Tuesday, August 19, 2014

Letter to the mom who used to be me...

Dear mom who used to be me,

Maybe it was a long time ago, or maybe just a few years, but I know you are out there. You are the mother who used to be just like me. You were single, you wanted to pull your hair out on a daily basis, you worked, or maybe you stayed home, but our biggest similarity is, you had children with special needs too.

Who really cares about the label? Maybe your kids had Autism, Downs Syndrome, or one of thousands of other conditions. Maybe they were emotionally delayed, maybe they had behavioral problems. Maybe it was so long ago that no one really knew what to call it.

One thing I am sure of is that like me you stayed up late at night, and you worried. You worried about tomorrow, you worried about the first day of school, you worried about your child making friends.

Were you afraid? While other moms were celebrating the first day of school, were you paralyzed with fear? Were you afraid of sending your child out into a very large world without you? One where people are not always kind? Where around every corner lurks the bullies of your nightmares? The ones who would hurt your child, emotionally, mentally, and probably even physically?

Another thing I'm sure of is that you were tired, beyond tired. You were exhausted, not a normal kind of tired, but a exhaustion that comes from never having enough hours in the day, never being able to slow down, always moving on, to the next appointment, the next session, the next meeting.

While other moms attended PTA meetings and Little League games, did you feel like you didn't belong? Like an outsider. Were you the mom whose child didn't like sports, the mom who couldn't attend PTA meetings at school, because you were always to busy doing other things,  more important things? You were in a therapy session, or attending a IEP meeting, maybe you were able to grab a few moments to yourself at last.

Did you ever get angry? When you heard other parents complaining about "trivial" things? Did you ever want to scream at them? Ask them if they know what it's like to watch their child suffer, in the hospital, with tubes, and wires, and the fear. The fear of watching your baby stop breathing, of seeing a machine breath for your child. The fear of watching the monitor as their heart rate drops, and drops some more. Seeing doctors and nurses work on your child, and not knowing, if this is it.

Did you feel guilty? Guilty about getting angry? Guilty about not having more faith? Guilty about not being thankful enough. After all, your child was still there, still with you, in spite of everything.

What happened as your child got older? Did they attend the homecoming dance, the prom? Did they call their friends on the phone just to chat? Or did they hide in their room? Playing video games, hiding from a society that made them uncomfortable? A society that didn't really care.

How is your child doing today? Are they happy? Well adjusted. Did they get married? Do they have a family? Do you have grandchildren? Or are you still caring for that child? At a time with most other parents are taking second honeymoons, and talking about their empty nest....what are you doing?

I guess my biggest question is....does it really get easier? Or do you just get used to it? Do you adjust? Are you satisfied with your life and the way things turned out? And above all, the most important thing....are they happy?

Wednesday, October 2, 2013

Wow! It's been long, and I'm very sorry! I'm going to try to blog more often. The past few months have been very difficult for various reasons. But, I'm going to concentrate on the positives! Today we attended the Special Games Day. A and his brother attended. It was wonderful watching A have such a great time! He ran, and played, and participated. Today was a happy day, and that's all that matters today!

Here are some pictures I wanted to share with you.
 Getting ready for the race.

 My sweet happy boy, loving the slide! 

Monday, October 8, 2012

A message to the elderly woman in the waiting area...

To you, yes you, the sweet looking elderly woman sitting in the waiting area at a (not so) local Cardiology office. I saw you notice us, I saw you notice us about the same time my completely adorable, red headed freckled faced son darted across the room, toward the door that leads to the parking lot. I noticed you notice me leave the front desk where I was checking in, and try to get my son to come back with me. I saw the judgement in your eyes when I finally picked up all 60 pounds of my kicking, giggling, squirming son. I saw you glance at your husband when my other child started crying, then screaming, then he started smacking at us as we tried to comfort him. I could read your thoughts....

"If that were my child I would...." 

I wonder, if that were your child what would you do? How would you have handled the daily struggle. The struggle to do what is right, while the everyone in the world tells you that you are doing it wrong.

I know you don't know much about my children or my situation. How could you? I saw you notice the braces on my youngest sons legs. That much is visible. But, how could you know that he was born so early that the doctors gave him no hope. How could you possibly guess at the doctor appointments, surgeries, and hospitalizations he has endured.  How can I expect you to know about my six year old's Asperger's and his ADHD? How can I expect YOU, a stranger to understand, when there are those who are close to us that really don't understand. 

Those that think a good spanking would do the trick. That my child is spoiled and willful. Those that will never understand the fact that his senses are at war with themselves. That the lights buzz, and everyone is talking, and yes, that even he can "feel" your thoughts, and all he wants to do is run. Though he may be to young to understand, he can see your judgement. 

So, I am sorry for whatever situation brought you to a Cardiology office, I am sorry that you felt my children ruined your morning. I hope that one day you will understand. 

You will probably never read this post, but I hope that this post will help someone just like you. That it will make them want to understand more about children like mine, and more about what parents like me go through every day! I hope that this will make someone do a little research. Make them learn a little more about Autism, Asperger's, and sensory processing ...I can only hope! 

The extremely frazzled mother chasing a child around a waiting room, while her other child sat in a chair screaming! 

Wednesday, September 26, 2012

Comfy cozy and Crazy socks!

Day two and three of International Homeschool Spirit Week have been a blast! Tuesday was comfy cozy day, and we made sure we were comfy cozy! A was in his pajamas and we did lessons on the couch, the recliner, and in our cozy homeschool reading corner!

Today (Wed.) is crazy sock day! So we pulled out our crazy socks! 

We wore our crazy socks to a awesome field trip to a local Apple Orchard.

 We are doing a unit on Johnny Appleseed and Apples, we will end the week with a field trip to a local celebration! The Apple Festival! 

Monday, September 24, 2012

Homeschool Away From Home Day!!

We are celebrating "International Homeschool Spirit Week" this week.

Today was homeschool away from home day! We took it to the park and then we joined some local homeschoolers for some 4-H fun!

 I took some photo's to enter them into a contest sponsered by "Great Homeschool Conventions".

Here are some photo's from our day!

Sunday, September 23, 2012


I am so tired, and I don't just mean normal end of the day tired. I mean I am exhausted, dragging, can't keep my eyes open (but have no choice) tired. Why am I so tired?

Well A and his brother little E (who may or may not have a ASD diagnosis in his future) have both decided they don't need sleep any more. I don't mean they are pushing their limits by staying up a hour past bedtime. I mean they really, truly do not seem to need sleep, so where does that leave me? You've got it...exhausted. No matter what I do, A does not want to go to bed, when I finally do get him in bed he usually starts crying...then I hear about every little thing that has been bothering him for the past six months...for example, last night (or should I say at 2:00 AM this morning) A was in tears... "I want a parrot...pig....monkey", "why won't Bubba (big brother) let me play on his computer", "I don't want to do lessons" and "why do I need to sleep? I can stay up all night....". 

Little E (read more about his story here), he will go to sleep, and he will sleep good for a couple of hours, then he gets up.  I tell him "E back to bed" and he goes back to bed, only to pop up again in about a hour. The last thing I remember is hearing E talking and laughing in his room at approximately 3:00 this morning. A's crying spells doesn't help and usually they wake little E up!

I remember when my boy's were newborns, I remember the exhaustion of waking every two hours, well I feel like that, except maybe worse. I sure hope this is just a phase, I wonder how long a person can go without sleep before totally going bonkers!  Ugh!

Actually, I am almost used to it! I guess the body adapts!

Sunday, August 12, 2012