Today I realized I’ve reached a new level.  Now all I can think about and focus on is his education and making sure he gets the education he not only deserves but is entitled to.  He is entitled to an education like every other child.  He needs to learn to live in a world that isn’t going to be modified for him.  An employer isn’t going to modify his work expectations for Little Bug when he gets older, life isn’t going to modify itself to fit Little Bug’s needs and ability to comprehend what is needed in any given situation.

It’s strange but it’s in a way a good feeling.  A feeling that I’ve overcoming something that held me back and now I can move forward stronger, more knowledgeable and more prepared to help Little Bug in life.  It’s almost as though a weight has been lifted as strange as that might sound.

Yes, I’m scared to make mistakes when it comes to school, education, IEPs, ARD meetings and so much more but I have to remember who and why I am doing it and just do my best, just like I ask Little Bug to do. “Just do your best” of course for me, I don’t think I’ll ever feel like I’m doing it 100% right but I can try.

Our next DAN doctor appointment hadn’t been scheduled since our doctor was looking for another office to move to and we were told they’d contact us within 30 days.  Well it was well over 30 days and I hadn’t heard a peep and couldn’t locate them and the office they were at previously didn’t have any contact information or maybe they just weren’t sharing it.   Anyway, I remembered we hadn’t gotten the results back on a test I mailed in (and paid for)  so I took a chance and called that company and thankfully they had a contact number for the doctor.

Once I actually got a hold of someone we scheduled an appointment two days later.  Well by now, it’s been almost two weeks and I had continued Little Bug’s injections on schedule so guess what? More bumps and again right at the injection sites.  Ok, now I’m really getting worried and I don’t like this one bit.

So we make it to our appointment and the doctor tells me it appears that he’s developed an allergic reaction to the MB12 so I ask what other options we have.  She recommends we try the MB12 cream but continue with the injections till the cream comes in.  Uh hello! If it’s an allergic reaction do I really want to do that?  I went ahead and did it one more time just to see if he’d get another bump but with the stipulation that if another bump appeared that was it. I don’t care how many I have unused.  Sure enough another bump so no more injections.

Of course not only is the cream extremely expensive it’s bright red and can stain and it has to be applied twice a day everyday and remain on his arm for 45-60 minutes. Not easy to get a kiddo not to move his arm or get red stuff on his clothes.  But if it’s easier for my Little Bug it’s okay by me.  (That photo up there is what the MB12 looks like on his arm after about 20 minutes. Fortunately it washes off easily.)

But just when I think I can’t handle one more thing, not a single one, for no reason at all my Little Bug burst into tears on the way home from the grocery store.  He doesn’t know why and he can’t stop.   But in that very instant all that frustration, stress and feeling of being overwhelmed gets pushed away as if it never existed. He just needed mommy.  He needed mommy to hold him in her arms, wipe the tears away and kiss him gently on the head.  It took more than one hug but you know what just when when I think I can’t take anymore:

I am reminded of how much grander love is than all the stresses that I could ever endure.

I am reminded that everything I go through is nothing compared to what my Little Bug faces every moment of every day.

I am reminded how important my love and loving arms are to my children.

I am reminded that God gives me a strength beyond what I deserve but He knows I need.

I am reminded how blessed I am to be a mom.

And I am reminded of the power of the love of my children and their little arms around me have.

I’m glad it took more than one hug ’cause I guess I needed one too.

First of all I needed to pull out those binders I have other stuff in and get moving on this.  I emptied out several binders I had and went through a ton of paperwork and organized them all into binders for each of the school years past.  At the moment, everything in the binders is in the correct binder, in chronological order and every sheet is dated on the bottom right hand corner in pencil.  This at the advice a good friend whose helping me understand all this.  And by the way I am eternally grateful.  That photo shows you where I am right now. Not too bad although those don’t include any of his school or homework assignments yet.  I still have them in a box and need to incorporate them. Once that’s done, I’ll start indexing them.

Here’s what I’ve got left to do:

Yep, I’ve got to get that paperwork into that binder. Not gonna happen till I get some bigger binders.   Once that is done it will be time to create an index and tab each and every separate document.  Yes, it’s a lot of work but going to be well worth the effort and it is something I should have done ages ago.  If I want to make sure Little Bug is getting an appropriate education I need to know what’s going on and track it and I can’t do that correctly if I don’t keep everything in order.  So that’s my goal for this summer and from here on out.  Once the hard part is over, keeping up with it should be much easier and less time consuming.

But as you can see I am well on my way to getting and staying organized with all the special needs documentation.  So glad I kept EVERYTHING

So, how’s your documentation? Is in it order or in a box like mine was?  Can you find what you need when you need it?

