July 2011 - Journeying Outside My Box

Avoiding the Emergency Room

July 31, 2024 By Rebekah 1

Our dear Picasso, with all the, um, excitement that he creates in our lives, has managed to avoid the Emergency Room. Don’t ask me how! We’ve never had to take Mozart, but our Princess has had to go twice. There have been numerous times that I’ve been surprised at the lack of injury when Picasso’s been hurt.

Tonight was another close call - but again, we were fortunate enough to avoid a trip to the ER. He was playing with a toy that’s on a necklace and was spinning it. The toy has a bit of a sharp edge, and he said it poked his eye. It definitely looks like there’s a scratch there, but I have limited experience in eye injuries (thankfully!). I called the After Hours line and they said we’re safe to wait until tomorrow, but to definitely give the doctor a call as they’ll want to check his vision. So, that will be another appointment to schedule for tomorrow, for after therapy.

So while he creates excitement, I’m once again reminded that it could be so much worse. Perspective matters!!

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Filed Under: autism spectrum diagnosis, parenting

Friday at home

July 29, 2024 By Rebekah 0

Today is the end of a long week - appointments, research, reading, driving, mechanic. We dropped Tim off at work today, as his car is getting new tires. I was going to take the kids and run some errands, but we decided to come home instead.

Everyone’s feeling the strain of the last few weeks - the therapy intensive and additional appointments, along with regular life. Tomorrow there are things scheduled as well - including some fun!

So today, we are HOME. The kids & I have spent time playing with toys, reading, watching a little tv, having some fun (healthy!) snacks, and generally just NOT going anywhere. When travel & schedules are the norm, it’s important to enjoy the down time - sometimes, to even schedule it in (and sometimes, we do that in PEN)!

Hope you all enjoy your weekend!

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Catching Up

July 26, 2024 By Rebekah 0

Good morning! Today it’s back to some real normal stuff in our home - and I could not be happier!

Picasso’s second therapy intensive is finished! Today there are dental appointments, tomorrow there’s a make-up therapy session. (Our sweet Princess asked if that meant learning how to put on make-up…no, but that’s cute!) We have to get new tires for Tim’s car and get them put on, then on Saturday there’s a birthday party that Mozart will attend, and therapy for Picasso.

Meanwhile, the laundry beckons, the kitchen needs a good cleaning, I need to follow up on a few projects that need finished, there is always reading and more research to be done. Mostly, though, I’m going to enjoy NOT having to drive 2 hours each day

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A Road Less Traveled

July 24, 2024 By Rebekah 0

While Picasso has therapy, I usually sit in the waiting room to wait the hour or two until he’s finished. If I have kids along, they wait with me. We read, color, play tea party - fun, quiet things like that. This time in the waiting room allows for some good conversation with other parents. I’ve had some interesting chats with people about their children, how they came to discover their child’s special needs, what they’ve done to try to benefit their children, things like that. One man told of moving his family some great distance, while knowing nothing of the area, because he was able to find a school district that was exceptionally large. According to someone they knew, the larger school district would offer more services for their son. It’s amazing the stories people will tell when they get a chance to speak in a safe setting.

This week, I had a chance to speak with another mom with whom I’ve had some conversations in the past. Unfortunaetly, her story is so sad. However, she’s found some hope by changing the school plan and that has done wonders for her child.

She suggested we research a different, less-known avenue in thinking about our son’s needs. Ultimately, I don’t know if this will be anything that will apply to us, but it certainly warrants a look. It’s called Cerebral Folate Deficiency. I’m sharing that with you so that if you have others in your life who are on the autism spectrum, you can share this with them.

I’ll take a brief moment to insert a disclaimer here: Please DO NOT try to do research FOR another family unless they specifically ask you to help them. Feel free to share this post with them, and ask if they’ve heard of Cerebral Folate Deficiency, but do not research FOR them. Parents of children with special needs value your respect, not your opinion or advice.

One of the wonders of special needs parenting is that usually, you will find that if people have information on a certain topic, they are happy to share. Usually that means they have spent hours reading and researching for their family’s benefit. There is a world of information about many different types of special needs, that is accessible to everyone; yet on certain topics there is really such a small amount of available information - usually because enough research hasn’t been done yet. That’s why you ask - and ask - until you come across someone who has read and studied the topic you’re researching.

