At 42 Degrees

At 42 Degrees

Monday, October 14, 2013

It was Isaac,...

 A couple topics up today, I couldn't choose one, I decided to do them all.

Isaac chilling out with big brother while his other big brother is buying him some French fries,...cute pix, but it wasn't one of the topics,...I just love seeing my guys together....

1st topic:  Isaac's stenciled shirts for Fall and Winter are mostly completed,...and I have to say that the overwhelming positive response from Isaac's shirts has been such a blessing and it is peace of mind for me,...a small thing, perhaps,...but hey, I'll take whatever I can get,...and it is a comfort to know Isaac can always be identified by what is rapidly becoming a signature style. 

2nd topic: Flu season is about to descend and this very functional and cheap sanitizer station idea is worthy of being shared. My older guys are really good about washing hands and using hand sanitizer and I've got the stuff in every room, but I wanted a way to Gel In, Gel Out, you do at the doctor's office. 

So when I saw these automobile cup-holders at Walmart for $1.98 for a pack of (4) - I thought they might work, and they do. The cup-holder has a plastic bent portion located at the very top. It was very easy to snap that off,...nail to wall and add a medium size hand sanitizer. 

Our adventure walk wore him out!

3rd topic: Being open about Isaac's condition. 

There are times, when it is or is not appropriate to make reference to Isaac's Autism and Apraxia. 

And it's tricky. You have to really be discerning, because most people have never heard of Apraxia and it can get long, detailed and confusing to explain the paradox: 

"He can speak, but he can't speak?"

Especially since I haven't figured everything out myself. 

As for the Autism, that too is a muddle:

"No, Isaac's not like Rain-man"
It's simplest to say:

"Isaac is just Isaac,...he's a blessing,...we love him,...and God doesn't make mistakes. EVER."

Still, it's hard to know when to speak openly or not,...there is always the chance of getting the dreaded: 

Oh no! Your son has the Plague - look

Those individuals run so fast in the opposite direction, my heart hurts for their ignorance, but they have to live with their fears, not I.

So with all that said, I generally do speak quite openly about Isaac's diagnosis. Although that can be tricky too, because I know special needs lingo can be a muddle unto itself without stepping on politically correct toes.  Believe me, I don't want to offend anyone, but I also don't have the time to be worrying if I say autistic or has autism, and add in the side of apraxia, is mass confusion,..and a headache, I just don't need.

So sticking to simplicity, I speak of Isaac being diagnosed with Apraxia and Autism,...and the challenges he faces,...but  you know,'s still it's tough to say, one wants their child to have special needs,...and having to admit it,...speak it,...acknowledge it to others,...can take a mighty big dose of courage,...and I admit there have been plenty of times, when I just smile and let the issue slide,...

However, something happened today that has really changed how I feel about being open about Isaac's condition. 

Actually it began last night when my husband and I were talking an evening walk sans: Isaac who was hanging out with his Teddy. 

We have neighbors who are moving, and the lady of the house flagged us down wanting to give us some toys for Isaac,...we've not seen our neighbor in quite a while, they had already moved six months ago, and their house had just sold, thus they were cleaning it out. Anyway she had not heard about Isaac's diagnoses, and when she asked how he was doing, I told her about his diagnoses and his preschool, but I felt funny doing so, and wished I hadn't said anything. 

Now, we're talking a sweet lady here and I didn't get the 'plague-look' - but I just wished I hadn't said anything,...I don't know why, but I just did,...especially since the odds of us ever seeing this neighbor again,...are extremely low,...I should have just said with a fake smile: "He's fine."

Fast forward to this morning and Isaac was hanging out with his Michael while I took a walk outside. While walking pass our neighbor's house that was sold, I was frantically flagged down by an older woman with an anxious expression. 

She wanted to talk to me, she desperately wanted to talk to me,...and it was about her grandson,...who was three years old and recommended to go to Isaac's preschool. She said her daughter had been so worried about her son and putting him in a new environment with his challenges. 

Talk about divine appointments!!!

The older woman had decided on Sunday to ask our neighbor if she knew anything about the preschool in question,...and the only way our neighbor was able to refer the older woman to me,...was because I had been so open about Isaac's condition the previous night!!!

