Sam keeps watching the movie over and over. I am not sure what the appeal of it was for him. i didn't think he understood the premise of the movie. The little boy writes a letter to God every day, and because of it a TON of people are helped  with super serious problems. What Sam did understand though is that the boy died from Cancer. So now he has an idea.



He wants to raise money for kids with cancer. He made a sign for people to sign and he wants to have a lemonade stand. In just two weeks during the farmer's market next door we will have a lemonade stand. 25cents a cup. we might even have some cupcakes and cookies for sale. So if you just want to make Sam's day stop in  from 12-4 on Sunday 2 weeks from now. I promise I will remind you

Sometimes, I don't have the answers.

 What do you do when you don't have the answers? What happens when you can't fix it, when you can't help and there doesn't seem to be a solution? All I know is the question, and it's the same one I always have

"How do I help Sam NOW?"

Third grade is hard. Harder than anything he has ever had to do and for the first time he WANTS to do well with it. He is just so frustrated. He told me today they just learn too much too fast. He also told me that when he gets overwhelmed he stims on his shoes. Sam has never been a huge stim kid, though he does flap and such when he is stressed. I can't help thinking about my poor baby, so stressed at school. I worry that the kids will begin to tease him. Kids are mean, really mean. I remember what it was like being teased and it makes me sad for him. He wants to make friends but it is just so hard for him.

I wish there was a way to unlock his brain some days. Not to make him less autistic, but to make things easier for him. I know he would love to learn if we could just find the way to teach him that doesn't stress him out. I worry that if he continues to be so defiant in class that they will place him out of inclusion and into a contained classroom. He already has a ton of accommodations and modifications to help him through. He gets a ton of love and support from our team. In fact I LOVE his team and I KNOW they will help figure this out.

It could just be growing pains. Between the new school, change of season, new teacher,shorter days, upcoming baby,increased self awareness, and harder work, it may just take him longer to get into the groove.

So for now I am holding my breath every time the phone rings. Hoping and praying it isn't the school.

I Can't Stop The Train

Sammy's birthday is coming.Last year for the first time ever he was aware of his birthday and seemed to enjoy it. He kind of gets the concept of age and getting older. He knows a birthday means he picks his dinner for that day. Birthdays here are always bittersweet. It's hard not to be aware of where we should be.

Over the past year I have felt God working on me more than Sammy. I have felt him nudging me in directions I wasn't ready for. So much has changed in the last few years.

I spent a lot of time railing against autism and being so angry. I personified it and hated it. I was hurt and sad all the time. I felt like I was fighting for my son's life and because I was so busy fighting I disconnected from Sammy in ways I swore I never would. What I found was that the more I released my connection, the worse things got here. After a few really hard months where we considered hospitalization and medication, I stepped back. I looked around and I wasn't happy with what I saw in the mirror. I was so absorbed with his "issues" that I forgot he was a person. I forgot he was my baby, just like all the others. I forgot who he was outside the autism. I let autism consume him and me!

How could I let that happen? Wasn't this what I was fighting against?

I have never prayed so hard in my life as I did after that moment of realization. I cried bitterly hoping that my dear boy would forgive me. He of course did. I am still working on forgiving myself however.

What I see now is very different. I can't really put it into words in a way that makes sense yet. I have been trying to write this post for days now and it wouldn't take shape until today.

So who do I see when I look at my boy.

I see an almost 8 year old with fluffy blonde hair and blueberry eyes. He has a wonderful gap between his front teeth that makes me giggle when he smiles. I see a boy that is so strong and well built that each muscle has perfect definition. I see a boy who has learned to ride a bike and conquered (mostly) his fear of water. I see a boy who is learning to read and write. I see an amazing young man with a thousand possibilities that I didn't think existed for him. I see my boy, my sweet angel of a son, with the power of God in him, because he too, was fearfully and wonderfully made. I see a boy with potential and charisma and an absolutely wacky sense of humor. I see the gift God intended him to be, with autism. It is exactly who he is. Yes, Sammy is autistic, and blonde, and tall, and well built and amazing.

So his birthday will come this year and it will go. I may feel sad even though I try not to. It's OK, God's not done with me yet, thankfully.
there will still be days and times that I will rail against the issues. there will still be times where I fight and cry and kick and scream. I hope you all won't hold it against me. At least now the difference is...