A special thanks to some friends who have already shared some information with me, and to a couple of friends who are sharing time by way of phone calls and emails, to share what they know about CFD. Just this weekend, I’ve looked through hundreds of pages - our guy’s evaluation results compared to the information I have obtained on CFD. A few things jumped out at me:

I felt like I needed an interpreter - the brain is fascinating, as is the study of functions of the brain, but it’s been quite some time since I’ve done an in-depth look at this organ!
I’m in awe of how intricately our bodies are formed - and that a loving God took care to fashion us all so similarly (having the same organs, limbs, senses), yet so uniquely!

“If God loves us, why do seemingly tragic things happen to people?” (i.e. Autism) My best answer: I don’t know. I can tell you that whatever our son’s issues ultimately are, there have been days that the issues have challenged me to my core (and I realize that there are others who struggle with much more severe issues). There have been times that we’ve been blessed with insight into our son’s life - from family, therapists, doctors, friends. There have been times that we have questioned just about everything in our lives, trying to find how best to help our son, and how best to cope in the midst of some tough situations.

Ultimately, I think God gives us the specific children we have, to help us grow. What do I mean by that? I’m a person who likes to live life “inside the box” where things are neat & orderly, where there’s an answer to every question, where all of life fits in a tidy, organized way. There have been people who have challenged this part of my personality. For the most part, I’ve been able to use my “life-inside-the-box” coping strategies to smooth out the rough edges where people have challenged me. However, along came my son, and in my own best efforts, I was not able to “smooth out the rough spots” in my relationship with him. He was constantly challenging everything about the way I liked life to run. Our pediatrician, an advocate for our family, but ultimately for my son’s health, told me in NO uncertain terms that this child would never - EVER - fit inside my box. No one had ever used those words, in that order, to basically tell me to get over myself. She would be the first to tell you that she was not questioning my abilities as a parent, or my love for my child. She was matter-of-factly stating the truth about my son.

I took it as a personal challenge - how much am I willing to change to meet my child’s needs? I’ll tell you that I’m still a work in progress. However, I no longer care what he wears to bed, what he sleeps on (sheets, blankets, sleeping bag, mattress pad), in what position he is to do his coloring. I’m trying to loosen up on which clothes he chooses (because with his sensory issues there’s usually a reason WHY he chooses certain things), whether or not he wears shoes to the car, whether his room is perfectly clean or not (his motor-planning issues cause problems with getting everything put away correctly).

The point is, though, that I would not likely make all these changes in my own life for just anyone. This child, along with our other two, have taught us things about ourselves that I don’t think we would have been willing to learn through any other avenue. It’s amazing how we end up with the children we do, and how God uses their lives to refine and enrich our lives!

We could walk the “easy” path (easy in my mind) and push for our son to comply to the way we like life to be. Ultimately, though, that would not be best for him. And so we walk ahead on the less-known road, letting go of some of our own “wants” (wanting things done “just so”) in order to have hands that are open to receive the blessings from our children!

The Road Not Taken

Two roads diverged in a yellow wood,
And sorry I could not travel both
And be one traveller, long I stood
And looked down one as far as I could
To where it bent in the undergrowth;

Then took the other, as just as fair,
And having perhaps the better claim,
Because it was grassy and wanted wear;
Though as for that the passing there
Had worn them really about the same,

And both that morning equally lay
In leaves no step had trodden black.
Oh, I kept the first for another day!
Yet knowing how way leads on to way,
I doubted if I should ever come back.

I shall be telling this with a sigh
Somewhere ages and ages hence:
Two roads diverged in a wood, and I-
I took the one less traveled by,
And that has made all the difference

…Robert Frost

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Always Grateful

July 21, 2024 By Rebekah 1

Yesterday was another tough day - I guess the good thing about these tough days is knowing that there WILL come a sweet day of rest and I’ll appreciate it even more after these few days!

Mozart had a meds check at the doctor yesterday. We’ve had ups & downs with his meds lately and discussed a plan with the doctor that will work for all of us. (Side note: I’ve commented on my love for Picasso’s dr. before and have to say I’m crazy about this dr., too! Love that we have pediatricians who LISTEN to us as the parents. We - parents - know our children best!) Mozart’s doctor recommended a test to make sure that the meds aren’t interfering with his system. So after getting home from the doctor yesterday morning, I spent almost an hour getting the appointment scheduled.

We have 5 appointments these next 2 days. We’re all tired. Very tired. The weekend will be a good time to rest and regroup. Even so, there’s no “day off” until next Wednesday (sort of) and next Thursday (definitely).

