A day at the park

              For mothers day I chose to do one of my favorite activities of all....to go hiking! Spring has finally sprung here in Northern MI, and getting outdoors was perfect. My kids are used to this kind of activity, its something we will do 100 times this summer! my only mistake was not starting small...and dragging them on a 2.8 mile hike for the first of the year...oops..lol. They all did well, and at the end John even said "pheew, that was a great walk in the woods."  since they all did so great, I decided a trip to the park should be next on our list, I knew they would all love that!

             Of course as we pulled in they all squealed with delight, and jumped out of the car as soon as we parked.  I always worry about John at the park. Since his behavior is always triggered by his mood..like most people,except different... I always hope his mood is still good. On a bad day, a kid laughing at him for say, falling down, can result in a full on meltdown. A good day, he will laugh right along..and run off to play. Thank God yesterday was a more than good day, it was wonderful!! He found a friend from his class (saying that always makes me smile,a friend) and they played TOGETHER the whole time!!! I'm watching John grow, and change so much...and I love every second of it.

Mad

Its been a while since I posted, Ive just been so busy with the new baby. Ive been on a mission to get John into a better school. Its a charter school, and has better programs, more qualified teachers, and more resources. I'm so angry, because I don't see it happening. There is a waiting list, a long one. Going through all of this brought out some feelings I forgot I had.
 Today after receiving an email that basically said you are screwed, hop on the waiting list but it probably wont do you any good, I sat here, and i cried. I cried because my baby is autistic, I cried because I feel helpless, I cried because I am soooo mad at myself, I cried because my family makes me feel like I'm not good enough to raise a child with autism. I'm so MAD! I just want to scream loud enough for the whole world to hear me! I want to know why, why does my baby have to struggle every day! Why! Its just not fair. I know, I know it could be worse, I know some children have an even harder time....but it doesn't make me feel better right now. What can I do? I wanna know, what can I do? I will do it, I will do anything. I am hopeful, I am...but sometimes, I just cry....
I feel better now. I will post again later this week when I am in a better mood.

Can you imagine...

Can you imagine, what it would feel like to be so afraid of choking, you would rather not eat. Even the things you enjoy most, you wont touch. Last week, I felt lucky to have a child on the spectrum...who was adventurous with foods. I know one of the many battles moms with children on the spectrum have, is getting them to eat,and try new foods. Well, John ate so well. He ate everything from chicken,to sandwiches, pizza, and even fish. Well, today I am heartbroken, as my child is sitting at the table, crying that he never wants to eat food again.One time, just one, he gagged on the cheese from his pizza.....and now, well now he is afraid he will choke on anything he eats. So far we have tried plain cheerios,farina, pizza, and a cheese sandwich. He finally ate enough of a silly egg, that I feel like he has had something. Although he has cried at least 6 times while eating this egg, he is still eating. I just hope this chapter doesn't last long.

Mittens and Hats

I kinda have a love/hate relationship with the winter. Its hard for me to say I feel strongly about it one way or the other. one of the things I genuinely hate about the season, is the snow clothes!!! My older two children keep track of their own gear. Every now and then, we have a missing hat,or forgotten pair of snow pants.....but its not so bad. John, oh John.....  Every single day he forgets at least one item. I have spares, yes of course. As of today here is what John has in his cubby at school, including what her wore this morning: 3 pairs of snow pants,3 hats, mittens, and boots. For my older children, a forgotten hat is no big deal..just grab a new one. With John, only two hats are ok for him to wear. The others are itchy...and he will take it off, and throw it in the snow. Same with ,mittens. Only one pair of mittens has been suitable for him, in two years!! Not gloves with fingers, just mittens. So if he forgets both pairs, I have nothing! Also, the new ones are too hard he says. The thumb never goes in right!! If I had only know how perfect those mittens would be, when I bought them. I would have bought 3 pairs! Oh, and the thing I love.... John loves to play in the snow. More than playing outside in the summer, or any other season. As long as he has the hat that's not itchy,and the mittens that the thumb wont get stuck in.

Are they connected??

                Wow, what a tough week we are having here. John has been eating so little lately, its making me sad. His favorite foods that he normally would gobble up, he is barely touching. Before school, we beg,and plead, and then threaten him to eat.....but no luck. I feel like a horrible mother, my child is NOT eating enough for breakfast...and I know it. Now, for the same amount of time, he has had a cough...that just this morning sounded kinda ugly....but not too ugly for school. I gave him some Mucinex....and sent him to school. Also, for the same amount of time, he has been coming home with frowny faces on his daily card, and unfinished work. So, I wonder....are they all connected??


               Sometimes I notice after a few days of John having what we call, very autistic days, I notice he is not well. So maybe, because he is not feeling well...he is not eating well. Maybe because he is not eating well, he is acting up in school? No, I don't need something to blame it on...because ultimately it will always be the autism. However, if there is something causing some kind of chain reaction, I want to make it stop! I always say...why make him wear the shirt with the annoying tag, if it will set him off all day? Just remove the tag right?? Same thing with this. I hope the medicine will help...usually Mucinex works wonders for him. Last year, when he had a "bad note" in his backpack, he would have to go to his room. We haven't done that in a while...it was very effective for him. So yesterday we had to send him to his room. It breaks my heart to see him so upset,and worked up. i am hoping today he comes home with a smiley face on his card, and a smile on his face!