Sam and I are on the same side.

Missing the Point

 Joe Scarborough speculated on his MSNBC Morning Joe program that James Holmes, the man who just killed so many people in Colorado, may be on the spectrum.

"As soon as I hear about this shooting, I knew who it was. I knew it was a young, white male, probably from an affluent neighborhood, disconnected from society -- it happens time and time again. Most of it has to do with mental health; you have these people that are somewhere, I believe, on the autism scale," said Scarborough, whose son has Asperger's syndrome. "I don't know if that's the case here, but it happens more often than not. People that can walk around in society, they can function on college campuses -- they can even excel on college campuses -- but are socially disconnected."

He did offer some sort of half-hearted , ill prepared statement that was some kind of attempt at a back peddle. It was not an apology.


“During a debate regarding the recent Colorado shootings, I suggested that the Aurora tragedy should make Americans focus more on mental health in this country. I also stated that my own experiences raising a son with Aspergers made me keenly aware of how important strong support systems are to those who might otherwise be isolated.


The growing Autism epidemic is a tremendous burden for children, parents and loved ones to endure. My call for increased funding and awareness for Autism and other mental health conditions was meant to support the efforts of those who work every day to improve the lives of Americans impacted. Those suggesting that I was linking all violent behavior to Autism missed my larger point and overlooked the fact that I have a wonderful, loving son with Aspergers. Perhaps I could have made my point more eloquently …”


I am having a hard time wrapping my head this. How does a parent of a child on the spectrum draw parallels between an obvious sociopath and our children!

Part of me though, gets where he is coming from. You see , Sammy has some very violent tendencies.  We have worked hard to overcome them. However, I don't think they are because he is autistic. I am sure the frustration level is exacerbated by the things that go along with autism.   I wonder if Mr. Scarborough is dealing with some issues in his own heart because of his child's issues.

I don't want people to be afraid of my son. I don't want people think that he is frightening or dangerous. I don't want people thinking that my life with Sammy is such an ugly burden that I would rather not be living it.

I want people to know there is light and sunshine here, right beside the hurdles. I want people to understand that life doesn't end because you get a diagnosis. I want people to know, to really KNOW, that having a child on the spectrum DOES NOT mean they will be isolated.


 I want everyone to see Sammy


The boy who loves to dance. The boy who loves to sing. The boy who has love,empathy, and understanding of those smaller than him. The boy who can make me smile so hard that I cry. The boy who kisses my belly, knowing the baby is there. The boy who reaches out, makes friends slowly. The boy everyone seems to like. I want them to see HOPE. I want them to see LOVE. I NEED THEM TO SEE A BOY... not a spectrum, not a diagnosis, not any of those things. Every part of him is uniquely who he is. nothing less, nothing more.




I won't crucify Mr. Scarborough for his careless remarks. I do however feel sad that his son may have heard his words, comparing him to the man who killed people in a movie theater. I do hope his son can forgive him for telling the world he is a "tremendous burden". I do hope if nothing else, that people will understand that autism can't hurt you, but words can.

If you need more information to understand why words like this are dangerous , you can check out these links...

dangers-of-misrepresentation
all-i-want-to-do-is-weep

Also there is a petition asking Mr.Scarborough to retract his statement HERE that was started by Rachel Cohen-Rottenberg

To You

To the woman outside watching my son screaming,

How this family must have looked to you. This gorgeous little blonde child screaming as though I were beating him with hot pokers. You stood there watching us, and I think you may have forgotten to close your mouth. A few years ago I would have been offended and upset. I would have given in to the tirade just to make it stop, because I didn't want yet another person to judge me.I would have gotten in the car and cried until I couldn't catch my breath.

 Instead I looked up at you and smiled. I asked you if you wanted to come and help. I guess I am still slightly passive aggressive. I was always taught it isn't polite to stare.You couldn't decide if I was seriously asking for help. I am almost certain someone called the police as well, after hearing my son screaming. The officers here know us. they know Sam. They know the deal. They drove by, smiled and waved, and kept going. I don't know if you are the one who called, or if it was someone else sitting there watching.

In case your wondering. We did finally get him pealed off the hood of the car. We did finally get him buckled. We did get him to the party. He had a fantastic time.