Yesterday, after Picasso’s session, I asked his therapist how he did. It’s tough when you hear the one who has had the most experience say, “Well, he’s definitely struggling….” I know that this is normal - what I don’t quite understand right now is why this intensive is so different from the other one. Yes, our schedule was a little different this time, but we had other things going on during our May intensive that caused that time to be tough as well. Even so, he’s struggling more this time.

On a more positive note, yesterday the therapist told us that while Picasso IS struggling right now, she also sees improvements in terms of self-regulation and ability to communicate his desires, which is a huge gain since his last intensive. That’s huge - to have both of those abilities appearing so strongly right now! This would be an easy time for many meltdowns and for life to really just come undone for Picasso (and consequently, for us). However, the self-regulation and communication are definite areas of growth that are POSITIVELY impacting his (and our!) quality of life! I am so proud!!

A couple nights ago, Tim was talking to Picasso about therapy - Picasso had been complaining about having to go, yet again, the next day. I loved Tim’s explanation of WHY we send Picasso to therapy.

Our bodies are built in certain ways - kind of like when you build something with Legos. There is no “right” or “wrong” way to make a Lego structure, but there are certainly some ways that are sturdier and more stable than other ways. It’s kind of the same with our brains - we can tell our bodies to do something, and our bodies will do it, and your way of doing it is not any better than someone else’s way of doing things. But with the Legos, if we rearrange some of them, sometimes we can make our Lego structure a little stronger.

It’s the same with our brains. This therapy is to help move a couple of the building blocks around inside your brain, in order to make your body function in a more stable manner - making the whole structure of your body stronger. Moving around a few pieces of Lego helps make a Lego creation stronger, and moving around a few things in your brain - retraining your brain - can help to make your entire body stronger, and that will absolutely help you!

I love that explanation - so simplistic for a 7-year old, and so much on his level, yet also intellectual enough for a child who really needs an explanation as to why he has to go to therapy! Well done, Tim!!

In all the ups & downs of this week, I’ve felt very defeated. It’s a major blow to a mother’s heart to hear, “He’s like a new kid!” and then less than a week later, to hear, “Unfortunately there’s been major regression….” Understand: I knew there would be regression. But when you’re working with a child with special needs, everything can change. I thought the change was that we were progressing more quickly than I could have dared to imagine. It seems the actual change was that he IS learning and growing well, but there are major setbacks in some areas.

Personally, I’m really struggling right now to understand just what is going on inside our little guy’s head. And that right there is such an important part to all of this: he’s still a little guy. This is not like dealing with an adult or even an older child who can explain their internal struggles. This is a child who cannot understand what is going on inside himself; or if he can, he’s not able to verbalize it. Yes, our son talks to us - a lot! But communication is a major struggle for him. In the day-to-day chit-chat, he excels! In being able to truly communicate his thoughts and feelings, he really struggles. So this is not a child who can say, “It hurts when I do that exercise” or “I have a headache because _____.” Consequently, we cannot help him with what’s going on because we just don’t know.

One of the main things that families with special needs face is isolation. Our lives are for our kids. If you’re unsure what that looks like, I can explain. It means that today, I’ve already managed 2 meltdowns, assessed 2 cuts, juggled schedules. It means that later we’ll be driving almost 2 hours for 1 hour of therapy, and then home to get everyone a brief rest and then some dinner. It also means that tomorrow I take 2 kids to grandparents on the way to the hospital for a test for Mozart at 10am, but we have to be there before to get registered. If the test is done in time then I can get the other 2 kids, and get everyone to the 1pm therapy appointment (means we have to be DONE at the hospital by 11:15am…let’s hope!). If we’re not done at the hospital, my parents will have to drive the other 2 kids to therapy. They’re actually going out of town for the weekend, and fortunately, therapy is actually sort of on their way, so it’s not a huge loss (hopefully) if they’re the ones who have to make the drive. Once we’re at therapy, we’re there for a 1-hour appointment. Originally, I thought our session was at 2pm, so I scheduled a make-up session at 4pm. Well, our session is at 1pm, and so when we’re done at 2pm, we’ll have to kill a couple hours down that way before the 4pm session. Tomorrow’s forecasted temperature is 103degrees. We’ll find something to do indoors. So the 4pm session will end at 5, and that will put us right in crazy Friday rush-hour traffic to drive home.

