Our Journey with SPD and ADHD
From the time I was a little girl, I played baby dolls like a champ. I mothered them with the greatest of ease and never tired of burping, changing, rocking, dressing, feeding, and talking to my sweet babies. With great happiness, I was a mother to many. I knew exactly what they needed, and I eagerly anticipated my future days of mothering ahead. Some may be embarrassed to admit this, but I remember getting a baby doll for my 12th birthday. I was so thrilled! The only thing that made me a little sad was that I was afraid my mom wouldn’t buy me more. Call me crazy, but maybe I went into this mothering gig with a false sense of confidence or capability. I can tell you this, in all honesty. There are parts of this mothering journey I don’t think one could ever prepare for. The journey of parenting a child with special needs is tough, one probably none of us prepares for. For some, the needs are physically obvious, and for others, those needs may be more hidden but just as impacting.
When I imagined mothering, it was not much like the reality of today. This thought might make you laugh as it has me many times over the past few years. In all those preparatory years of mothering, I can tell you not one of my babies was ever a boy. How was it that I had missed that one? Did God have a sense of humor when we sent me six boys? I can also tell you not one ever had anything wrong with it, ok, well one did. The one that I totally wore her legs and arms off, but when my mom duct taped them all back on, it was as good as new to me. Now others might have called her “ugly,” but in my eyes, that top knot on her head from carrying her around by her hair and the scuffs on her face were not even noticeable. She was beautiful in my eyes. How I wish I had a picture of her to share. I am certain you’d look upon her with delight, as I did. Ok, maybe not quite the same.
As you may have discovered in your own life, mothering does not always turn out exactly as we imagined. And in so many ways, it is even better. I mean I must admit that the journey has been more exciting! And I never dreamed that I could or would love a child near as much as I have discovered loving each and every one of mine. I never imagined having seven children. (Though it is an incredible blessing!) I never imagined having six boys and one girl. (And that has been a wonderful adventure!) I never imagined having kids that talked back. (Could do without that!) I never imagined having kids that didn’t delight in me as I did them. (That’s a surprise, huh?!) I never imagined kids with glasses. (Simple but true!) I never imagined kids throwing fits. (I wish those didn’t exist…ever!) And I never imagined kids with special needs or who would be high-need.
And that last one is where I’m going this week. You see, each week as I debate what topic to cover in the blog, I am usually flooded with ideas, and weeding out all the choices is the work! This week, however, I kept drawing a blank. That is, except for my current struggle of mothering. Now I don’t know about you, but I much prefer to share my journeys when I feel like I am through them, not as I am stumbling and bumping around. I mean I can talk with great ease about domestic violence, depression, and even our youngest’s journey with a birth defect. But this struggle? I kept getting the sense that this was the topic. And I fought it a bit.
Maybe it is a bit of pride in the way. It might be because it touches on my feeling less than equipped in mothering a child with these needs. It could possibly be because I don’t feel I have mastered a plan or approach that is foolproof, and I struggle with the idea that we may not get one. Perhaps it is simply that sometimes even those things staring through our windshields are things we’d rather have in our rearview mirror, where they are not front and center in our world.
But friends, I write from the raw today. I write from the trenches of mothering, where I have a feeling some of you may be as well. I write today about our journey with one of our little ones as he was diagnosed this summer with Sensory Processing Disorder, ADHD, Depression, and Executive Functioning Disorder. This post is dealing primarily with the first part of that, as it came in two pieces and with a couple of different days of testing/assessments and professional’s input. And it seems to me that this sensory processing challenge is one that many moms are experiencing. It has been something I’ve shared with a few other moms who were struggling for answers within this last year. So, I know there are others who are sharing this journey and impacted as well.
It’s been a slow turn of events, as I started reading books on all these things over the past few summers. As a counselor, I had a pretty good idea of what we were dealing with. But nothing quite prepares you for experiencing this within your own family. My own fears grew, and I think I found it easier just to attempt to mother harder, mother better, or do it right. But of course, those things don’t work. I knew that too.
My husband, on the flip side, didn’t want to entertain even the thought that there might be some issues going on. In fact, each time I brought it up, it was quickly set aside. My attempt to modify his diet was usually met with some resistance and my husband’s desire (as with many strong ranch men) was just to let him eat what everyone eats and what people have always eaten!
Now let me tell you a little bit about our little guy. (I am not going to use his full name, as it would then appear in searches in later years that he may not want.) So, we will just use his first initial. J is eight years old, and the fifth in a line of seven kids. He was born after a difficult pregnancy scare with a blood clot that was bigger than the embryo when we first discovered it.
I was driving my mom home from the hospital after two weeks in ICU and 2 additional weeks in a rehab hospital following a near-fatal car accident. While driving her home, I started bleeding. Until I could see the doctor the following day, I fully feared I was losing my baby to a miscarriage. Thankfully they were able to see the heart beating when I got into the doctor, but because of the size of the clot, there were no guarantees on what would happen. We prayed desperately for our little baby. Which is why we chose a name meaning, “God has heard us!”
