“Perfect”…Or, What I Wish I Said To The Mother Who Commented On My Son

A number of years ago, while my SPD son was in the midst of his therapy and regaining his hearing, I took him to an amusement park wearing a “child leash” attached to his backpack. I was always against child leashes, but I relented for his safety, so he wouldn’t get lost because if he did, he had no skills to help himself be located. A mother looked down at him and whispered a comment to her daughter regarding my son just loud enough for me and my daughter to hear……Here is what I wish I said to her……

I’d never put your brother on a leash!”

I hear you judge my parental decisions

And attempts to keep my son safe.

 

How lucky for you

That your child is perfect.

Perfect hearing.

Perfect behavior.

Perfect neuro-chemistry.

 

How fortunate

That your child was born

Without imperfection.

Without disability.

Without anything to cause you concern

Or the need to provide extra security

To keep him safe.

 

How nice for you

That you will never know

The fear that your child

Will not be able to help himself

Cannot communicate his need

Cannot hear you call his name.

 

It must be comforting for you

To judge other people

To believe your way

Is the only way.

To offer advice

Unsolicited

Passively

Aggressively

Because your child has been raised

Perfectly.

 

Does it give you confidence?

Joy?

To know that I envy you

Not needing to secure your child to keep him safe

Not needing special passes to avoid crowds

Or quiet areas to de-escalate

Or devices and sign language to communicate

Not having to tell ride operators to look for your signal to stop the ride if needed

Not enduring the stares and judgements of others.

Being able to enjoy your perfect child

Without fear or complication?

 

Have you calmed a sensory meltdown?

Explained your child to a group of children?

Taught yourself sign language?

Applied for handicap access?

Been up all night providing deep pressure to muscle joints?

Counted seizures?

How good for you

That you have not.

 

I guess that makes you the perfect person

To comment

Stare

And judge

My non-perfect

Son.

 

 

 

 

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Sensory Overload: It’s Not Just for SPD Kids

I was in the park on July 4th attending an Independence Day city celebration. The day was hot – in the 80’s – and there was little shade to be found. Music was blaring over the loud speakers and crowds upon crowds of people were crashing into each other trying to get free BBQ or a chance at the pony rides.

While waiting with my sensory kiddo for the highly sought after pony ride, I noticed a newborn, under a month old, struggling in his mother’s arms. He was very agitated, squirming and crying. The mother, misreading the infant’s cues, continued to try to stick her breast in his mouth to feed him, but he would have none of it.

I wanted to shout, “He’s not hungry. He’s hot. He’s tired. He’s overloaded.”

Of course, I said nothing, but instead watched as she put her child into a hot car seat/stroller. I could only imagine how that poor infant felt – after being in a comfortable, quiet, dark womb, floating, for 9 months, to be bombarded with heat, noise, and strangers bumping into him. Then to have someone try to shove food in his mouth as a way to “calm” him.

The only way to calm him, at that point, would be to get him into the shade, into a quiet location, or in an air-conditioned room.

As the mother of a child with sensory integration/processing disorder, I’ve become more keenly aware of the sensory bombardments we get on an hourly basis, and I’ve become more sensitive to how that sensory input can affect all individuals, not just those with difficulties processing it. Have you ever been in a room and the lights gave you a headache? Or have you even smelled a scent that made you nausous? Or heard a sound that reminded you of nails on a chalkboard? Or even felt the urge to tap your foot, chew your pencil, or just get up and move around? All of that is a reaction to sensory overload, or the need to get more sensory input in your system. We all have our sensory threshold – that point when the lights are too bright, the smell too strong, or the sound too annoying. And if we don’t have enough sensory stimulation, then we try to create it for ourselves to fill the deficit – like the urge to chew on something or move and fidget. It’s not unique to children with SPD, nor is it an issue. It’s part of our biology, the need to maintain balance in our systems. When a person has difficulty regulating their sensory input (every sound is too loud or most lights are too bright), then it is a “disorder” which is interfering in quality of life. These are the extreme cases, like my child’s.

Infants are born with these sensitivities. After spending 9 months in a womb that is the perfect temperature, devoid of light and most sound, they need to learn how to process the different sensory experiences that exist on “the outside.” Think of how your eyes need to adjust to the light when you come inside from the sun, or how you need to get used to the brightness if you are coming from inside a building – that’s what a newborn must do. Most are able to make the adjustment in a few months (you’ll notice it as they focus more on sights and sounds outside their immediate range). Some kids, however,  either due to biology or environmental factors, never “learn” to process this information. And most of us can process it, but we have varying degrees of threshold.