Yes, I could have scheduled the echocardiogram for a different time, but I’ve already had to delay scheduling it because of therapies, so now that our intensive is almost finished, I jumped at the first available time they could give me.

I’m tired. I’m a little frazzled. I’m struggling to make sense of everything right now. I need to buy bread - at least I can delegate that one!

But I am grateful. First and foremost, I want to be grateful - perspective matters! Tim & I have great kids! Wonderful kids! This morning I got an email from a friend and I’m clinging to her closing comment:

God has great things for you and your kids!!!

(Thanks, Melissa!!!)

ALWAYS GRATEFUL!

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Filed Under: gratitude and appreciation, regression, special needs therapy

Changing Times…

July 20, 2024 By Rebekah 0

Our oldest son is 11-years old. He has started attending the youth group at our church, and is doing things with the youth group more regularly. We are looking at sending him to a youth group at another local church as well. Due to all of Picasso’s issues, we’ve pulled all the kids out of most everything so that we can focus on therapy. We’ve got the schedule for therapy under our belts now and we’re trying to venture out a little more to meet the individual needs of each child, rather than just coping with the crisis need.

So Mozart is out a little more often with his friends. As a mom, I love that - I love feeling safe in sending him to youth group, I love that he’s making new friends, having an opportunity to do more fun things. It’s all wonderful - all but one thing. When I was in my teen years, it was easy to find a phone or borrow a phone, in order to call home if I needed to do so. These days? Have you seen a pay phone lately? I’ve seen 2 or 3 - at gas stations, on the highway.

So we’re sending our son out to activities and functions, but he needs a way to get in touch with us. Times are changing, and because you can’t find a pay phone anymore (my younger kids may not even know what that is!), and because I need to know that our son can call or text us if he needs us, today, we bought him a phone.

The phone is nothing spectacular, but you should have seen his face! It took a minute for it to click when we were explaining that if he was going out he needed to be able to contact us. I think he thought we might make him start staying home because he knew he didn’t have a way to get in touch with us. Then, the words, “…and so we got you…” pause … click - lights go on… “You GOT ME a PHONE?” Yes, we got you a phone!

To be honest, it sort of pains me that at age 11, my son almost HAS to have a phone. That’s our society today. On the other hand, there are great (cheap) options for a first phone, so I’m thankful for that!

With privilege comes responsibility, and as he is earning the privilege, he is earning the responsibility as well. He will have to pay half of the bill each month (which isn’t much when we - probably like you - have a $10/month add-a-line feature in our plan). On the other hand, it’s good to start small and watch him succeed at that in order to build to bigger responsibilities that will come his way.

And, to be clear: No, you can’t have his number.

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Filed Under: parenting

In Search of Normal

July 19, 2024 By Rebekah 0

We had a tough day yesterday - with a big heap of blessing at the end! I’m so grateful for the blessing because it really kind of kicked me out of my mental rut where I was spinning my wheels looking for traction. Still, it was a tough day.

Today I woke up feeling the effects of having struggled to find answers all day yesterday. I am tired. But - it’s a new day! I’m working to get myself back on a normal path and do normal things to offset the stress of yesterday. So I wanted to write today about two of the most normal things in my life - two of the most normal people in my life. There are many things in my life that are well-planned, routine and can be counted on because that’s how it has to be for Picasso. But today, it’s time to focus on the two amazing blessings that are our other children!

Our oldest son is 11-years old, and how time flies! He’s been taking piano lessons for over 3 years now and has been blessed with quite a talent in that area! We took off most of the summer from piano lessons, due to Picasso’s therapy sessions. However, we got a very special phone call last night, and we’ll be resuming lessons mid-August.

During the school year lessons, he’s only missed one lesson due to sickness. I really think the piano lessons are a highlight of his young life! Tim & I fully intend to make sure he continues with piano lessons for a long time. I know there are those who say not to force the kids into music, and I know there are those who make their kids practice long hours. But honestly, when you’ve been blessed with an amazing talent, sometimes you need to work to develop that God-given ability. That’s where we fall - helping him to develop this ability. It’s tough at times, but not very often. Here’s a rough idea of how much he loves to practice: Let’s say he’s practiced about 1,000 days (give or take). In those days, we’ve had fewer than 20 days where he has NOT wanted to practice. So approximately 98% of the time, we have no problems getting him to practice - that amazes me! He has a wonderful teacher and she is able to challenge him in ways that we cannot. He is self-motivated in almost every area of his life. I can’t begin to tell you how AWESOME that is!

