August 2011 - Journeying Outside My Box

The Kindness of a Stranger

August 25, 2024 By Rebekah 0

On Monday, Tim stayed home for the day in order to go to Picasso’s appointment with the developmental pediatrician. I decided to take advantage of having him home & had set aside time to get my hair trimmed in the morning.

The lady who was trimming my hair asked about my family: work? kids? We talked about the choice Tim & I made to homeschool our children and why we were doing that. I explained about Mozart’s love of learning & Picasso’s issues, and that the schooling option allowed them to work at their own pace. It turned out that she has some family members with issues similar to Picasso’s so she understood where we were coming from. I mentioned that I’d been able to come get my hair cut, by myself, since Tim was home that day, due to our appointment for Picasso.

We had a nice chat, she was very friendly, and as I was just in for a quick trim, our time to talk was short. She wished me well in our appointment, and expressed hope that we could find answers to continue helping our son.

This morning, while finishing up at the eye doctor with Mozart, my phone rang. As I did not recognize the number, I let it go to voicemail, as we were just about ready to walk out the door. Instead of listening to the voicemail, I just hit the redial button to return the call. I didn’t understand the person who answered the phone - AT ALL. I will say they were speaking English, just too quickly for me to understand. I explained that I’d just missed a call from someone there, and the voice replied, “Oh, I think it was Jackie. Hold on just a minute.”

I know one Jackie - she lives in Florida & the number that the call came from was a Pennsylvania number. “Jackie” came on the phone and was saying, “I hope you don’t think I’m intrusive for calling, but…” and explained why she was calling. I had to ask her who she was - and when she told me she’d cut my hair Monday, of course I immediately remembered.

Jackie, who I do not know except for the hair cut, was calling ME to check up on how things went for Picasso at his appointment Monday afternoon. I was floored - almost in tears. Honestly, my phone does NOT ring with people calling to check up on us, with the exception of our parents and one other friend. Ever. The fact that a total stranger went out of her way to check up on me completely made my day.

She has kids - a little older than mine, if I remember correctly. She told me today that she is 1 of 6 children, 4 of whom struggle with dyslexia. She said what I am finding to be true: “People don’t understand what a struggle it is when you’re dealing with disabilities.” That’s especially true when people “appear” normal. She assured me that she understood, personally, what a struggle each day can be, and she wanted to call and make sure we knew she was thinking of us.

Reminds me of lyrics to an old song that I listened to, years ago:

“Take My Hand”
by Russ Taff

You know we’re all taught to be strong

We’re all taught to stand on our own

But it helps to have somebody

To hold on to

We’re all on the same journey

To find the way home

And I think we need each other

If we’re gonna get through

Why don’t you

Take my hand

And let’s walk together

It’s a long road

But we can walk it together

Life’s the greatest gift He gave

And I want to share it with You

Walk with me

This really challenged me to continue supporting people when I know of a need. It means the world to the one being supported!

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Filed Under: autism spectrum diagnosis, gratitude and appreciation, homeschool family

It’s Official . . . Journey to a Diagnosis

August 22, 2024 By Rebekah 4

Today we met with a developmental pediatrician from St. Christopher’s Hospital for Children. She had a lot of questions, spent some time with our son, and ultimately decided what we’ve suspected for a long time.

Picasso has Asperger Syndrome.

Due to all the testings and evaluations he’s had completed, we were able to submit a (FULL!) packet of paperwork to the pediatrician, for her to read through before she even saw us. Today’s visit was time spent talking with Picasso, time spent asking us a wide variety of questions, and time spent observing him while we talked. The appointment, combined with all of the reports she had on him, led her to feel confident in discussing her decision with us.

As we discussed what we’re already doing to help him, she said that most of those (the therapies) were things she would suggest anyway, so we’re already ahead of the game. She did give us a few more suggestions, which we knew we needed to do, but just hadn’t had an opportunity to do so, yet.

Realistically, we have questioned Picasso’s quirks all his life, but especially since about 16 months old, and really, to as far back as 7 months old. We have always had Asperger’s in the back of our mind, but could not gain traction in getting a diagnosis until this point. We pursued the actual acquisition of a diagnosis to make sure that we are doing ALL we can for our son - we would do this for any of our children. This does not change much for us, or for him, but will require more focus as to how we specifically help him.

At the same time, there is a definite pause in our day as we greet our new reality, by name. We knew this was possible, even probable, and yet now that it’s here, it’s a little tough to face. There is momentary sadness, and we allow ourselves this small moment in time to grieve our reality, knowing that we are now one family out of many who struggle with a spectrum disorder.

But there is hope and there are ways to work through this with him. There is family, there are friends, and there is love! And today, there was ice cream - his request, after a 2-hour appointment. We couldn’t say no to him, not today.

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Filed Under: autism spectrum diagnosis

How Long Does It Take? As Long As It Needs To Take.

