Special Needs Family | Journeying Outside My Box

My Oxygen Mask

March 26, 2025 By Rebekah 11

A little over a year ago, I began purposely taking time for myself - wearing my “oxygen mask” so that I could be a better wife and mother to my family. I never would have guessed how tenaciously I would cling to this change.

It started with giving myself permission to finish my coffee…while it was still hot. That one, simple gesture worked so well and gave me the courage to try to make a few other changes in my life. It was the first step in moving past the shock of an actual diagnosis for our son and reclaiming my own spot in my own life.

A key element in catching my breath, putting on my oxygen mask, and appreciating my own value in life was to schedule free time for myself. As I made our family’s schedule each month, I was careful to keep some time open. Maybe it was once a week, maybe it was one weekend a month, maybe it was more sporadic, but that free time was soothing to my heart. In the beginning, I didn’t always know what to do with my time, so I would just sit and watch 30 minutes of TV. That was probably the best thing I could have done. It was mindless, yet the intentional choice of sitting down to rest helped me clear my head and regain some of myself.

Another change that falls into my “oxygen mask” category is that I learned to knit. I’m still just knitting scarves, but it’s amazing how therapeutic it is. My hands keep busy, my mind focuses on the knitting, and not on the many issues at hand. I now get together once a week to knit with some friends. Knitting, laughter, friends - the perfect combination!

When I stopped running - running to the next thing I was convinced I had to do, or running from my fear of failure - and was able to just be still, a wonderful thing happened. God showed up. No, that’s not true. He was always there. Rather, I started hearing Him more. My body was still, my head was still, and my heart was still. And in the stillness, I could hear God.

I could hear His wonderful reminders that I am fearfully and wonderfully made. I could hear that He knew and understood my fears, my frustrations, my shortcomings, my longing for something more. The wonderful thing about hearing God is that we hear someone who truly loves us - someone who wants to help us take care of ourselves so that we can care for those who need us. After all, He took time to go away to be by Himself while He was here on Earth. When we make time to stop and to be still, we can know that He is God (Psalm 46:10).

There are other changes that have happened and still others that I’m beginning to work on. This business of creating time for yourself in a world that so desperately wants to take our time is quite refreshing. Many times at church, we’ve used a phrase that has really gotten into my heart. We don’t want to be a church that does everything, yet does it half-heartedly because we feel so stretched. Rather, we want to be a church that does a few things and does them well. It’s the same in my life - I don’t want to do everything in life. For awhile, I thought I did, but I don’t. I want to do a few things and do them well. With excellence.

Resting - intentionally choosing to take time for myself - has helped me find more of what I want to do, and less of what I feel I need to do. The oxygen mask analogy - because as a parent, we have to take care of ourselves in order to help those who depend on us.

What intentional changes can you make in your own life, no matter how small, that will help you be refreshed and renewed as you care for others? How can you put on your oxygen mask to care for yourself before you care for others? Because you are worth it. You know that, don’t you? You - YOU - are worth it!

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Cast Party Wednesday blog link-up wednesday

Filed Under: intentional choices, my morning coffee, my oxygen mask, special needs family, writing Tagged With: oxygen mask, time for myself

Special Needs - Not Just Disabilities

March 8, 2025 By Rebekah 9

When someone says “special needs” many people - often, myself included - immediately assume a disability or a diagnosis. And quite often, we’re probably right. However, I often come back to this phrase and I keep on thinking - I think more broadly. Special needs are not *just* disabilities.

I’m a proponent for individualized education. I don’t mean an IEP; rather, I mean working with the student, at their level, rather than expecting that all kids in 4th grade are at the same level. (That’s probably why I gravitated toward Special Education in college, rather than just Regular Education.)

We’ve dealt a lot with special needs here in our home - Picasso has a long list of letters regarding his diagnosis: IEP, 2E, ASD, OT, SLP, etc. These don’t define him, these just tell us about a certain part of him. His “special needs” are that he needs more time to work, he needs quiet, he needs to be free to roam as he does his work. THOSE are his special needs as a result of his diagnosis.

In that line of thinking, I believe that all students have special needs - they all have conditions under which they work best. Some prefer music to study by, others prefer silence. Some work well in groups, others need to work individually. As I’ve been home with our kids, I’ve learned many of their special needs. Our daughter likes to be able to talk out loud while she does her work. This doesn’t bode well for the one who needs quiet! Our older son loves every opportunity to learn. His special need is for continued opportunities to learn.