We call him Mozart (around the house, too, not just on this blog) because he has such a dedication to music, and such a desire to do and be his best. He has an ability to feel the music that you just don’t see everyday. There are times that I’ve stood in the kitchen, listening to him practice out in the other room, and have just been in awe of the musician in my home, only to remember that our son is that musician! You can read more about his music here.

Besides music, he does love a lot of other things: reading (books that I’ll probably never read!), making art (drawing, crafting, clay sculptures), playing video games, watching movies. When I take the kids to the library, we come home with so many new and different books - easily 40 or 50 at a time. In the 3 weeks before they’re due, we read through all those books! Reading is a big part of all of our lives! When Mozart was 8 1/2, he read through the entire Lord of the Rings trilogy and loved it…and understood it! Books will always be the “6th member” of our family!

Our sweet Princess…she’s almost 5 (in September). I think she grows a little every night because she seems so much taller now! What do I love about her? Everything. I adore my children! Before she was born, one of the names we’d considered for her was Elizabeth, and I wanted to call her Ellie. Someone pointed out that our son & daughter would have really similar names, and that would be fun if they were twins, but maybe not so much if they were there own person. While I LOVE the name we’ve chosen for her, there are times that I wish we’d considered Ellie just a little more. With our son’s delays, he is developmentally younger than his chronological age of 7. He and our daughter are best friends and at this point in life it would be really sweet, at this point in life, to have them with such similar names. I’m sure it won’t always be that way, and I’m still in love with her OWN precious name - it’s just interesting to think about this!

What else - she loves to play dress-up! Every day there’s a different reason to dress up - of course there is; why shouldn’t there be! :) The funniest part of her dress-up is that as frilly as she may be at any minute, and no matter what play scheme is going on (tea party, or ballet, for example) there is always some “boyish” something involved. What I mean is that if she’s carrying a purse, there’s likely a truck in it. Or if she’s having a tea party, there are likely some Lego or Playmobil guys in attendance (and that’s NOT because she lacks stuffed animals…more pink & purple stuffed animals than I even knew existed!).

She loves pink, and purple is okay, too. She loves pink so much that when I’m out shopping for her birthday or Christmas gift with the boys, they’ll say, “Mom, you know it needs to be pink…or purple if we can’t find pink.” They’re absolutely right! Even the receptionist at Picasso’s therapy comments on her pink! On the rare day when she has NO pink on, the receptionist comments on the lack of pink. She loves pink!

Her hair - I love her hair! I know: pride, vanity and all that. It’s not like that. I just really love her hair! It grows so quickly, and it’s so full, and when it’s humid out, her hair curls in these great ringlets around her face! She loves that I can do all sorts of things with her hair because it’s so long (although, she’s usually too busy playing with one of her brothers to want to wait for me to do her hair!).

So today, I will celebrate all this normalcy! I don’t know what the rest of today will hold, but I can tell you that I hold the hand of normal every single day!

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Filed Under: family focused

Regression…A Tough Day

July 18, 2024 By Rebekah 0

Today was a tough day for our son with SPD (sensory processing disorder). He receives OT that our home school program pays for, but it’s not a weekly session. Rather, it’s in 10-day therapy intensives that kind of “shock his system” and help to retrain him. He receives these 10-day sessions once per school quarter, and once during the 6-week Extended School Year program.

His first intensive was in May, and we had some ups & downs - for which the therapists had prepared us. Emotions were a little messy at times. He was withdrawn a few times, and at other times he was seeking out much more sensory input than he normally does. As we began this particular therapy intensive, we were prepared for more of the same, but hopefully to a lesser extent as he’d already been through one of these intensives.

During his first week of this therapy intensive, we also had vacation bible school at our church. We had the mornings to get things done around the house, then grab a quick (and early) lunch, head out to therapy in the early afternoon, then drive home. My younger 2 kids (including our 7-yr old special needs son) got a nap a little later than usual. We’d get up from naps, grab a quick bite to eat and head out to church for vacation bible school. We did not get home until about 9:30 each night (sometimes a little later). My kids did not really sleep in that week, like I thought they might. So - regular wake up times, later nap times, later bed times, vacation bible school, later bed times. They seemed to be managing really well, though, and I was hopeful that some of the emotions and stress we’d seen during the first intensive, in May, might bypass us this round.

