SPD

Bittersweet October

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October has always been my favorite month of the year.  I love the cooler weather (or the chance for cooler weather anyway, *sigh* Texas…).  Fall activities, pumpkins, earth tones, smells of spice, football games and festivals, my birthday, Halloween magic, what’s not to like?

Memories.

A year ago this week my son got kicked out of preschool.

So last year, in an instant, my cherished October was tarnished.  My birthday and Halloween were ruined.  (In fact I don’t even remember my birthday from last year but I remember Halloween day was a well played disaster.)

A year  ago my heart was broken into a million pieces and I cried so many tears I might have filled a bath tub.  I hid in the bathroom shedding those tears so my son, who now felt even more fragile to me, wouldn’t see me upset and think it was his fault.  My stress level wasn’t even registering, I had at that time, broken the meter.  I had no idea what to do.  I mean how even does a child get kicked out of PRESCHOOL?

I can still feel the panic in my chest from when I got the phone call and heard the words “You need to find somewhere else for your son”.  I can still feel the raw agonizing pain of sitting in the office of the director and having the Mama Bear surge of wanting to fight to keep him in the only school he had known for the past three years and at the same time yearning to hate them and wanting to never bring him back to a place who didn’t want him.

I can still see in the distance the grey clouds that made up those days last year.  I can still feel the buzz of the uncertainty that filled those days, the vibration of tumultuousness that wrapped itself around me like poison smog and clung on for so long seeming to break up for periods of time only to gather strength and gather me full force back into the gale force winds of a cyclone.

I have had a fear of impending doom for pretty much this whole month.  I think residuals of haunted memories began to invade, (especially when I had multiple baby-sitter catastrophe’s this month) and my freshly healed wounds still aching from the process of healing were broken open again.  So I did the only reasonable thing to make my October better and I attended a workshop at my favorite yoga studio to channel my inner Goddess and try to squash any and all residual feelings and I found a most awesome babysitter with tons of experience with children of different abilities, whom my child already adores after just a short time.

I have been trying my hardest to remain positive and have been filling my soul by listening to inspirational podcasts. In one such podcast (I’ll be damned I can’t remember which because I binge listen)  Jen Hatmaker‘s guest talks about how “life doesn’t look pretty for people who are doing it right.”  Oh good.  That must mean I’m doing it right.  “First we have pain then rising.”  How true that is.  Without experiencing the devastation we would have never began down the road to learning about Sensory Processing Disorder and start adjusting our lives accordingly and I would never have met or reconnected with some of the amazing people I have. 

So this year I’m going to remember my birthday and I already set up a fun evening for Halloween.  This year the sweet will over run the bitter and October will remain my most treasured month of the year.

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The difference between me and you

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As an SPD parent there are a lot of differences between what goes on in my world and what goes on in your world. For starters I have a swing a trampoline and a hopscotch rug in my living room and not because I’m the “cool mom” or because I feel the need to buy my child crazy things. I have this equipment because it helps fulfill some of my childs sensory needs and helps me keep my sanity.

When I plan for my week I don’t just plan for meals and appointments. I plan a sensory diet of things like making slime, throwing water balloons, trips to the park and bouncy place, again not because I’m the “cool mom” or because I want to make slime every other week but because if I don’t plan out sensory activities for my child his behavior gets a bit on the wild side.

I’m the mom who knows it’s going to take 1 or 2 hours to put my child to bed because he has an extremely difficult time unwinding. We own blackout curtains, a weighted blanket and a sound machine not because I wanted these things but because I needed help to help my child get to sleep easier. I’m the mom who still lays with her child every night to put him to bed not because I want to but because I can’t just put my child in bed and expect him to sleep. My child knows and tries every trick in the book to keep himself from falling to sleep and won’t stay in the bed to go to sleep unless you are there to keep him in the bed.