For so long we’ve focused on our younger son’s therapy needs - helping to address his special needs. That’s just been the way it has had to be. Things have had to be centered around his needs because they have been necessary to his overall functionality and ability to navigate through life. He has gained so much and is learning and growing at a tremendous rate and we are grateful! We’ve been able to get him to a point where things are easier for him - life is easier for him!

And keeping in mind the special needs for all 3 of our kids, we’re looking at moving some of his therapies closer to home. In fact, we should hear on the transition of one therapy soon, hopefully. Having him closer to home will directly allow us to focus on our older son’s special needs - a love of learning.

Our older son has the opportunity to apply for a program that will allow him to skip 8th grade next year, and move right on to high school with a group of similarly-minded academically-strong students. The demands on his time, and ours to work with him, will be greater. Having Picasso’s therapy closer to home will allow us the time and flexibility needed to focus on our older son’s love of learning. The place we currently go for all our therapy is almost an hour away, one way. It has served us so well, and I’m sad to even start to consider moving on.
But I firmly believe we owe our older son all that we can possibly give to meet his needs as well. He carries 95% or better in all his classes, he’s been accepted to the National Junior Honor Society, he keeps up with his piano practice, he reads more than I’ve seen many kids read, he helps around the house, participates in youth group and church activities, all the while wanting more opportunities to learn or read.

And so, this weekend, we’ll sign all the forms, fill out all the information, and send in the application for him to join this program. It will be a good fit for him. We’re hopeful that he will be accepted - he meets all the criteria - and that this will give us a great opportunity to help meet some of his special needs. We love that he loves to learn, and we’re grateful that our younger son is at a stage where we can get his therapy closer to home, focus on the siblings’ educational needs a little more, and hopefully just have more time together!

Filed Under: autism spectrum diagnosis, homeschool family, Individualized Education, special needs family Tagged With: autism spectrum diagnosis, homeschool family, special needs family

The Circle of Special Needs Families

February 28, 2025 By Rebekah 0

So often this journey can feel incredibly lonely. Sometimes watching others move in their groups, talk with their friends, and get on with their lives can feel isolating because that’s not always the way it happens for us. But I’m grateful for the support that comes to us from so many different directions - the circle of special needs families.

Our guy just finished a 10-day intensive at therapy. It was, by far, the hardest one so far, but his progress overall has been great! When he is stressed from all of this, it affects us all, as we are his family and we deal with the moment-by-moment and it’s not always so pretty. I’ve been a little bit inside my own head as I think on his issues and family issues, and next steps, and so on.

Today I took him for his regular weekly therapy. As I walked in, another mom was looking at a bulletin board. As she saw us come in, she moved toward the main desk and picked up tissues. ’Tis the season for colds, but she wasn’t blowing her nose. She was wiping her face. Not her eyes, her face. She was in tears, and I was no longer focused on what was going on inside my own head, but on how I could help her. I was torn - I wanted to go over and sit with her and assure her that she would be okay, but I didn’t want to do that in front of my son. I didn’t want to draw his attention to her sadness. Another family came in and while my son went into his session, I still didn’t want to draw unnecessary attention to this mom’s sadness, so I waited.

Finally, the room emptied and we were the only ones around. I asked her if she was just starting at the center, which she was. She told me a little bit about her story. I listened as she talked about feeling uncertain, and scared. I listened as she said it was all taking a toll on her entire family. And she cried. And I cried. (I’ve come to realize that, on this journey, you don’t cry alone.) As we talked, she had questions and I was able to help with some of those. Peace seemed to come over her as we talked. It’s that moment of realizing you’re not alone - you’re not the only one walking the path on this journey. I trust that she felt more secure, and less alone, as her family starts this new journey.

Tonight I emailed a friend. I had some autism-related questions that I knew she would be able to help me with. It was my turn now - I was the mom on the edge of a new situation, full of questions, a little fearful, and reaching out for someone who might have answers. I was not disappointed - my friend knew just what to say to answer the questions I had. I knew she would!

Just like I knew I could talk to that mom in the waiting room this morning and help to answer her questions.

I’m learning that our life may not always look typical. We don’t move with as much ease as other families. But we move in a special circle where there is always someone we can help, and someone who can help us when we need it - the circle of special needs families.