Wrong.

Very wrong.

Last week, his therapist reported, “This is a totally different kid…so much different than the boy who was in here 2 months ago! All sensory defensiveness is gone; he met an IEP goal.” My husband & I were thrilled - we see progress almost daily in speech, social skills, and sensory issues. Of course he was progressing well!

Today, the same therapist reported, “Major regression - at least back to the same level as before beginning his intensive 2 months ago.” She went on to tell me that she was not able to get anything done with him today, due to his non-compliance. He would speak, but it was off-topic, and while it was intelligible, it made no sense in regards to whatever they were talking about.

He went from his OT session into a speech session. I informed his speech therapist of the very poor hour he’d just had. About 50 minutes into his 60-minute speech session, he came running out to the waiting room. I asked if he was finished, because this was very unusual for him. He told me that he was given free time. I was certain that free time was a possibility, but thought that it was free time to be spent in the therapy room, which ended up being the case. His therapist came out looking for him - apparently he’d run off. I had to carry him back to the therapy room as he would not go willingly. He started throwing things at the speech therapist, who informed me that most of his session was fine - this was completely opposite of how he’d behaved for most of the hour.

He would not put his shoes on. He would not comply and gather his things to go home. He would not answer my questions because I said “No talking for 5 minutes”. When I told him it was okay to answer my questions, he would talk about things that had nothing to do with my question.

WHAT HAPPENED TO MY SON?!?!?!

After some panic on my part (does he need a CT scan? is something really wrong inside that he’s making no sense?), I made a few phone calls. The first was to my mom because moms are supposed to have the answers to everything. The second was to a trusted friend who understands our issues with our son because she has seen a lot of the same issues with a different child.

We all agreed - most likely my son is just overly tired, despite seeming to handle his first week of therapy and vbs quite well. He’s probably exhausted all his usual options for getting out of something he doesn’t want to do. Because of his exhaustion, he’s probably got a lot of sensory defensiveness today, and that came out with the therapist who is not his favorite. Several times while Picasso and I were talking today, he would say, “Never mind.” That’s my clue that whatever he’s trying to tell me is too complicated for him to explain - for one reason or another. Whatever he was trying to talk about, as disconnected as it seemed, must have been connected in some manner, but it was too much for him to work the connection out in his mind, and then explain it to me.

He’s a good kid - he’s a great kid! My husband & I are blessed with 3 wonderful kids - my heart is full! I’m exhausted, though, after spending the day worrying over my guy’s issues and trying to determine if this necessitates medical intervention, or just more rest. Most of the time, he just needs more rest, but these were behaviors we haven’t seen. This made no sense today and so we hope that he just needs more rest. Even so, it’s really hard to get a child with sensory issues to get more rest. Their minds are racing with all the “what-if” and “how” and “why” and “when” and “where” questions that plague them. Their bodies have to keep up with their mind for them to achieve the balance that we feel when all is well. We cannot just say, “Calm your mind and you’ll be okay,” because they won’t. Their mind will continue to the point of exhausting their physical body, possibly to the point of becoming sick.

For now, we seem to have a handle on this. Tomorrow’s a new day, and I’m hopeful that we’ve reached a possible solution with him that will allow him to participate in his therapy and maybe even turn this corner to get back on track! I’m so glad my joy bank is full - helps to ease the stress of today.

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Filed Under: regression, sensory issues, special needs therapy

Back to Our Irregularly-Scheduled Life

July 17, 2024 By Rebekah 0

Our kids have attended 2 VBS’s (vacation Bible schools) this year. The first was at a local church, and was a full day program. I dropped the kids off at about 8:45am, and picked them up at 3pm for that week. Our 2 boys attended a couple years ago, and our daughter hadn’t been old enough to attend before this year.

The full-day VBS was a tough decision. I knew our older son would be fine, but I was only moderately sure about Picasso & our Princess. He has issues, and she’s only 4 years old. But, after a full year of home-schooling, I really wanted to see how they would do and how Picasso would manage a full day at a location he’s only sort of familiar with, with people he did not know.

What came of that week? For our older son - a lot of fun, making new friends, having a lot of fun! For our daughter - new friends, great craft projects, and lots of fun! For Picasso, the child who seemed to completely defy me not too many years ago, there was the receipt of EVERY sticker that could be earned, bonus gift each day for earning all the stickers, compliments from his teacher, new friends, and lots of fun!