I’m the mom who has to make sure I plan for every outing and trip that we go on and I’m the mom who misses out on fun “normal” activities because my child gets sensory overload by those activities. I made the mistake of taking him bowling for the first time and forgetting to bring his ear muffs. We were in the alley for about 2 minutes when I thought we’d have to turn around and leave. We endured but had to cut our fun short because when he says he wants to go it’s not always because he wants to go but because he needs to go. I learned the hard way that if I don’t listen to his cues and leave

I’m the mom whose child doesn’t go to preschool, not because I don’t want him to but because we tried that and he ended up getting kicked out because he was sensory overloaded by things like playing in a loud and noisy gym and getting bumped into by other rambunctious preschoolers.

I’m the Mom who a year later knows what Sensory Processing Disorder is when a year ago I didn’t even know it existed. I’m the mom who reads and researches and tries to educate herself on a disorder so I can do everything in my power to make my child successful. I’m the Mom who hopes that YOU now know that this disorder exists and hope that you might share some information when you see someone you think who might be struggling with this.

Building a Sensory Diet

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While most women are planning what’s for dinner for the week I’m constantly trying to plan a sensory diet for my little one.  I’ve learned the hard way that if I don’t plan about three sensory activities for him per day that the day is harder on all of us.

While sometimes trying to come up with activities can be a daunting task some days it’s much simpler and they just naturally fall into place which makes life a little easier and smoother on all of us.  When planning a sensory diet for your kids don’t forget some every day things that you can incorporate.

Gardening or working outside is great for kids.  My son loves to help with gardening activities.  He loves to help me dig in the dirt and repot plants, he likes to water the roses, and he loves to plant seeds to see if we can make something grow.  He also loves sprinkling Epsom salt at the base of the plants to help feed them.  Yesterday I was sprinkling some diatomaceous earth around to see if it could help cut down on the ants.  He became obsessed with helping so we put some safety goggles on him and gave him an old parmasean cheese can filled with it and let him sprinkle away.  We used it all up and this morning first thing he was ready to go to the store to “get some more of that white stuff.” We also rake cut grass and put it in the wheel barrow and push it to the burn pile.  All of these activities help fulfill his sensory needs.

Sometimes a bath in the middle of the day works perfectly into a sensory diet routine. Water, toys, maybe some bathtub paint or chalk.  Occasionally the boy will request a bath and I feel overwhelmed with luck when it happens as I can usually get a chore or two completed while he plays away.

A bin of toys can be a great sensory activity.  My husband had a huge plastic bin filled with Stars are toys, GI Joes, and a handful of spaceships and or he miscellaneous toys.  We pulled it down and dusted it off and it has provided hours of entertainment with the boy.  He pulls out every single toy and plays with them all.  

Cooking or Baking can be a great addition to a sensory diet especially if it involves a lot of stirring or cutting.  I enlist help from the boy whenever I have a lot if veggies to cut up.  While he might not eat them after they are cooked he loves to help cut so I give him a small knife and supervise his cutting.  And baking… We recently made rice crispy treats which is a lot of stirring while melting butter and marshmellows.  The boy loved it although he wasnt thrilled about waiting for them to cool. 

Chores can also be helpful to fulfilling sensory needs.  Mopping, vacuuming, scrubbing toilets.  Amazingly my son loves to use the hose attachment for the vacuum so we take turns.  I vaccine the carpet in the kitchen and he takes the hose around the baseboards.  He likes to push the steam mop so we take turns with that too.  He also for some reason actually likes to scrub the toilet so while I scoop the cat box I sprinkle baking soda in the toilet and let him scrub away.

I hope these activities are helpful for you.  I know they’ve been helpful for me and they are all no cost activities you can add to your list of sensory activities if they aren’t there already.

You Know You’re an SPD Parent When

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People like to give you parenting advice about how you aren’t strict enough with your child and need to try spanking, timeouts, charts and numerous other things to get your kid back in line while you think to yourself, “Yea buddy, I wish those things worked with my child.”

When all your friends ask you where that “cool park” is you posted on facebook because knowing where every park is within a 10-mile radius of your home is mandatory knowledge.

You own at least one pair of noise canceling ear muffs and not because you go to the gun range, but because you never know what noise you will need to cancel out to avoid a meltdown.