Filed Under: anxiety and autism, autism spectrum diagnosis, special needs family Tagged With: anxiety and autism, daily blessings, dealing with feelings, special needs parents

The Little Things

July 30, 2024 By Rebekah 9

Last week, my son had 3 hours of back-to-back therapy. That’s not our usual schedule, and the day was stressful with an added, different therapist since one of his regulars was on vacation. By the end of the three hours, he was notably worn out - I mean, he’s 8 years old. 3 hours of therapy, no matter what kind, is stressful and tiring. He did a great job and kept himself together very well.On the way home, we pass a farm with many seasonal fruits and veggies. They also have a “cut your own zinnias” section. 20 flowers for $1.75. Couldn’t resist! Our weather has been hot, hot, hot, and that particular day was only about 87degrees (funny when that sounds cool) so we stopped to cut some flowers. It’s the little things…As we walked, we looked for good flowers. We talked about how to take care of the flowers. He picked different colored ones with different people in mind - sister, brother, Dad, Mom, himself. It was evident that his stress was minimizing as we walked up and down each row.The point? Sometimes, to get rid of stress and anxiety, all that you need to do is stop and smell the roses, or stop and cut some zinnias. It really is the little things that can help us to focus, de-stress and get back on track. Remember that as we start the week.

Filed Under: family focused, inspiration and motivation, special needs family

Life Changes

June 22, 2024 By Rebekah 3

The past few years in our lives have seen many changes - changes in plans we had, changes in things we were able to do, changes in goals and dreams. None have been bad, but all have required a major step back to re-evaluate our plans as a family.A few years ago, our younger son was diagnosed with Asperger Syndrome, among other things. What we had planned in terms of schooling and nearly every other aspect of his life, and ours, had to be let go of, so it could be replaced with something amazing that God had in store for us.

Tim has had the same job for the past seven years. At times, we’ve struggled over various aspects of the job, but we were grateful that he *had* a job, as we watched others around us lose their job. We held onto that job fiercely, as it enabled me to be home with our children, to homeschool them, to drive them to therapy and various activities. We were grateful that we had that opportunity.A few months ago, Tim began talking with someone who was starting a new company, or had just started a new company. It started more as a conversation of, “Well, how can we work together?” It ended up being, “Why don’t you come work for me?” We weighed the pros and cons, we discussed all the options, we prayed, and then we prayed some more.Because we homeschool, we have to have an adult in the house while the kids are doing their schoolwork. Because our children are young, of course this is a given. However, because we have to shuttle our guy back & forth to therapy several times a week - maybe more frequently in the fall - we were at a loss as to how to really make it all work for all of us. We don’t want to have to continue taking all 3 kids for one guy’s therapy, especially if it’s going to be for 10 days in a row, if therapy options fall into place as we’re hoping. The place where he receives his therapy is nearly an hour, one way. It’s tough on all the kids, but we’ve done it because it’s what we have to do.

Lunch with Daddy, at his office

Until now.

Tim took the new job opportunity that was offered to him. Starting Monday, he is officially employed by the new company, and will be working from home.

That’s right - Working From Home!

Music to my ears as I’ve prayed for a way to give the other two kids a break from having to juggle all the trips to and from therapy. Music to my ears as I worked and re-worked the schedule so many times last year because of all the trips to therapy. Music to my ears because Tim’s last job had him out of the house almost 12 hours a day, and when you’re raising kids, that’s tough! He left in the morning just after they got up, and he was home about 90 minutes before bedtime - and that’s if there were no meetings, or no one needing picked up from somewhere.

When he gave notice, one of the main reasons he gave for needing to move on was that he needed to spend time with his family - his wife, but also with his kids. They’re growing up and he wanted to be there more.

Today I am grateful. We dropped the kids off at a local VBS at 9am. *WE* dropped them off - Tim & I together. Unless I was awfully sick, or unless he took vacation time, he’s rarely been home at 9am that I can remember - not for the last 7 years anyway. Then we went to breakfast. Again, other than vacation or holidays, I’ve rarely eaten breakfast WITH my husband. Next week as I take our son to therapy, the other two will not have to tag along. They’ll be free to play and enjoy some time out of the car.

Gratitude. My cup runneth over

I’m linking up with Jenny today - stop by and read some gratitude posts and link your own!

Have a great weekend!

Filed Under: family focused, gratitude and appreciation, homeschool family, love, real life, special needs family

Our Journey

June 22, 2024 By Rebekah 2

This post took time. Time and energy. It would not let go of me until I had written it: a walk down memory lane, you might say. I hope it’s a blessing to you.