Rough days

I look at John, my sweet 6 year old boy. I watch him go on with his business, stimming away,rocking, making his strange noises. Its something that as a mother of an autistic child, you never can get over. I don't mean to say that in a mean way. What I mean is, it, for me, is what makes it so real. It is my reminder everyday that John is autistic. Sometimes as I watch him, I feel myself getting teary. I can usually get it under control....since this usually happen in public, and I don't want to cry in front of people. I shouldn't be crying anymore...I have known John was different for enough years to come to terms with it. Anyway, inside I am screaming "John just stop it! stop what you are doing and you will be alright!!" I feel like, that is all that makes him autistic. Like, he is otherwise what we in the autism world like to call, Neuro typical. Deep down, I know that is not true. He is autistic, he will always be autistic. That is just his most obvious sign of it.


       People will often say to me " You cant even tell that he is autistic, I never knew until i saw him doing that!" I'm not sure how that is supposed to make me feel. Are they trying to make me feel better?? Is that their way of comforting (?) me?? Well, i guess it doesn't make me feel anything. Not happy, not sad, not angry. I just hear what they say, and think "ok."  I just wonder, how do people who don't know autism, what its like, what it looks like, how do they feel when they see John doing that? I have seen people look, with curiosity, sadness, and sympathy. Like, they are feeling bad for him,and me. Like they think he is lost completely, with no hope for a normal life ever. When I see people looking, in that way, I wrap my arm around him....as if I am saying " i love this little boy, and I am damn proud of him. No matter what you are thinking behind that look, this boy is just perfect."


          Moms of children with autism say they are proud of their child, and that they are perfect, and how happy they are to have them as a child. People think...why? Why are you proud? Why are you happy? Its simple. When you become a mom, no matter how many times you have done it...the first thing you feel when you look into your babies eyes is the purest,most real true love at first sight. Your whole body is engulfed with this feeling of happiness, and warmth. Your eyes cry tears of joy, while you think...I created this tiny little human being, and i immediately love him. That doesn't go away when they aren't reaching milestones. It doesn't go away when they don't speak to you, and instead scream at the top of their lungs for what feels like hours (and sometimes it really is) just to try to tell you they don't like how their pants feel. Or to tell you that they don't like the way you set the table. Then the day they say something out loud. Something you understand, something they want..... You are more proud than you have ever been. You scoop them up, hug them tight, and once again fill  up with that feeling of overwhelming love for your baby. One day, some stranger behind a store counter will smile at you and say..." You have a very sweet, friendly little boy there!", and you will walk out of that store again feeling that overwhelming love, and thinking how that person doesn't even realize how they just made your day. I feel proud over and over.


               Now, its not as if I don't feel this way when my other children accomplish things. When my oldest son brings home a test he got %100 on, I am proud. When my daughter writes a story, neatly,and with the words all spelled correctly I feel proud. Its just....different. I know that they can achieve those things, I know they are capable. With John...I am not sure what he can and cant do. I have hope for him. I do believe someday he will be able to do things everyone else can do. I just cant tell how fast,or easily things will or will not come to him. Will he learn to read with the rest of the kids in his class this year? Will he ever be able to do 5 consecutive jumping jacks? Will he ever learn to ride his bike? Will he ever even try to ride it? I just do not know. I knew his sister would learn to tie her shoes someday..... I hope John will.


              Anyway, just wanted to say that we have our rough days....sooo many rough days. There is usually at least one struggle daily. But when I look at John, my heart fills with the same love it fills with when I look at his brothers and sister. I am proud of him.

Why I am blogging

            I am not a very talented writer at all. I also never in my life imagined I would EVER create a blog. The thing is, there are a lot of things in my life, I never imagined would be. For one, I have 4 kids!! They are my world, and I love them to pieces....I just never thought Id have 4! Second, 2 years ago I moved 1,000 miles away from the only place I ever lived...and from my entire family. It was one of the hardest things I have ever had to do. Third, I am the mother, to a wonderful,amazing autistic child. His name is John, and he will turn 7 in February. John is considered to be high functioning, but we still have struggles every day. Some of them, we hardly consider to be struggles anymore,because it is just a part of our lives now. For instance, I used to cook with onions all the time. Now, its easier not to,just to avoid a meltdown at dinner. Now, that's not to say I never do....but usually if i do, I will have to prepare something else for John. I never thought Id allow one of my children to bring a toy to church....but if we don't...John will be very disruptive, and he will come off as rude,and a as child who lacks discipline.
            Anyway, I'm a tad off topic here. The reason i have decided to start a blog, is to share with people what its like. Instead of having to tell people over and over, how John is doing...I will do it right here. I hope to be able to get on here regularly, and post stories,pictures and video. Plus, John would absolutely love it if he were the Star of a Blog!!! I hope everyone who comes across this blog, will enjoy it. Maybe even learn a little about what autism is, and what it is like.