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.

I am so impressed with stories like this one: The iPad: a Near-Miracle for My Son With Autism.  I was just reading about the use of an iPad with a child with autism.  It’s amazing how a tool like this along with apps can do so much good to help children.  Just the other day while sitting at therapy I overheard another parent conversing with the therapist discussing how they were using the iPad with their child and how they wanted to incorporate it into therapy. They too mentioned what a great tool it was and how their child was really able to work with it.

I’ve wanted one since before they came out but that’s just cause I’ve become an apple fan and I like techy tools like this.  It’s out of my price range though.  But for those that can afford one, it really seems like it along with the right apps can really help special needs children.  It can give them the opportunity to share their creativity which they may not be able to do if they have limited muscle control in their hands.  I don’t know about most special needs children but I can tell you from experience, I have been blown away by my son’s computer abilities.  He just amazes me so much.  I’ve heard that from other parents at therapy too how they are amazed at how well their child does on the computer.

In the article I mentioned earlier, I thought it was great how they created their own social stories.  Now, this is where my son would really benefit from one.  Social stories can really help a child with social skills issue really get a visual of how behaviors should be in social settings.

I hope they continue to make more apps and families with special needs can get these into the hands of their children whom it can truly benefit.

photo credit: simplyrikkles

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

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.