August 17, 2024 By Rebekah 0

At the end of March, I called the Developmental Pediatrics department at St. Christopher’s Hospital for Children. I was told 6-9 months to get Picasso in for an appointment. I was a little shocked by the amount of time it would take to be seen, but this was an appointment we needed, and so we moved forward.

Our appointment is scheduled for Monday, August 22nd, at 12:45pm. This will be to hopefully determine whether or not Picasso has a spectrum disorder or any other developmental disorder.

Most people think of scheduling an appointment as calling the office and setting up an appointment. Not so for this appointment for Picasso. Here’s a list of what led to this appointment.

*Behavioral quirks (first 6yrs of life)
*Annual pediatrician visit trying to explain that something is “off” about our son.
*Occupational Therapy evaluation stating Picasso has sensory issues (at 5yrs 9mos old)
*Approx 50 hours of Occupational Therapy (March 2010-March 2011)
*Request for evaluation and approx 2 hours of paperwork (at 6yrs 6mos old)
*3 evaluations at 2-4 hours each (approx 10 hrs)
*Team meeting with evaluation team (2 hrs)
*Appt with regular pediatrician and recommendation of developmental pediatrician (1 hr)
*Phone call to St. Christopher’s Hospital for Children & subsequent paperwork (2 hrs)
*IEP meeting (1 hr, with about 1 hour of prep from therapists)
*Approx 32 hours of therapy - Speech Therapy (16hrs) & Social Skills Training (16 hrs)
*20 more hours of Occupational Therapy
*30 minutes of phone calls to St. Chris & to our pediatrician re: this appt.
>>Drive times are not included<<

All of THAT has been necessary to get to this ONE appointment.

Why?

Because Picasso has a “hidden” disorder - the sensory issues. He LOOKS completely normal when you see him - perfectly formed, no outstanding features that would indicate any impairment. But he struggles and we’ve had to spend our time proving that to people. As a result, it’s taken this long to get to this appointment. You can read more about Sensory Issues at this website.

Do we hope for a diagnosis? Is there a right way to answer that question?
No, we don’t want anything additional with which our son needs to struggle.
Yes, because it would explain a lot more of his behaviors & we could possibly get more services for helping him.

If we say “No, we don’t hope for a diagnosis,” then why go to the trouble of this appointment? We could live in ignorant bliss and move on with life.
If we say “Yes, we hope for a diagnosis,” someone might think we’re bad parents trying to label the things that seem wrong with our child.

We hope for answers, in whatever form they come to us - as a diagnosis, as no diagnosis, as continued appointments. We hope for answers.

How long will we take to get the answers we need to help our child? As long as it takes.

Taken the day he had his first OT eval done - 2010.

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Filed Under: autism spectrum diagnosis, sensory issues

Sometimes, Just Because…

August 11, 2024 By Rebekah 0

I’m taking time today to say thanks to my wonderful husband! He is my partner and a great source of support in this amazing journey that is our life together.

Here are some of the reasons I’m thankful for him…

Because he genuinely enjoys spending time with the kids.

Because he’s “SuperDad” who rescued the rocket at the birthday party…thanks to some help from another super dad!

Because he’s never been afraid to help with the kids, even when they were little.

Because that smile says it all.

Because he engages the kids in fun activities & great conversations.

Because polishing her nails doesn’t frighten him!

Because he has TIME.

Because he loves science and history and will answer all the questions the kids can ask!

Because he’s always there to lend a helping hand.

Thanks, Tim, for all your help, support and love!

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Filed Under: gratitude and appreciation

Shoe Shopping

August 9, 2024 By Rebekah 1

‘Tis that time of year - time for back-to-school shoe shopping. I was feeling brave and decided I could tackle this job on my own - and I was right! Sometimes I’ll take the kids one at a time when I’m out for different errands, but today, this was really the only thing on my list that I needed to get done.

The kids are 11, 7, and almost 5 (because it’s important that we say it that way now). My daughter usually is tricky to shop for as she wants every shoe - pink, silver, ones with characters, ones without, fancy ones, plain ones, ones for winter, ones for summer (despite that we’re shopping for shoes at the end of summer). She’s quite particular! It’s interesting to see what qualities she does or doesn’t like in a shoe, and why. For example, right now (and for the past year) she’s preferred shoes that have some strap to keep them on her feet better. No problem. Today she wanted to try ones without straps and immediately I could tell by her face that we would not be buying those shoes - it seems she likes the security of a strap on her shoe better than no strap (even if it’s a dress shoe that goes all the way around her foot).

My 11-year old son is at the point where once he goes up half a size, he’ll be at the end of kids’ sizes and the beginning of men’s sizes. The sales lady was kind enough to inform me that with that jump from kids’ sizes to men’s sizes, even though the shoes are the same SIZE, there is usually at least a $20 difference in price. It’s good to at least have that in mind, I guess, as he continues to grow…and grow…and grow…. He’s pretty easy to buy for - shopping for his shoes is never a chore.

