Manners

"More"

"Please"

He might be a J-man of few words, but he is polite!!!

Sign #9 for those on sign watch.

Pia

Signs, Signs, Everywhere are Signs....

This is what happens when J-man is

left alone with chips

We have had a mini "sign explosion" at our house.

For a year-plus we slaved at the sign "more".

This June, J-man got "More". A few weeks later, "Go".

And now I can say that we have eight signs. EIGHT. Might not seem like a lot to you, but I feel like we are at the start of something wonderful.

Our eight signs are:

More

Go

Open

Ball

Fish (don't ask me why... he likes fish)

Eat (uses only sporadically, but I have seen it!)

Help

Candy (got this one immediately)

I can see a few more emerging, but I am holding off on calling those official. Not all of the signs are textbook, but they are approximations... and consistent. And he is spontaneous with them. And today he even combined two signs together (more fish)...

I am going to the library to rent Signing Time DVD so I can learn more signs to teach him.

I love this.

Pia

Giving him clarity

An intriguing thought was presented to me the other day, and I have found myself thinking about it all weekend.

I have always had issues with being excluded from the J-man's therapy. Philosophically, I have felt that it was important for me to learn what to do with him. Also, I have just had a gut reaction to the idea... I just have never thought it will go well. However, our newest speech therapy location does have one-way mirror-windows so that I can sit and observe. Our speech therapist there tried to 'encourage' me to step out and observe, instead of sitting in the room with Jonathan during therapy. I didn't like the idea and neither did Jonathan... he basically melted down every time we tried. So, we have backed off for the summer...

This week I spoke with the Apraxia expert (JJ) who evaluated Jonathan a few months ago. I contacted her because I had recently watched a video from the Childhood Apraxia association. One of the experts interviewed on this video stated that if your child is not making "progress" in speech therapy within a 'short' period of time, you need to seek out other therapy or switch up the techniques or strategies used. My question to JJ was how do I know if he is making progress? What defines progress? Obviously if he is talking up a storm... well, there you go! But if not? Are 5 signs in a year and a half progress? Is that enough?

Anyway, we spoke at length about Jonathan. Where he is, what we are doing, where do we go from here....? I won't bore you with the details. What stuck with me from the conversation was her take on this 'separation during therapy' issue. When I explained the problem, this is what she said:

"(paraphrase)... Well, of course he needs you there! For him, you are his interpreter in a confusing world where he doesn't know how to express his needs or concerns. You provide information and understanding, and he trusts that you ... trusts YOU....will help him. No one else will be able to do what you can for him, and no one can be as effective as you for making the changes in communication he needs. He knows this, and so do you. That is what your gut is saying..."

I like her. We might have to switch therapists again... dang it.

Pia

Viva La Different

Dan called me at work tonight with a cute story about J-man. Cute and kinda sad.

.

We are still in the process of meeting our neighbors. Tonight my hubby took J-man outside in the front yard and our neighbors across the street were out with their two-year-old boy. Up until this point we have only done the ‘wave and smile’ with these folks.

The little boy came up and said ‘Hi’ to J-man… how very appropriate. And J-man… being J-man… basically ignored the little boy’s existence and ran around. Dan took J-man to the little boy and tried to get him to say hi. J-man finally noticed the boy and…instead of saying ‘hi’ of course… leaned into the boy and gave him a J-man Kiss. (The J-man Kiss is a pursed-lip-lean-into-you kiss. No slobber involved.)

How cute is THAT?!

Apparently, the mom did not think it was that cute. Dan said she seemed a little freaked out. She hustled her little boy away with a‘nice to meet you’.

Hmmm… I guess we won’t be invited for a playdate?

Perspective

Today a friend from work lost her sixteen month old son in a tragic accident. Wrapped up in a cord from some blinds, he couldn't breathe and lost consciousness. She did CPR and he was rushed to the PICU, but it was too late and today he went on to meet God.

For all of our struggles, I have Jonathan to hold. To kiss. To laugh with and cry with.

I cannot possibly imagine the pain and grief she is going through today. And no doubt the days, weeks, years to come. My heart cries for her.

The idea of being without Jonathan is unfathomable to me. I think it would break me in two. So today I am reminded that for all of our struggles, we have him and the joy he brings.

Appreciate your children today. Hug and love them.

Pia

Different

Occassionally I am reminded: Jonathan is Different.