—————————————————————————

Our Journey

Twelve years ago, I became a mother. Just like for everything else in my life, I had a plan. A great plan! And my life as a mom was absolutely going to follow the plan I’d laid out, because that’s what I do - I plan.

I envisioned everything typical for my parenting journey - sending my children to preschool, then to school, being involved in my child’s/children’s school, cleaning the house during the day while my kids were at school, being involved in church activities, time at the playground with friends, weekend birthday parties, travel, adventures. Mostly, walking along the general path that most families seem to walk.

It’s a beautiful path, that one. And to be honest, we did walk that path. We still do some days. We enjoyed preschool, many church activities, time with friends, play dates with others. The world is full of adventure and activity on that path. It’s a blessing to walk with others, to share interests, to celebrate life at birthday parties, to be at church with family and friends.

There are a lot of well-worn areas on the path. Many have traveled it before us, many seem to come behind us. The path is not without bumps or hills, but with some work and cooperation, they are easily traversed. Those ahead of us lend a hand; those behind us push us on. At times it’s hard - life is hard, walking the path is difficult. But you’re not alone, and that makes a world of difference.

I enjoy that path. I feel utterly successful as a mom, a wife, a friend, when I travel that path. Things seem to come easier along that path. There is rain, and there are puddles, but even they seem fun to jump into and splash. Some are deep and sometimes you get a little more wet and dirty than you thought you might. But the clean up is not too bad. It’s still a challenge, but it’s manageable. It can seem hard, and at times it is, but the clean up always gets done.

If I never knew any differently, that path would be amazing. I relish in the warm sunshine on my face, the wind at my back, the rolling hills full of sunflowers and daisies and bright summer colors, glistening drops of rain across the lush green fields. Friends, that path is a gorgeous path to walk as a parent. It’s a beautiful walk as you hold your child’s hand. Many who take that path are not disappointed! They see the beauty, just as I do.

One day, while I thought I was walking on that path, I realized we’d stepped a little off the well-worn trail. We had slowed down. In fact, we seemed to be stuck in one of those puddles that I once thought was fun. I figured that a second child would enjoy splashing in the puddles, cleaning up, and moving on, same as the first child. Why not? It’s fun! We splashed, I cleaned up the first child, then myself.

I turned to clean up the second child, but I could not get him out of the puddle. A few extra minutes - I could indulge him that time. After all, he is a boy. They all said that sometimes boys need a little while longer. I was a successful mom, along the beautiful path - I could take time for my son.

And so we sat. He played. He splashed. He was having the time of his life. But it was time to move on. I pushed and pulled, but he did not want to leave. I needed to clean us up and get us back on the path - the path I was sure we were supposed to walk. He wanted no part of getting clean, though. He tried to run away from me - farther off the path, through the taller grass, away from all that I could see and all that I knew to be right and good and normal.

What could I do? My husband and my son were waiting for us - on the path we were walking together. The gorgeous path of beauty and life. I called to my wanderer, but he went farther into the darkness, alone, but not afraid. My family was being divided. I could not pull my husband and son from all that we know, from all that had worked for us. Yet with each passing moment, my little blond-headed toddler was intrigued with everything he saw, as each new step that took him farther off the path.

Source

I took a step - a step off the path. My eyes were on my husband and my son, and their steps, though slower, as they waited for us, were progressing nicely. Lovingly, they nodded approval as I inched closer to our wanderer. My heart ached for the path that I wanted so badly to travel - together. With my whole family. But no amount of “good mothering” could distract my son. Any attempts at physically removing him from the trail he was wandering were met with fierce screams and opposition.

A deep breath. I could see the path - the path I loved. My family. My friends. And I could see my wanderer. My happy wanderer. My plan - the plan that kept me on the beautiful, sunlit path - I opened my hands and let the plan, comprised of list after list, float into the breeze.

Fear. Frustration. Many tears. My husband and our son waited - sometimes along the path, sometimes near the path, sometimes nearer to us. All the while, still a family. We welcomed a daughter - gorgeous, happy, full of life. Sometimes her joy for life got our son’s attention. At times, she was able to draw him closer to the path. Our older son was kind and patient with his younger siblings. What love he displays.

But we were not to return to the path as we hoped. We inched farther away from it, all the while still able to see it and feel attached to others as they made their journey.