Big News

We announced something amazing yesterday to everyone or rather Grace announced something

YUP. Grace is going to be a big sister in February / March of next year. We are thrilled but there is a level of trepidation that comes along with it. Yes, I know every mom get's nervous about having babies. I am no different, but adding the special needs cocktail into the mix and some moments my anxiety takes over.
There are no guarantees in life, no 100% anything, no promises, nothing that says lightening won't strike twice. Or in our case 3 times. I know so many people in the autism community choose to not have any more after they have their child with autism. I know , I understand, and I don't judge them in any way. We are all in different places.

I would resent Sammy and autism if I felt it had forced me to give up my dreams of a big family. I would be bitter and angry and heartbroken if I had to give up simply because of autism. No one should have to give up their dreams. It's just unnatural. Isn't that what I work so hard with Sammy for? I want him to see his potential, to see his dreams, and to not hold back. I want to see him fire off into the sky and shine brighter than the moon. WHY? Just having autism , doesn't mean he doesn't have dreams and hopes. He must. We may not know what they really are yet, but we will. He will be amazing!

He will be AMAZING and he will be cheered on by both younger and older siblings. Because autism has messed with me and my family enough I wont let it take this dream too.

I am not a Martyr

When I talk to people out in the community about Sam I always get the same look.  Other special needs parents know the look I am talking about. The look that says "OHYOUPOORTHINGIHAVENOIDEAWHATTOSAYNOW" and is almost always followed by "everything happens for a reason"  or "God doesn't give you more than you can handle"

I know people just want to be nice or say something clever and sweet, but we have all heard it.  I think , personally, the tone used upsets me more than anything really.


I don't want to be your martyr, I don't want to be your poor thing. I want you to understand that this is not a death sentence, it's autism. We live with it every day. It sucks and it's hard but that is ok.

IEP take 2

It's hard here right now. It's closing in on the end of the year and summer is quickly approaching.  The weather doesn't even yet feel like spring and I am already looking forward to the end of the school year.

We had Tyler's IEP meeting this last week and it went well. I love the new Special Education Director. She is really on the ball and totally understanding. She helped us come up with great ideas for Tyler to help his senior year be the best it can..

Tyler will be using a computer at school and will begin emailing his homework assignments to himself and to the teacher's when completed. The computer can come home with him. Tyler's biggest struggles right now are in the realm of executive functioning. He can't seem to organised the steps in his head to start and finish much of anything. Even with the things he loves like wrestling he will often forget his shoes or singlet. It only gets worse if he dislikes the teacher or the subject.

He has some major goals in mind this year. he wants to be captain of the wrestling team. In order to do that he has to be on the honor roll.  Big changes are coming now it seems. He is back on the mat after a devastating injury ended his season last year.

Unconditional Love

There are some things that are just nonnegotiable. Love is one of those things. When you really love someone you always love them. It doesn't change because you don't get what you want. I am so grateful for Daniel and his family.
It isn't often that you hear about how wonderful someones in laws are, but mine are awesome. I came into this every mothers worst nightmare. I had two young children and contentious divorce, I was damaged beyond belief and really just a total mess. If I had been in my Mother in Law's position I would have told my boy to run for the hills, and she may have, but I never heard about it. Instead this woman invited me to her house, treated me with respect, and was never any less that awesome. She took my boys right in as though they had always been part of her world, allowing them to call her "Memere" just like all the other kids.  The boys loved Mem and Pep from the beginning . Even when the boys couldn't spend Christmas with the family because of legal issues, the entire extended family still gave them gifts. That Christmas I couldn't give them much, we had just moved overnight days earlier. I had no money, I couldn't give them a thing. The entire family pulled together and did for the boys (without even knowing it) what I couldn't do.

It's at a point that when talking to my mother in law about AJ or Tyler she will say something about them being a lot like their dad, forgetting that there is no genetic component between them. How amazing that must feel to be so unconditionally loved by someone who doesn't need to love them. The rest of the family, cousins, sister in law, brother in laws, aunts, uncles, and cousins have all been so amazing and loving to these boys, and for that I am so grateful. It was never about me, they didn't have to know or like me to like the boys, and I am so blessed to have them as part of our family.