Princess was up to the challenge and tried them but there was NO WAY Little Bug would even have them on his plate.  It was a long day and no one was prepared for or in the mood to handle what was ahead.

Meltdown city!  Wow, who would have thought just putting a couple of green beans on a plate would send Little Bug into such a spiral.  He became so angry and refused to eat.  We had to take him to his room to let him cool down.  It was  a full blown meltdown.  Hadn’t seen one of those in awhile.  He cried, refused to eat and got so frustrated but at least he could tell us why.  I mean, we knew why but at least he was able to coherently tell us why – he didn’t want the green beans.

I talked to him about trying new foods and this special diet we were going to try; he still refused to eat them but was calm enough to return to the dinner table on his own after only a short time. I was grateful he was able to pull himself out of it as quickly as he did.  I think I will wait a little while before I try them again or at least canned ones.

When we went to the store today though he asked for fresh green beans so I bought him a couple even if he doesn’t eat them maybe he’ll get interested in them enough eventually to try them.

photo credit: OliBac

Well, there’s a first time for everything and I’ve been saying myself that the more experiences we can expose both our kids to the better.  Hubby must have felt the same way.  So we prepared ourselves for a day in the sun and parade of cars.  These weren’t just any cars they were decked out, creative cars. Lots and lots of them.  Over 300 would be about right.  Let me just share with you a couple of Little Bug’s favorites and one or two we thought were pretty funny.  Hubby even got picture of the “Grand Marshall – Dan Akroyd” behind one of my husband’s favorite cars in the show. I’ll show you one of those too.

I have to admit that was a first for me, all of us actually. We’d never been to an Art Car Show before.

As for Little Bug, yes there was plenty of over stimulation, sensory overload and more but after it was all over and we were on our way home we asked him if he had a good time and he said yes.  He told us which cars were his favorites and which ones he didn’t like cause they were loud.  He shared his favorites with his friends and teachers at school as he had me print out some of the pictures so he could take them to school to show off.  So, sensory issues or not it was a great experience he wanted to share with others and that in itself was well worth the new experience.

Princess’ favorite was of course pink, Little Bug’s favorite was the big red wagon and Hubby’s fav was the Blues Brothers.  I’m glad we had a good time, much better than sitting at home.

For me and my family, every day is autism day,

every day we face the challenges

every day we celebrate the triumphs.

We strive to educate others,

we encourage research and finding answers to your questions

and those of our own that we still tend to ask.

We seek acceptance and understanding for who our son is.

Accept him with his challenges,

enjoy his laughter and friendship.

He is a child just like yours.

A child with a love so genuine it could bring you to tears,

a love so deep there is nothing deeper.

A child with a dream,

a dream he will someday fulfill.

Thank you Little Bug for being the amazing, wonderful, loving child that you are and the joy and happiness you bring to our lives each and every day. I thank God for you and Princess with every breathe I take.

Let me back up just a little bit and paint the picture for you.

After school, Little Bug comes over to me and says “mommy, I feel great in school” so I ask why he felt great about school.  He rushes over to his backpack, pulls out some stapled papers and proceeds to show me each and every one of them and shows me the grades he got on them: the comprehension stories 75% & 100%,  weekly spelling 81 (he’s writing cursive now), finding places on a grid 100!!!  with a note from the teacher “no help needed & a smiley face )  He was so proud – just floating on air and so was I!

Not a few minutes later, Little Bug wanted a snack and decided on crackers.  This was a new pack and hadn’t been opened yet.  I heard the packaging noise and asked what he was doing. “Oh, I’m just getting some crackers.” Thoughts and sentences as clear as day, just more bliss to this mommy’s ears.

Then it happened, the screaming and uncontrollable crying.  I jumped up and looked around the corner and there he was, completely distraught, on the floor because as he tried to open the package, it tore and crackers fell on the floor.  I tried my best to calm him and tell him it was ok and not a big deal.  He proceeds to tell me, through the crying and tears “I tried to open it mama, I did, I did pinch, pinch, pull but I still spilled them on the floor.”  I tell him, “no baby, it’s ok really.  We can just pick them up and put them in the trash can.  You did good, you tried.” “No I didn’t do good” he cries out and continues the uncontrollable, overwhelming crying.

All those feeling of self-worth and high self-esteem, crushed, gone in an instant with just a few dropped crackers.   I wish so much that I could make those overwhelming feeling of failure go away.  I wish those moments of sheer delight and belief in oneself could make those moments of failure (in his eyes) seem as small as they truly are. I wish I could make him realize that.