One day, I looked around. I realized something had happened. We were off the path. All of us. My husband and our son and daughter had joined the wanderer and me as we sat well off the path, inspecting the under side of a leaf. I sat on the ground, while the wanderer sat in a mud puddle. I had no clue how he could be happy. I found the mud pretty disgusting; I didn’t like the feel of it on my skin. But there he sat, looking at the leaf, and then playing in the mud.

I did not understand. I didn’t recall anything like this from the plan I’d just let fly away. I mean, sure, kids like puddles, but getting caked in mud, and never really minding? That was new to me.

Source

We stayed there, in that spot, for a long time. At night, we’d sleep, but good rest never came easily. Sometimes our wandering child would stay awake till very late hours; other times he’d wake us while it was still dark, ready to tackle the day. My husband and I would try to take turns with him, but he wanted me. Day and night, night and day. Exhaustion didn’t even begin to describe how I felt.

Some days I tried to move him along the path - I would pick him up, clean him off, determined to move forward. We could do this - I had a plan before, I could make one again. The minute I would set him down, he’d find a new interest to occupy his time. I braved a glance at the path. I had to squint - I realized I could hardly see the path we had once walked - skipped - along.

Our life was different. Alone. Not what I planned at all. Everything that had come so easily at one point was now so difficult. I questioned every parenting skill I thought I ever had. How could life be normal for our children who needed normal, but new and interesting for the wanderer who required time and so much attention?

Prayer. A lot of prayer. A lot of wondering if God was really sure that He had done the right thing. I’m a planner; it’s who I am. Sometimes I asked friends along the path for encouragement, for prayer. This sitting near the mud was overwhelming. I reached out to anyone who might know why we couldn’t get our son back to the path. That’s the path we were supposed to walk - I was sure of it. But I couldn’t get our little wanderer to join us. I couldn’t move him physically - and when I did, he’d run right back to where he wanted to be. Far, far from where we were supposed to be. Those who I thought might know how to get us back on the path, only offered only small amounts of help and hope. Try this, or don’t worry about that. Those things helped - for a short time. But really, I enjoyed that time.

On this mucky walk far off the path, we felt alone. We were surrounded by bugs, grass and leaves, mud, mud drawings. On rare occasion, we’d encounter someone else also sitting off the path with us. Sometimes their child would twirl, sometimes their child would bubble over with gorgeous laughter. Laughter - we were never without laughter. Somehow, no matter how mucky or muddy we seemed, our children were laughing. They would hug and kiss us, covered in mud, or with hands full of wildflowers. They weren’t the sunflowers or daisies that I loved along the path, but they were pretty. Sure, they were probably weeds. They did die quickly. But they were weeds picked for me.

A long time passed, many ups and downs. Often it seemed like more downs than ups. Seems like we’d sled down a long, icy hill, only to have to work so hard to climb up the other side. Work. Life seemed like so much work. The school plan changed, the church plan changed. When I let go of my plan and let it blow away, it really did change everything. As we sat far off the path, often in the chilly shade of large, over-hanging trees, we realized we were often alone. Very alone. Sometimes just as stuck in our alone-ness as our son seemed stuck in his mud puddle. His own little world - and we were not a part of it. We were his source of survival while he became more and more covered in mud.

On occasion, he’d share something with us. He’d let the mud dry and make a picture for us. Yes, it was a picture drawn by a toddler. To us, though, it was an insight into his world. He drew a picture of the family. All of us. He was in the middle, we were all in a circle around him. {Looking back, today, this picture makes perfect sense. As we sat, though, I was just grateful to know that he realized we were there.}

Time passed. We never seemed to move very far. Others on the path would wonder why we were so far away. We looked like every other traveler. Surely we just needed to parent better. It was easy to let those people keep walking. We probably parented more while they slept, than they parented in a normal day. Touchy subject. Moving on.

One day, the sun was shining. The thick, over-hanging branches let through some of the sun’s rays. I opened my eyes to the bright sunlight. People. A lot of people. Some were busy with their work, but waved hello to us. Others were just hanging around, they greeted us warmly and sat to talk. I looked for certain friends but did not see them; I missed them desperately. There were some I hardly knew, or hadn’t seen in so long. Smiles. Everywhere. Laughter of children. Weeds. Arranged beautifully. No longer weeds, but wildflowers. Appreciated by all who received them.