The second VBS that our kids attended was for about 3 hours each evening, at our church. We just finished the week with a VBS service today. Kids & families were invited to participate, and we had a big barbecue after church. This week of VBS worried me even more than the first one, because Picasso had his first week of a 2-week therapy intensive. That means that his systems are being re-trained and that can cause some emotional turbulence as well as physical exhaustion.

I did not volunteer to help with our church’s VBS because I wasn’t sure how our guy would do with the ups & downs from the therapy, that may hit at any time. A dear friend of mine was volunteering to be a crew leader and called to say that she’d asked for our son to be in her group. MUSIC TO MY EARS! I don’t know why I didn’t think of requesting her as his crew leader originally - temporary mental overload, I think, juggling the schedules to prepare for these weeks.

[Side note: I'll be writing a more detailed post for my friend, Shannon, in the days to come, about helping special needs kids adjust to VBS...or something along those lines. I'll let you know when it's posted (once I write it and send to her). She's got some great insight on helping special needs families, like ours, in a church setting.]

That being said, I did do some of my own preparation with Picasso, to help him prepare and adjust to the schedule for this week. I’m so thankful that he was placed in our friend’s group, though, as she has a very personal understanding of his issues. It’s really an amazing story, maybe another story for another time, but a huge blessing!

Our kids were definitely tired this week - 2 hours of driving to/from therapy each day, time at therapy, quick rests after therapy & before dinner, running to VBS, late nights…and they didn’t even really sleep in. We got a small reprieve this weekend in that Picasso’s Saturday therapist fell ill. It’s quite unfortunate for her as she has young kids and any parent can attest to how tough it is to be sick when you have small kids. However, it provided a much-needed break for our guy, and gave us time to unwind after the busy week. We also had some family time - a trip to the library for some books and DVDs.

The coming week will be a little less hectic, but there are a few appointments and other things added to the mix. Hopefully we’ll all get back on schedule - as irregular as it is right now - and have another successful week!

Look for some new posts this week - I have a good amount of time at therapy to think and plan in order to share a few more thoughts with you. Have a great week!

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Filed Under: special needs therapy

A Completely Different Kid!

July 13, 2024 By Rebekah 5

Yesterday was Picasso’s first day of his second occupational therapy intensive. His therapist is amazing, but she is not his favorite as she’s the one who had to do the initial 4-5 hour evaluation. I’m trying to help him move past that and it seems that yesterday was a success in that. I reminded him that it’s just 1 hour, and that he could do this.

I was prepared to hear all the usual “we still need to work on this” at the post-therapy summary. I know we have a long way to go still, but I also know we’re seeing a lot of good changes and I’m encouraged by that, and am hopeful!

The post-therapy summary went something like this:
1. GREAT attitude!
2. Remember how he was resistant to the tactile stimulation (meaning body brushing, massage, deep muscle stimulation)? Well, today he had no problem with it. (That’s HUGE for someone with sensory issues!)
3. He met an IEP goal!
4. His behavior, when needing redirected, was fine - no real probelms whatsoever. How is the home behavior? (SO much better than it used to be!)
5. He’s doing well in so many areas, is close to hitting another IEP goal, but we’ll monitor over the 10-day period, and of course continue working on this at the next therapy intensive as well.

and - my favorite:
6. He’s a COMPLETELY different kid, even since the last therapy intensive at the end of May, and certainly different than the boy I spent hours evaluating in January!

They were right - these therapy intensives make a HUGE difference in terms of regulating his systems and helping his mind to process in a new and different way! This is some great progress for our family! I’m hoping that since we’ve already had one therapy intensive, the emotional swing that comes from all of this input will be a little less than it was the last time. Additionally, because we already have one of these intensives under our belts, we know what to watch for in terms of things that will make it harder for him during these two weeks. We’re all learning!

I realize this is not the best picture - wish I’d been a few seats farther away from him. However, in my mind (as Mom), this is such a great picture! Middle of the baseball game, not at all bothered by what anyone might think - he’s just loving life!

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Filed Under: everyday success, special needs therapy

Avoiding the Emergency Room

Friday at home

Catching Up

A Road Less Traveled

The Road Not Taken

Always Grateful

Changing Times…

In Search of Normal

Regression…A Tough Day

Back to Our Irregularly-Scheduled Life

A Completely Different Kid!

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