He was safely delivered and developed as usual. In fact, he grew to be a toddler who was very bright and talkative. He kept us hopping. He was very precocious and curious. He was quite brave and moved faster than any of our other four children. And it was obvious even early on that he had a strong personality. He tested his boundaries. He wanted control. He had spunk and charisma. He kept us laughing with his crazy adventures and funny responses.
My understanding of personalities has been a great tool in working with J over the years, in fact, I don’t know what I would do without that information in our corner of parenting. But I knew that I needed additional tools in conjunction with the knowledge of personalities. Yes, I read. I researched. I asked questions. I thought. I prayed. I cried. He seemed extra sensitive, extra active, extra emotional, extra needy, extra picky, and extra challenging! And even in my best mothering, I was having to work hard to find extra care, extra energy, extra patience, extra understanding, extra time, extra kindness, extra gentleness, extra self-control, and extra encouragement!
We discovered some little things that would make things easier as we parented him and tried to meet his individual needs.
- We kept his diet free of Red 40. This is a food dye that within even just 15 minutes tended to get him all excited and the roller coaster of emotions would start up. It was a surprise to see how many snacks and foods had this added. (A lot of chocolate, things that are colored red, pink, orange, purple, and sometimes blue and brown.)
- We utilized the use of high-quality pharmaceutical grade essential oils in his daily routine. These helped him experience more calm, support for emotions and improved sleep.
- We worked hard to keep a schedule and routine, even in the summer.
- We used consistent and predictable discipline and rewards.
Despite our best efforts, the struggle was still great. J felt it. I felt it. And the whole family felt it. We would feel it from the start of the day and even in the night (as he was often up and out of his room at night). I think I vacillated between horribly aware of the impact, to wishing it all away and putting my head in the sand.
Obviously, I didn’t want anything to be wrong. I mean, I’m the mom that cried when my second oldest had to get glasses, not because I didn’t like them or the idea. Maybe in some way I hoped that nothing would be a challenge, something different, or anything he might feel badly about. Boy, was God preparing me for the years ahead! (Glasses are the least of our concerns with J…though he has those too!)
I think for a while, we could chalk things up to immaturity and that worked. I mean, how much can you expect from a kindergartener. In fact, we went into the kindergarten year fully prepared to repeat, as we wanted to allow him some extra time for social maturity. (Instead, we repeated the first-grade year, which we have decided many times over was the best thing we could have done!) But as he started into the first grade and then repeated his first-grade year, it was becoming more apparent that his emotions were getting more intense. He struggled with many things, but a few included:
- Emotional regulation
- Texture and clothing sensitivities
- Over and under reactive to stimulus (smells, movement, sounds, temperatures, etc)
- Food sensitivities
- Body control
- Processing directions
- Follow through
- Anger control
- Staying on task or following directions
- Being extra active or under active
- Horrible sleep patterns
- Seemingly depressed
- And more…
I felt like I was working overtime trying to figure out the issues, run far enough ahead I could outrun the issues, and stick around cleaning up the after-effects of issues. It was exhausting. And I truly feel it was a big part of what contributed to my burn out and deep depression a couple years ago. No amount of trying, planning, or figuring things out was bringing us to a consistent and predictable point with him.
What was our turning point?
We went on a family vacation. These are historically very challenging for J. The travel, the lack of routine, the changes in location and beds, the food, the schedule changes, the mere fact that we were all together in small spaces…all of these things contributed to a tough vacation. But on one particular night, J had a melt-down of epic proportions. We averaged at least one if not three or more a day, but this one shocked us all. He laid in bed and sobbed, “It would be better if I was dead.”
Our family (mom, dad, and four older siblings) stood around the bed and comforted him, offering him our assuring words of what we loved about him. But on the inside, it shook us all to the core. I think it is a night his four older siblings will never forget. And I know Jeff and I won’t either. It broke our hearts. No seven-year-old should feel that it would be easier if he was dead.
Now I don’t think he truly understood the whole finality of what death entailed. But with impulsivity aboard, I didn’t want to take any chances. I wanted to make sure our responses offered both truth and assurance and also wouldn’t encourage this as a way to get our attention. (And don’t be fooled. Ages of suicide or suicide attempts are getting younger and younger all the time. It is scary.) These messages need to always be heard and helped.
In those moments, I held him and listened. I tried to offer calm and assurance on the outside, yet my heart was sobbing on the inside. It was apparent to me that his world needed to be understood. I had to be willing to seek more answers. And thankfully at this point, my husband agreed.
Fast forward to this recent summer, and we were finally able to see an Occupational Therapist who offered great insight into what J’s world is like. With significant sensory processing issues, he does not take information in as we would, nor is he utilizing the same skills we are to accomplish a task. As the OT put it, “He has to work 10 times as hard as the other kids and still doesn’t see the same end result.”
One such example is with J’s writing. He struggles and it becomes more and more apparent the older he gets. His writing is very messy and lacks the structure of letters, sentences, and punctuation. The OT helped explain some of his writing deficits by telling us that he doesn’t even feel the pencil in his fingers the same as us. It would be equivalent to us “trying to write with our pencil greased up with Vaseline.” He has no sense of how firm he is holding it, how hard he should push to write, or even the steady and consistent work between parts of his brain (right hemisphere, left hemisphere, and frontal cortex) that help with the word and sentence structure.