I saw the path. I no longer had to squint. Somehow, we’d moved back closer to it. I’m not sure when, but it had happened. And then I saw it. There was a smaller trail. It led from the path, to where we were, to where others were walking or playing. Not just one trail - many trails - smaller, and leading from the main path, to many different areas. Many journeys were taking place - not just on the path, but beside the path, across it, around it, near us, farther from us, each family on their own, unique journey.

I looked for those who were mine - my husband, my boys, my sweet girl. I found my girl first - she was making a crown out of the wildflowers. She and her friends were skipping and playing games. Off the path. Friends. Holding hands, playing together, off the path. My boys, my husband - where were they? When we first ventured off the path, my husband and older son stayed close to each other. I started walking around, trying to find them. All those trails to and from the main path were very useful as I searched.

I found my older son next. He was learning - reading, talking with friends, tossing a Frisbee. Shooting water guns. Laughing. My daughter and my oldest son were fine - they were happy. Content.

My husband, where was he? My wanderer was hanging out in the mud still, playing, making pictures in the dried mud. Where was … I could hardly believe my eyes. My husband had tried to play with him before, but my son was never interested. I found my husband. He was sitting at the edge of the mud puddle, driving a toy truck through the mud, much to the wanderer’s enjoyment. They were playing together. Together. Tears flowed easily - happy tears.

As I looked around I saw so many people - people happily on the path, but so many people far off the path. It seems that the dark shade of the over-hanging branches was not a bad place to be. It was different. Those wildflowers near the shade were gorgeous. Mixed into a bouquet with the sunflowers and daisies, they made a lovely arrangement. I thought that some people would be like me - a strong need to stay on the path, as it was “home”. And there were a few - I don’t blame them. I was a path person. I would still be a path person if I had my way. The path is amazing - the things you hope and plan for, and the walk along the path is wonderful!

However, it took a child who wanders to get me to see things that I would have never noticed otherwise. God gave us a son who seems to be meant for places other than the path. Maybe God knew we’d never veer off of it on our own. I had no plan to veer off, not until I let my plan blow away in the breeze. I had decided to stick with my son, and I stepped off the path. He’s my son, I couldn’t let him go. And when I stepped off, my eyes were opened to a whole new way to walk through life - extremely different, but no less beautiful.

Source

We follow a less-traveled path and with each step, we know we’re making it smoother for the next ones to come behind us. Or beside us.

Friends. Travelers. Blessings. All on our own journey, but never truly alone.

Filed Under: autism spectrum diagnosis, family focused, gratitude and appreciation, love, special needs family

You Are Not Alone / #YouMightBeAnAutismParentIf

November 22, 2024 By Rebekah 31

Yesterday, Sunday, was a particularly tough day for a lot of reasons, many of which revolved around Picasso, our son with special needs. Feeling rather bummed about the whole day, I plopped down on the couch and mindlessly checked email, Facebook, and Twitter, since I hadn’t done that for awhile.

When I opened Twitter, I saw that Jenny had used the hashtag #youmightbeanautismparentif and I started to read tweets in that thread. First it seemed to be starting as sort of a joke - funny, quirky things we have to deal with as parents of kids on the autism spectrum.

But then it started: the realization, for me, that these people understood what we are dealing with, in our son’s life. The same things that are really hard for us, are really hard for them. And the things that make us laugh, make others laugh. And the things that hurt, affect others in the same way. What I found was a larger community. People had thoughts and feelings very similar to mine. There’s something cathartic about laughing and even crying with people who understand your emotions.

Some of my favorites from the #youmightbeanautismparentif thread include:

*your first instinct in a new environment is to locate all of the breakables and exits (@BobbiSheahan)

*you are happy when your child gets in age appropriate trouble (@RaisingASDKids)

*You still bear scars from your child’s last 3 meltdowns. (@thepyxie)

*you know what day of the week it is by the professional you have an appointment with (@MurasakiMoon)

*You go toe-to-toe with ANYONE over your kid’s Education, Therapy & Medical Needs. We’re not here to make friends (@theblondeview)

*the therapy office is like your second home (@sugrNspiceLife)

*your child quotes movies in the same accent/pitch as the movie (@manyhatsmommyMI)

*you trip over a toy at night and pause to “fix” the now-out-of-place toy so it’s back in line. (me)

As I read through these tweets, it was a great assurance to me that we’re not in this alone. Not a one of us. There was an expressed gratitude over the fact that, “Oh, I’m not the only one!” We are each other’s cheering section. When one is down, the masses rally. When one hurts over a situation at school, the others are there to support and empathize. When one hears “I love you” from their child for the first time, there’s not a dry eye in the house and the congratulations flow freely!