You keep buying socks because there never seem to be any in the sock drawer and when you look for the three dozen pairs you know you own you can only find one sock at a time, you know in places like the kitchen, the car, outside, in the dogs bed, under the couch. . . everywhere, except, on the little feet they were bought for.

You know where all the indoor kid’s gyms, playgrounds, and bouncy places are and what the best times to go to avoid the crowds.

Other parents think you forgot your child’s jacket when in reality you have in the car: a long sleeve flannel shirt, a sweatshirt and two types of jackets because you were hoping your child might cooperate and put one on at some point.

You own at least two trampolines and/or swings (because you need at least one inside and one outside), three types of bikes, the spinny rocky thing you saw another SPD parent post on your FB group and you made your husband make a mini ninja warrior obstacle training course in the back yard because you are trying to retain a little bit of sanity.

You are never on time, not because you don’t try but because you child takes their shoes and socks off five times before you make it out the door and you have to chase them around the house 8 times to catch them to put on the shoes and socks, again.

You talk about something your child does to another parent and they say “oh that’s normal, my kid does that” and you scream in your head,”You don’t even know, YOU DONT EVEN KNOW!” while you grimace a smile and nod.

You have a reserve of patience larger than Mother Theresa’s.

*Sensory Processing Disorder is when the body does not correctly take in and process sensory information from our seven senses. People with this disorder are often overwhelmed or underwhelmed by stimuli from their environment and have trouble reacting as our society would deem “in an appropriate manner.” Sensory Processing Disorder is not well known to teachers and pediatricians, and that needs to change so the children with this disorder can get the help need. Read more about my SPD story here:SPD.

 

What Now?

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Ok, so now I understand why my child has been having so much trouble in school. Sensory Processing Disorder. So what now?

In my case, I lucked out. After asking literally everyone I came in contact with about in home daycare I found a woman, who is turning out to be a Godsend. She only cares for 5 kids at the most and she has previous teaching experience and has worked with autistic children. While my son isn’t autistic, most autistic children suffer from some types of Sensory Processing Problems so she’s dealt with some of the behaviors my son exhibits. After the first week, I was so thankful to have found her. She reports my son is mostly well behaved, “a good boy”. Music to my ears considering all his previous caretakers would just report the “crazy” behaviors he exhibited that I wasn’t sure what I could do about and that he didn’t exhibit at home because there aren’t massive amounts of children running around our house.

I’m looking into Early Childhood Intervention programs through my school district, but honestly, the thought of having to send him back to school after the experiences I’ve had is absolutely terrifying. I don’t want to even think about it right now, I just want to revel in the fact that he is currently happy in the place that he is at and I can put the thought of school on the back burner for a little while.

We go to Occupational Therapy. In Occupational Therapy we can work on both my son’s sensory seeking and sensory avoidant behaviors. We can also work together to build a sensory diet for my son to help fulfill his sensory seeking and avoidant behaviors at home and hopefully improve his behavior, emotions, and social interactions.

Knowing that my son’s behavior is not defiant and is mostly linked to a Sensory Processing Disorder has helped me tremendously. I am able to be more patient. I am able to better identify triggers to avoid meltdowns, to stop meltdowns before they start or to talk him through a meltdown better than I previously could. This is not the end of the road for us, it will be a long and perilous journey moving forward, but I am armed with knowledge and I will continue to build my armory with useful tools to help us navigate through our Sensory Processing Disorder adventure.

Let me share some of my Sensory Processing Disorder Toolbox with you.

Books:
Raising a Sensory Smart Child

The Out of Sync Child

The Explosive Child

The Highly Sensitive Child

Websites:

Leading Edge Parenting

Child Mind Institute

The Inspired Treehouse

Growing Hands-On Kids

Sensory Smart Parent

Sensory Processing Disorder Parent Support

Other SPD Parents- I cannot thank the other parents and mothers I have talked to enough for calming me down, encouraging me and opening my eyes to the beauty of having a Sensory Processing Disorder Child.

Online Groups- Because when you’re about to lose your mind at 2 am, there is always someone else up to chat.