Been there and done that on the anxiety of placing Isaac at his present preschool and it was such a pleasure to be able to reassure the older woman that her little grandson was going to be in the very best of care.


It was such an amazing encounter,...and lesson learned,...because we are all in this together,...and word of mouth is sometimes the only way to network within the special needs community, next time someone asks me how Isaac is,...I will not hesitate to tell them,...even if I have to drag us both through the entire paradox. 

4th topic: How others perceive Isaac's condition.

Kinda relates to the 3rd topic.

The two pictures here illustrate how I feel others, not all, but enough, 
how they perceive Isaac and his condition....
I feel, they can barely see him through 
a web of misunderstanding.

And here is how Isaac and us who know Isaac see him:
whole and well in sunshine!

Since this spring we have been blessed to attend Church of the Highlands,...we love our new church, the members and especially the special needs ministry: Highland Havens.

Every other Sunday I work in the Highland Havens ministry,...individuals,...children and adults are given what assistance they need, it just someone to guide then to a seat, or perhaps sit with them and assist with note-taking,...and of course there is an entire department devoted to signing for the hearing impaired, for the children,...aides are assigned to help them through their classes and children's church services. 

This past Sunday I worked in the Havens Ministry,...I help with the older children, to keep Isaac from dominating my attention in the preschool department. 

However Sunday our staff was short due to several sicknesses, and for a time, I was the only person with the Havens ministry on call. 

Apparently Isaac did fine through his Sunday School class, but in the second hour, I was called out the children's church because they were having issues with a special needs child in the nursery. 

It was Isaac.

From the frantic look and anxious voices from the teachers in the corridor, I expected to find my little guy in a full blown meltdown, which would have been utterly rare, as Isaac, thankfully doesn't have meltdowns. But when I walked into the room, all I saw was all the other children sitting on chairs watching Veggie Tales,...while Isaac was off to the side playing by himself on a rug.  

It was all I could do to keep from saying, "And,..the problem is?"

Obviously Isaac wasn't cooperating about the chairs, but hello,...he can't,...if he could,...he would,...and we're doing all that we can to help him learn how to cooperate in such situations,...but it's going to take a little time, folks. 

Delighted to see me, Isaac immediately wanted to count, the classroom had a very large clock, we counted,...and chanted a few colors,...then Isaac's Havens aide, who had been running late arrived,...and the no-drama-drama was ended.

When I went back to the children's church, I had one of those flashes of despair that like to pierce your soul, concerning your child's condition.

Let's face it, all those other three year olds were sitting in those chairs so nicely, but my Isaac didn't, nor did he understand that he should. Heartbreaking. Even more so is that he was at church, but isolated by his condition, and I had to ask myself:  'Was he even getting the benefits of community?'

Before I could start sobbing, I took a perspective break, and I am getting good at them, because let's face it, the teachers in Isaac's class, obviously didn't know how to deal with a child with his condition, and that's OK, believe me, three years ago, I wouldn't have known how to either. 

Most of the people who work with our Havens ministry are connected to the special needs community - either as teachers, aides, therapist, or like myself,...they love someone with a disability.

The teachers saw the special needs tag, no aide and freaked out when they couldn't communicate with my little guy -- that web of misunderstanding.

Once the aide arrived it was all sunshine. 


More than anything I want Isaac to learn from his church experiences is to:

Love one another, and be kind to one another. 

And after my perspective check, I do believe that is happening - even if he's not sitting nicely in a chair - Isaac has to feel the love of those caring for him from his teachers to his aides,...and I'll be the first to say his teachers can better minister to Isaac when he has an aide to redirect and redirect and redirect when needed,...and translate his communication challenges, cooperation can be achieved. 

After church, Isaac had a cardboard cross, a Bible story card, a colored, or rather very scribbled picture, and a lollipop,...just like all the other children. 

It was all sunshine. 


Long post with four topics, thanks for reading if you made it this far. 

In retrospect, I know I should have narrowed the topics down, but  I felt they all needed to be addressed,...or perhaps I just needed to digress,'s a lot to take in sometimes, those paradoxes are pretty paradox,...and I just love my little guy so much,...all I see is the sunshine!

Until I post again,...may God bless and keep you!

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