You (or I!) may be the only special needs family in a particular neighborhood or town, but you don’t have to go any farther than your computer to find that you are not alone!

After all,

#youmightbeanautismparentif you stayed up a little too late to follow this thread and could now use more coffee!

Filed Under: autism spectrum diagnosis, parenting, special needs family

The Weeks Ahead

July 9, 2024 By Rebekah 0

It’s that time again…time for the second occupational therapy intensive for Picasso. 14 days of therapy (therapies, including all of them) in the next 17 days. The only days between now and July 26th, with no therapy, will be Sundays.

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I’ve been preparing Picasso, as best as I can without going overboard, and it’s not gone so well. I’m sure he’ll do fine, but the anxiety is right there at the surface. Thankfully we’ve gone through one of these before and now know just what to expect. Hopefully this round will be better in terms of our guy’s ability to cope, but we KNOW that the ups & downs in emotions that we’ll most likely experience from him, are completely normal.

Picasso & I were discussing this today and I told him that these will again require a lot of time and effort on his part, but that he’ll probably sleep well each night after all the strenuous workouts his body and mind will be getting. He asked, “What if we had to leave early in the morning and didn’t get home till midnight for all these days?” Reality check. Gut check. I replied that if that was what we had to do to provide what was absolutely the best for him, we would do it. He said, “I guess I could sleep in the van.” I responded that it’s a good thing we don’t even have to worry about that because we will only be gone a few hours each time.

With the schedule as it is for the therapies this round, lunch will be on the go, and the dinner plans will be crazy. I hate almost all fast food, so it’s not even appealing to me to think about happy meals or such things, from fast food places. Seems that loading them with all that junk is counter-productive to all the GOOD that we’re trying to do for his body. So I’m working hard today to make sure I have a good plan for healthy eating for these weeks.

During the first week of his therapy intensive we also have VBS at our church. In an effort to keep life “normal”, we’ll be trying to get to that all 5 nights. Obviously, Picasso’s attendance will be based on how well he’s doing. But our other 2 kids deserve some normalcy through this as well, because driving an hour each way, for a sibling’s therapy, is a tough thing for them as well. They’re troopers, though, and working through this together, with them, is instilling a sense of family in their lives. They have full knowledge (well, as much as an 11- and 4-year old can understand) of why we go to all these therapies, the benefit it provides, and the importance. They also know that if the situation was different, and they were the one needing all the extra help, we would absolutely do this for them as well!

Most of the therapies are in the afternoons, with the exception of Mondays. That’s not a problem, but it does mean that by the time we get home from them in the mid- to late-afternoon, Picasso will be pretty much done for the day - especially in the second week. It’s emotionally exhausting for him - not to mention physically tiring as well.

Our anniversary falls in the middle of these two weeks of therapy - on Sunday, the 17th. Tim & I took one look at the schedule and decided that there’s no way we’ll even attempt to celebrate on our anniversary, so we’re making plans for sometime in August when the craziness has died down some.

Please don’t get me wrong - I’m not complaining at all. This is absolutely the best for him, and we are beyond grateful for the way it’s all working out! We got so many great reports from the therapists during the last intensive: his body is getting stronger, his mind is organizing and processing a good bit better, he’s less anxious. There’s still a long way to go, though.

There will be at least one more therapy intensive this year, possibly two, but that’s doubtful. We’re allotted one per school quarter, and I’m not sure we’d be able to fit two in between the end of August and Christmas, based on holidays, the end of the school quarters, etc. Thankfully, the scheduling craziness is not my issue - I just have to show up for when we are scheduled.

So in case you don’t hear much from me for a couple of weeks, this is why. I’m hoping for more good updates on his progress. I’m also hopeful to maintain some sense of normalcy around here. Our favorite pediatrician writes prescriptions like this for when a child isn’t feeling well. And while our children are physically healthy, we definitely need this reminder:

Lots of love and snuggles. Extra rest. Best seat in the house for some extra TV and movies. Popsicles for sore throats. So much humidity that the wallpaper peels. And LOTS of hugs and kisses!

Maybe we don’t need the humidity for these 2 weeks, but I definitely plan to take her prescription to heart and provide all the rest of the things on the list. Popsicles - not for sore throats, but because we definitely need some special rewards at the end of tough days!

Filed Under: favorite pediatrician, special needs family, special needs therapy