This is Part Five in the SPD Series
Read Post One Here: The Day My World Came Crashing Down
Post Two Here: Trying to Move Forward and Getting No Traction
Post Three Here: A Spark of Hope
Post Four Here: Okay, So What is Sensory Processing Disorder

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Okay, So What is Sensory Processing Disorder?

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I was born on the Day of Research so as soon as I heard the words Sensory Processing Disorder I hit the ground running. I read and I read. My eyes turned to saucers as I read an article that literally described a little boy who could have been my son. I got on Amazon and ordered the two most suggested books about Sensory Processing Disorder. The Out of Sync Child by Carol Kranowitz and Raising A Sensory Smart Child by Lindsey Biel, and Nancy Peske

Sensory processing disorder (SPD) is a condition in which the brain has trouble receiving and responding to information that comes in through the senses. (Smitha Bhandari, MD “Sensory Processing Disorder” WebMD 31 May 2024). So what exactly does that mean? When someone has SPD information coming in through the senses isn’t processed properly and this misinterpretation of input can lead to issues with mood and/or behavior. Sensory input can be anything from sights, sound, lights, touch, smells and tastes and movement input (where your body is in relation to space). Any information we receive through our senses. A person with SPD will often overreact or under react to what others consider “normal” amounts of sensory input.

Sensory Processing Disorder is a spectrum disorder which means there is a wide range of symptoms. Most people are affected by one or more types of sensory processing symptoms, but they are not usually enough to affect everyday functioning. For example, some people do not like seams on their socks or tags in their clothes, so they buy seamless socks and tagless clothes or they cut off tags from their clothes. Other people do not like the way lotions, oils, bug sprays or sunblock feels on their skin so they will avoid using these products. Some people love the way textures and fabrics feel so they are constantly touching everything. These examples by themselves are often manageable but people with true Sensory Processing Disorder often have multiple sensory seeking or sensory avoidant behaviors that disrupt everyday life and functioning.

I found this to be a great article about sensory avoiding and sensory seeking behaviors. Some SPD people are seekers, some are avoiders and some have a combination of both.

SPD can also affect your proprioceptive system and your vestibular system. The proprioceptive system tells the brain where the body is in relation to other objects and how to move. (Arky, Beth “Sensory Processing Issues Explained” Child Mind Institute). The Vestibular System, which is a contributor to our balance system and our sense of spatial orientation, is the sensory system that provides the dominant input about movement and equilibrioception. (“The Vestibular System“, SPD Australia). Both systems play an important role in everyday functioning.

A “normal” person isn’t bothered by the touch of their clothes against their skin, but to someone with SPD the feel of certain materials against their skin might make them feel like they are on fire. A child with SPD might be sensitive to light touch so they may be fine in small groups, but if they are put in a large group of children where the kids are touching and bumping and poking each other the SPD child might meltdown, run away from the group or push a child that touches them because they can no longer handle the sensory input.

Often when children get overwhelmed by sensory input they go into a”fight, flight or freeze” response. They will “Fight”- Get angry or irritable or rage, they will have a meltdown or tantrum, they will kick, push or hit. The will “Flight”- the might panic, cry, try to run away or try to remove themselves from the situation, they will try to hide or they will withdraw. They will “Freeze”- they won’t move or speak or respond, they will just curl up and get quiet.

Phew… Are you overwhelmed yet? Yeah, me too. . . where a child is frustrated and

Sensory Processing Disorder is not a well-known disorder and many pediatricians, doctors, and teachers do not know about the disorder. Children silently suffer and get labeled as behavior problems, when in reality they are suffering from SPD. Parents get made to feel like horrible people who don’t discipline their children, or who don’t discipline them correctly and people feel the need to tell parents of SPD children they are doing a shit job of parenting. They are not. They are doing the best job they can often not knowing that SPD is the cause for their children’s behavior. This needs to change. We need to educate the doctors and teachers and other people who come in contact with children so they can help point the parents of SPD children to helpful resources so they can help these children and the earlier the better. . .