No one is perfect, but love does so much.

Frustrated and Angry

Has the world forgotten that children are people too. Our kids are people and just as important as those bigger people around them. Have we all forgotten that we were children once too?
Each day I  read through posts of children that are being hurt, abused, abandoned and killed by people that should be caring for them.




This makes me ill. This child is helpless. When will people understand that no verbal does not mean non thinking?  What were these teachers thinking? There is no excuse for this in any way

THE UNTHINKABLE

Then there is this post from Jess over at Diary of a Mom at the Huffington Post about parents killing their autistic children. I understand the stress. I understand the sadness, the uncertainty. I know these kids are awesome I know these kids are incredible. I wish everyone understood it.

and then this weekend at BJ's Wholesale Club in Dartmouth MA. A manager pushed my son Sammy to brush passed him without a word. She pretended like he wasn't even there. He is a person too. I am quiet certain that if it had been an adult, this wouldn't have ever happened.

These children are not throw a ways. Our children are not garbage to be treated like this Our children do not deserve this...
No One Does

Perspective ~ Blogging for Avery's Bucket List

Have you ever had those days where you just feel sorry for yourself?  Do you have those days where you just look at everything around you with an ungrateful angry eye? It can't be just me. I know I can't be the only one here that has bad days and I can't be the only one who cries in my coffee some mornings. This is hard. It really is and on those days when nothing is right and everything is sad I feel sorry for myself.

Yesterday being one of those days in reality this week has been horrid.This week I had dreams crushed,stress increased and drama unfold . The baby girl had a fever and a weird rash, then Sammy started feeling sick, nothing was getting done, then my tooth broke. I found out at the dentist that I would have to have yet another tooth pulled. "Just add it to the partial you are going to make" was the response of the dentist. Yeah thanks it's just that easy. I am 34 years old and I have some dental issues, those have caused me to loose most of my back teeth at this point. You see, not taking care of your wisdom teeth can apparently cause roots across your other teeth to shift and break, that causes hairline fractures in the tooth, opening them to decay. My teeth often go from the inside and by the time I know something is up,its too late. It sucks and I was really angry.
I sat there on the way home crying (who thinks that it wasn't necessarily just about the tooth?) and yelling at God that I didn't get it. This week has been one major disappointment after another and I was angry. I keep asking God what exactly it is he wants from me... I still haven't gotten an answer. It's almost funny right now how angry I was about this. Then I came home and relaxed for a while on face book and I found this.

Avery's Bucket List

I will let you head over and take a gander. It's ok I will wait, I have time. All I could think was "My God, and I was angry over a tooth"
It got me thinking... How does a person parent when the end result isn't going to matter? How does that change your train of thought on which to choose? I had read on another blog a while back the same concept, the child was older when they found out and for whatever reason it didn't resonate like this does. Perhaps its that Avery reminds me of grace, perhaps the joyful looks on mom and dad's faces coupled with the words of a post "SMA please don't take my smile away" It's hard for me not to cry. What do you do when those big decisions that the rest of us stress over have absolutely no consequence? The end result never changes, it's always the same. This little girl may live to be 18 months. That is just six short months from now for Grace. After looking at my girl, and reading Avery's blog I thanked God for his blessing and I quit whining.

Because yes while this is hard and this can suck We are all still here. No one knows what tomorrow brings and yes there may not be one for any of us, but to know your child's last day is coming, It makes my heart hurt just to think about it. Autism is hard, but there are tons of people in our corner. It doesn't mean the fight has been won, it doesn't mean the best options for our kids are there, it doesn't mean much really. It just means that someday something may come of all the research that can maybe help some of the 1 in 88. No one is researching SMA. How can this be? Kids are dying from this and there are no clinical trials or anything? Here you can read more information on SMA and find ways to help get the word out.

Families of SMA

So today I will hug my babies tight, because even though dealing with autism sucks some days, I will likely have very many more and that, no matter how you look at it, is a blessing.

Show me The Money

Sammy and I set this up today. he is thrilled to be raising money for autism research. So if you would like to head on over to the fundraising page, click on my name, and add a donation. every bit helps. Sammy wanted to raise 20-100 dollars but we will settle for 100. Lets help make it happen for him

PAGE TO RAISE MONEY