My 7-year old is the hardest to shop for, when it comes to shoes. The other kids tried on 3-5 pairs. This guy tried on about 10 pairs. He didn’t understand why he should try on BOTH shoes if one shoe felt good - until he tried on the same style but with half a size difference. All of a sudden it clicked that some shoes definitely feel better than others. He has sensory issues and is particular about every article of clothing/footwear that goes on his body. So many of the shoes, despite the fact that they fit, were cast aside because they did not “feel” okay. I get that, and I’m all right with that because he has to wear them, and if they don’t feel good there at the store, I’m sure not going to be able to get him to wear them once we come home. To his credit, he was well-behaved, did not have a meltdown, did not run around the store, and did not mess up the boxes of shoes!

All the kids have new shoes, they all chose their own shoes, and we did it without any major incidents!

Some of the shoes we bought today (and in case my dad reads this, yes, we bought both left & right shoes!)

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Filed Under: sensory issues

Getting Monday Started

August 8, 2024 By Rebekah 0

Good Morning,

It is Monday & it’s starting a little slowly at my house. I find I’m always a little more focused and grounded when I remember my blessings, so here’s a small list.

Tim & I had a great outing to the Philadelphia Art Museum for our anniversary!

We saw an exhibit called “Rembrandt and the Face of Jesus” while at the Art Museum.
This is one of my favorites (and this is a picture of a postcard, not the actual art work).

The kids got to spend some time at my parents’ pool this weekend - 3 fish!

Today, we have nothing planned. We’re taking it slow to give everyone some time to unwind from a busy weekend, and to prepare for a slightly busy week. A second cup of coffee was in order this morning!

This morning, I am having coffee with Renoir.

My kids are playing Dino Monopoly together, happily!

For the next few weeks, we get a break from therapy! In fact, we don’t go back for another session until early September! It’s hard to believe we’re that far into the year!

Picasso with one of his favorite therapists

These are just a few of the things I hope to remember as I enjoy this day. This month, I have some time to work on other projects as well, and I’m grateful for that as it affords me opportunity to exercise a few other parts of my brain. Before I know it, school will be starting. Until then, I plan to enjoy this non-scheduled time with my kids.

Happy Monday!

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Filed Under: daily blessings, inspiration and motivation

Wisdom from the Fortune Cookie

August 5, 2024 By Rebekah 0

Tim & I were having a late-night dinner. We had been to pick up the van from the dealer.

Dinner was great & the fortune cookie was a nice little ending to the meal. The quote inside the cookie was, “Man knows more than he understands.” Just on first thought, I think I agree with that, when you consider the scope of all the things we cannot understand - for me, anyway.

Then I thought a little more - man knows more than he understands. Thinking about Picasso. Completely true. He knows, mentally KNOWS, much more than he’s able to understand right now. He does not understand social interactions. He does not understand how to help his own body become stronger. He does not understand that his actions have an effect on others - to name just a few things.

But he KNOWS a lot of things - academic subjects, how to read, how to write, how to use his scooter, how to build amazing Lego creations, how to transform a tricky Transformer with which his dad & brother struggle, how to draw, how to take care of the dogs, how to perform basic self-care skills.

The struggle for me is to help others realize this aspect of his life. Because he is so intelligent and so very able in many areas, people expect that he’s capable in all areas. Wrong. And highly distressing to him when people expect him to be capable in all areas.

He KNOWS more than he UNDERSTANDS

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Filed Under: autism spectrum diagnosis

Communication

August 1, 2024 By Rebekah 0

Life with special needs requires a lot of communication. I wanted to illustrate this for you.

In the past 10 days, here are SOME of the people with whom I’ve been in communication - via email, phone, or face to face. I will note that this list is probably not all-inclusive because I’m not trying to remember specifically, just generally, to give you an idea.

*Hospital outpatient check-in receptionist
*Ultrasound technician in Cardiology
*Pediatrician
*Therapists
*Dentist
*Different technician in Cardiology
*My parents
*Several moms who have traveled down our road (sensory issues, autism spectrum issues)
*Several friends
*Insurance company
*Someone in Biostatistics
*Tim’s parents
*Our Pastor
*Tech support

Meanwhile, we’re waiting on echo cardiogram results for our older son. The report from the nurse at our pediatrician today is that the reports that need to be faxed down to CHOP have been…..lost. I’m hoping the nurse calls back with different news in a little bit.

On top of all of this is regular life.

I’d like to take a minute to thank those who have been supportive through all this. Honestly, it’s a long and often lonely road and the support and encouragement from friends comes few and far between. It’s really a blessing to have supportive family because you know very regularly that you have someone in your corner when you spend (sometimes) hours a day scheduling appointments & following up on all sorts of things you never thought you’d be dealing with.

So if you know a family who deals with special needs, drop them a note or give them a call. I can promise you it will make their day! You don’t have to chat long or write much, but it will help them remember they’re not alone!