This is another step forward on a very long, very hard and tearful journey towards helping my child.

Sensory Seekers and Sensory Avoiders

Sensory Processing Issues Explained

The Vestibular System

The Out of Sync Child

Raising a Sensory Smart Child

This is Part Four in the SPD Series
Read Post One Here: The Day My World Came Crashing Down
Post Two Here: Trying to Move Forward and Getting No Traction
And Post Three Here: A Spark of Hope

A Spark of Hope

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I tried a third school, a church school, with no better luck. He continued to have problems, I kept getting phone calls, I kept having to leave work to come get him. He lasted three days before I decided I couldn’t leave him in that place. I watched the “teachers” putting some children down for a nap and how they were interacting with the kids appalled me. I knew I wouldn’t bring him back to that place. There had to be another option, my sister had used an in home daycare with my niece, but they lived across town. I had a flash of asking to move in with her so we could use it also but I knew it was unrealistic.

I started looking for in-home daycare’s with fewer children and therefore less sensory overload. I literally started asking every person that I knew, in hopes I would find a lead. I interviewed a nanny and was prepared to pay more money than I could really afford, but in the end, she wanted even more money than I could pay. I found a lady willing to watch him, I wasn’t totally comfortable with her but I felt like I had my back against the wall. I was having to leave work too often and I didn’t want to get fired and I could keep looking for someone better.

While I continued hunting for somewhere to leave my child that I liked I also reached out to a mother in my Mom’s group. She is a Physical Therapist and I turned to her for advice since I thought his behavior was sensory related. She said I could bring him in for a free unofficial evaluation.

I met with her on a Friday and told her Nate’s story. How he was a head banger when he was a baby. How he crawled at 4 months and walked at 9 months. How he was always go- go-go. How he chewed his shirts and pulled off little pieces of his diapers when he was in diapers. how he would spit out a mouthful of food if I happened to miss that there was a tomato or onion mixed in. How he wouldn’t try new foods. how he only wanted to wear “comfy pants.” How he would literally have a meltdown if I didn’t dry my hands after washing the dishes if I turned to help him and touched him with wet hands. How he never wanted to sleep even when you cold tell he was exhausted, even when he had been a baby. How he struggled severely at school. How he struggled with transitions.. . . I went on and on.

She listed to all I had to say and she told me, “Oh yes, He has Sensory Processing Disorder.”

I was relieved to have an answer. I felt hope. I had a diagnosis.

Now, what the fuck is Sensory Processing Disorder?

Finally, a step forward on a very long, very hard and tearful journey towards helping my child.

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This is the Third Post in SPD Series.
Read Post One Here: The Day My World Came Crashing Down
Read Post Two Here: Trying to Move Forward and Getting No Traction

Trying to Move Forward and Getting No Traction

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I frantically searched for a new school to place my child in. I found a Montessori school with a huge outdoor space and a low child to student ratio. It looked like it could be a nice place so I decided we would give it a try. I thought 17 students for 1 teacher was way too many so I specifically sought out a place with a lower student to teacher ratio.

I knew my son struggled with transitions so I warned the teachers and school personnel about it. To say adjusting to the new school was a struggle is an understatement. His first day was rough, but he survived. . . barely. I got called on Tuesday to come get him because he had hit another child. When I came to get him I was swarmed by the entire staff. We talked about my son and his history. I talked about how he was a head banger when he was little and how after a certain teacher had left his previous school he started to fall apart. He struggled with transitions, and on and on.

They gave me some advice and I left feeling a little bit better. I had known the first week was going to be a rough one.

It didn’t get any better. The next day he continued to struggle. He hit the teacher, he ran outside and then lost his outside privileges, he hid in the reading corner and tried to hide behind the bookshelf, he cursed. They separated him from the other kids to calm down and he ate lunch with their behavioral specialist. This behavior continued through the week. He was not adjusting at all.