Through assessment, we learned many things. These are just a few. J does not perceive that one side of his body can do the same thing as the other side of his body. He is unable to stop and start motor function on command accurately. We found that he is unable to keep his balance if not using his eyesight. He struggles to process things. We discovered he has great difficulty keeping his body from shutting down when trying to focus (yawned over 25 times). He has a hard time translating what he sees and then duplicating it. His struggles to remember detail for verbal processing is noticeable as well.
The OT gave us some helpful drawings that helped describe the sensory input and the foundations of each system that help us see the emerging task at the top of the pyramid. Of course, the skills at the top or even the middle will be difficult or impossible without the structure of the sensory input foundation being solid. This figure is below, with credit to Williams and Shellenberger, as identified on photo.
It was helpful and validating to hear a professional say that the struggles we were experiencing were real and made sense. It was also helpful to hear that these sensory processing issues could indeed impact behavioral challenges, daily functioning, interaction with others, family relationships, regulating emotions, self-esteem, and learning. I guess in some way, it helped me understand why life felt hard, no matter what we tried! I kind of felt like crying and hugging that OT all at the same time. Maybe that’s what it is like to have your world understood.
I mentioned that there were other diagnoses made as well (the ADHD, depression and executive functioning disorder), but I think the sensory processing has taken the most time to truly understand and digest. And maybe I am just slowly working through each one and that was just the first! LOL! I know I am not alone in this journey and that many other moms are facing these challenges as well. I hope to be able to post some random updates of our journey and what is working well. For now, we are utilizing the following things:
- A diet free of gluten and red 40
- Essential oils for sleep support and emotional regulation
- Vitamins, supplements, and melatonin for sleep
- Evaluating medication options
- OT and music therapy
- Considering counseling/play therapy
And may I encourage just a few things that we have learned really help J. You might even want to give these a try!
- Jumping on a trampoline (both outdoor and indoor tramps for us!) helps a lot
- Chewing gum is helpful
- Essential oils for calming and sleep support
- Playing with sensory bin items (sand, water beads, water, popcorn, etc.)
- Following a routine and structure
- Lying on the couch with head hanging down (like upside down) helps regulate emotions
- Playing outside (barefoot is the best!)
- Choices for things (give two acceptable choices and let him pick)
- Grace for the race!
I found my water beads on Amazon (affiliate link) I added the link so if you want to purchase or see more details, you can click the link to go directly there, I do earn fees if you purchase through this link.
These ideas could lead to a whole new blog article!! LOL!! But we will keep you posted!
Mainly, I just wanted to open the door to say, “Hey, I understand your world! I am here for you, and I care.” Sometimes those words feel like gold, especially when you are worn thin. It is tough being someone’s safe person. As a parent, we are often that closest support person who also gets our child’s emotional melt downs or anger when things fall apart or feel overwhelming. Keep your chin up! I wanted to share some of the helpful mantras, or should I say “Momtras” that are helping me navigate these challenging courses.
I CAN do this.
One step at a time.
I am just the Mom J (or your child’s name) needed.
We will find a new normal.
I was hand-picked to be his mom!
There is NO perfect way. I don’t have to try for that.
It doesn’t have to make sense.
I may not totally understand, but that’s ok.
This is our new normal.
God’s got this!
I a doing my best.
Help me God!
I’m going to love you the best I am able!
So maybe J has some challenges I hadn’t imagined for his life. Maybe I hadn’t imagined having such constraints on parenting and connecting. And even though I never imagined it, I think God’s helping put some good ‘ole duct tape on the limbs of this situation. I know he will give me what I need for this journey (just maybe not in surplus or advance as I might wish!). And while it may not be exactly as I imagined, my love for J will grow deeper and stronger. And just like the well-loved doll of mine, I will see in him things that are cherished and golden. Maybe you have felt some of these same feelings of parenting not being exactly as you imagined. Perhaps your child’s special need is more obvious or maybe it is more silent. Take heart. You can do this. I’m here for you.
This article has already gotten longer than I intended. But perhaps you have read something in this blog article that has you thinking you might be dealing with something similar in your child. Here is a free resource I am including for you to look through: the checklist of SPD symptoms. As always follow the link to get access to this free resource as well as the library of resources from past articles.
Stay tuned for future blog articles that highlight more ideas, as they relate to our journey with the Sensory Processing Disorder, ADHD, and Executive Functioning issues we face. In fact, I plan to do a simple post dealing with “What is sensory processing disorder?” Many parents are new to the issue and may have questions. I am also thinking about planning a FB Live with a sensory processing blogger who has been helpful as I’ve looked for resources. So keep checking back.
You might find it helpful to connect on Pinterest where you will find my Parenting With Personality boards, one devoted to Sensory Processing and the other to Executive Functioning and ADHD. I try to post lots of infographics, tips, and articles that I think others may find helpful as well.
Let’s Do This!
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