This week we had guests. Good friends with three children, ages 11, 6, and 3. Their youngest boy (3) also has some developmental delays, similar in many ways to Jonathan. And yet different. Nevertheless, despite having a household crammed with kids and toys and craziness, it was a wonderful week. Jonathan glittered with excitement as the week went on. Strangely, the two boys got on really well... which is great for two children with language issues and developmental delays. And the older children were wonderful with Jonathan as well... treating him like a sibling and playmate.

For me, it was wonderful having my friend here. Of course, just having a friend to pal around with was awesome. But there was something very comforting about having another mom around who gets it. Really gets it. And she gets Jonathan... no strange looks or pitying glances. Or avoidance of us. Just pure acceptance and enjoyment of Jonathan for who he is (and let me just say... Jonathan is delightful. No bias at all!).

Today they left to stay with some family on their trip. And the house is pretty quiet. When Jonathan got up from his nap he walked from room to room looking for the kids. I think we both felt a little lost.

So I decided we needed to get back into our routine. We packed up the stroller and headed to Jonathan's favorite place...the park. A dad and his two little boys were already there. The oldest boy... who was also 2 1/2 years old... ran up and said hi, asked for help up the slide, chatted up his dad, climbed all the way up the jungle gym to the top slide and went down with no help. He played rough and tumble with his daddy, and even tried to chat up Jonathan.

Jonathan just laughed. He was quiet most of the time, except to sign "Go" and "up" or to make his "Nnnnnnnnnnn" sound. He didn't respond to the boy, or to me really. He needed help up the slide and didn't climb up the jungle gym.

The boy's dad had a question in his eyes. He knew Jonathan was Different. It is starting to show... the differences between my boy and other children his age. When he was younger it wasn't necessarily apparent to the casual observer. But that is fading fast, and I am now struggling with Jonathan as Different.

Updates of a Completely Unrelated Nature

The last few weeks have been crazy with a Capital K.

Update #1: New House

We moved! We bought a house! We own a single-family home in suburbia! And yes, we still own the townhouse, a situation that fills me both with dread and freak-out-ed-ness. The decision was made to rent out the townhouse for a few years until (hopefully) the market improves (or we save enough money) to sell it. But we shall see… who knows what the next years shall bring us!?

In the meantime, I have decided to be in love with our new house. And I am totally in love. The view is lovely (lots of green and trees) and the space is perfect. We are sllllooowwly settling in. Jonathan loves it too… big back yard and lots of room to run. He drags me to the door constantly to go outside.

Update # 2: More and Go

We officially have TWO signs now: More and Go. ‘More’ has turned into the sign Jonathan uses for everything he wants. EVERYTHING. Which I had been warned about… that kiddos will default to the “more” sign when they want things. But that is ok. Intentional communication, even if it is simple, is better than nothing at all.

“Go” started and picked up speed almost immediately! Generally, it is preceded by my prompt of “Ready-Set-…” , but not always! Occasionally he will give the sign “Go” when mom is just too darn slow for his taste. The other day at the park Jonathan pushed me towards the swings and wanted me to sit on one. I did, and he signed “GO”. So I started swinging and he laughed and laughed.

HOORAY!

Update #3: The Response to the Letter

Because many of you have emailed me wanting an update to our Speech/OT Clinics response to The Letter, I thought I would pass it on.

Essentially, we never heard from them.

So, last week… my ‘pair’ being shy…. I sic-ed Dan on them. Dan called the clinic and spoke with M. He asked her if she received the email and wanted to talk to her about it. He told me later he got the distinct impression she was reading it as they were speaking. Anyway, the sum total of the discussion was that their position was that too many families were canceling and they needed to implement a tough policy. She stated that this policy was for more ‘problem’ families, but they needed a blanket policy to address it. Dan explained our position AGAIN, but she wouldn’t budge. So basically Dan told her that was fine, but as soon as this policy gets to be a problem for us we will start shopping for new services elsewhere.

Suddenly she budged. A little. Not wanting to lose business, I am sure, she asked us to please please talk to her if it became a problem and something could be worked out. Ahh-haaa…

I feel for the families who don’t know they can challenge policies like this. I feel like, in any other business, if there is a policy that in unreasonable the customer can easily say ‘Screw you” and go elsewhere. But when you are dealing with children (special needs or not), the game changes. And when it comes to therapy… which I believe the relationship between child and therapist is very important… you just don’t want to uproot the child. So I think parents are inclined to suck it up and not make waves. I say… MAKE WAVES!!! I don’t want to take him out of therapy, but I will challenge this policy.

Pia