Then it came again… on the following Monday, this school told me that my child was too disruptive and that they thought I should look somewhere else. They told me my child’s behavior was defiant and the fact that he couldn’t look the adults in the eye when they were trying to talk to him was atypical behavior. They made me feel like a shitty parent with a deviant child who had behavioral issues. I knew my child had some issues, but I didn’t believe they were behavioral. As I slowly pulled pieces together from his experiences in school together, I began to believe my sons’ issues were sensory related. I felt he became easily overwhelmed by all the transitions and switching of teachers and activities. I felt like he went easily into sensory overload.

In the week he had been at the school I had tried to make him a flip book of the different transitions to try to help him and I was surprised at how many there were. Start off in the main room with all the children, move to the classroom, circle time, snack time, outside time, lunch time, nap time in a different room, snack time again, circle time again, move into the main room for pick up. That is an awful lot of transitions for a child that doesn’t do well with transitions. And honestly, I was just figuring out exactly what that phrase “struggles with transitions” meant. Actually seeing how many transitions our children make at school kind of floored me, I could only imagine how all the transitions made my child feel.

I called my therapist friend. We talked, she reassured me that most of his behavior was normal child behavior. I recalled a conversation we had had previously about eye contact. and how we had talked about how some children don’t look at adults in the eyes because it can feel very threatening, but it’s not atypical behavior, she remembered and agreed. Together we ruled out a diagnosis of Autism, even though using some techniques that work well with autistic children all worked well for him. She agreed he probably fell into the category of Highly Sensitive Children and we talked about sensory overload. . . We decided a lot of his behaviors could be classified as normal, but you could definitely tell there were some issues there somewhere. She didn’t feel like it was behavioral related, we kept coming back to sensory…I felt less like a shitty parent after our conversation, but my stress level was through the roof. What was I going to do with my son? I couldn’t quit my job because we need the income.

This was the second stumble of a step on a very long, very hard and tearful journey towards helping my child.

To be continued. . .

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Second Post in SPD Series
Read The First Post Here: The Day My World Came Crashing Down

The Day My World Came Crashing Down

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As I sat in your office crying after you told me my son could no longer attend your school you had the gall to ask me “How are you feeling?”  It still bothers me to this day that you asked me this question.  Of all the things you could say, what possessed you to ask me “How are you feeling?” The question made me feel like I was in therapy.  I almost blurted out “What kind of fucking question is that?  How do you think I’m fucking feeling?” but instead I let the rage spiral around inside me and between the sobs and the tears I managed to say “Devastated”.

After I got that one word out I was able to continue some.  “Is there any way he could stay?” I asked because the maternal instinct said I should fight for my child even though somewhere in the dark corners of my heart I knew that he hadn’t liked it there in a long while.  She said No.  She said that they had tried to work with him, but that other parents had also raised concerns about my child.

WTF?  As if I wasn’t already angry “Why am I just now hearing that other parents are concerned about my child? Isn’t that something that I should have been told?” I asked and then I continued “I feel like I wasn’t communicated with honestly about my son’s behavior in school.  I feel like the teachers focused on the positive things instead of the negative so I wasn’t getting an accurate picture of what was going on. I feel like only one teacher (who wasn’t even his teacher but was with him here and there) actually had been telling me the truth about him.”

She agreed that the communication could have been better not that it made a difference at this point in time.  I had asked the teachers and the director on numerous occasions what they thought was going on, why my child seemed unhappy at their school.  The best I got was they thought he was just a very sensitive child and that when you tell him “No” it just cuts straight through to his little soul and brings him pain. I didn’t quite buy the explanation and felt there was more to the problem.

The director then told me a story about the only other child they had kicked out of their facility and how he had moved passed his early childhood issues especially when he became involved in sports.

She meant to tell the story to make me feel better.

It didn’t.

I was still devastated and I was still pissed off.

“Happy Early Fucking Birthday to me,” I thought.  My 3.5-year-old was kicked out of school for pushing and kicking another child because you know, kids don’t do things like that.. .

Months later it still bothers me that she asked me that question, but I no longer bear a grudge towards the school or the staff.  This was the first stumble of a step on a very long, very hard and tearful journey towards helping my child.

To be continued. . .