I notice this in my own high school classroom. The white walls and bright fluorescent lights are a sensory nightmare for many of my students. In fact, when I first was assigned the room, it took me a few months before I could work there without getting headaches. To compensate, I keep some of the lights off, basking the room in semi darkness, which makes it cooler and calmer for all students. I keep blankets in my classroom for students who have a low tolerance for cold, and I provide students with fidgets (such as play dough and foot rests) to help them when they are seeking sensory stimulation. The corner of my room is a “quiet corner” with a comfy chair for kids who need to “calm down” or who just need “space.” Next I plan to provide flexible seating – yoga balls, seat cushions, and beanbag chairs – for students who cannot stand to sit in those stiff uncomfortable chairs for 90 minutes straight.
Although some of my peers think I’m insane, I know enough about sensory overload to recognize it in my own students, and I see the “triggers” that can cause it in my classroom. A comfortable child is a child ready to learn. A child who is fighting his own eyes, ears, mouth, and body cannot possibly concentrate, and therefore cannot learn or even act appropriately in a class environment.

I also have become keen in recognizing these sensory issues in other children. This is not to say every kids I see has SPD, but they have simply hit their threshold and are “melting down” or seeking stimulation. That day in the park, the infant wasn’t the only child who had difficulties with the sensory stimulation. I saw many children, mostly boys, running around in circles with no direction;I saw many kids, mostly girls, turn into drama queens and melt into a puddle of tears over the smallest misunderstanding. And I saw many parents of both genders either ignoring their children’s cries for relief or ignorant to the fact that that’s what their children were doing. It’s great to want to celebrate a holiday, have your child ride the pony, dress up in red, white, and blue, and dance to the music blaring over the park grass. Its a family perfect holiday, right? But kids and even adults need to realize that a “perfect” holiday is when everyone is relaxed and comfortable enough to enjoy it. Screaming, over stimulated children and sensory weary adults do not make for an enjoyable experience. Recognizing the signs can prevent meltdowns and hot tempers and make every event a more memorable – and sensory safe – time.

 

Open Letter to the Mom Whose Son Was Expelled From “Finding Dory”

3 Year Old With Special Needs Kicked Out of Theater

Dear Mom,

I feel for you. I really truly do. I know what you are going through. I’ve been there.

My son is 6 years old and has developmental delays and sensory processing disorder because of sensory deprivation during his formative years (he was deaf). He often presents with autism like characteristics and has been in therapy for 3 years. I am also a teacher and my husband is a Special Education specialist. Yet we too have been there….

Your son is 3, so I’m guessing he’s “newly diagnosed” on the spectrum and I’m guessing you are a new autism mom. I know how overwhelmed you must feel, how much information and “advice” is coming at you, how you long to give your child a normal childhood, and the frustration you feel when it doesn’t work out as planned.  I know the stares, the questions, the judgments, and even the well-meaning looks of sympathy that make you want to crawl into a hole and never emerge. I’ve been there, too.

I’m about to tell you something I’ve told only my closest family and friends. We were kicked out of a hotel back when my son was 4. Yes, a hotel. A well-known chain too – you’d recognize the name if I said it. We were “Rewards Club” members. We took our family overnight because it had a pool. Our plan was to sleep in the big comfy beds, and wake up to swim in the morning. My son was excited to be there. As most sensory seekers, he explored the room, ran around with excitement, laughed, and enjoyed the space. Unfortunately, we were on the second floor and someone was below us. Management called up that they downstairs guest was “complaining” about the noise. Now, even though my son does have SPD, I did not feel he was doing anything more than a toddler would do. He was not overly loud, nor was he having a meltdown. No, he was having fun. That’s it. But it was too much for Mr. Downstairs. OK, we quiet him down and my husband took a walk to the front desk to explain the situation. Yes, we TOLD them. But a second call came in. Our only resolve was to give the kids a quick bath, get them to bed early, and wake up early to the promise of a swim.

We got up early to prepare them for the pool. We got their free breakfast and ate in the room. My son, once again, was excited, but not overly loud. We got a third call from the front desk, and my husband went down a second time to tell them again about our situation. Mr. Downstairs, however would not stop. Soon, a knock on the door. The police. Mr. Downstairs called the cops on us, claiming he was hearing “banging” and crying. I was in tears, my daughter was terrified, my husband furious. We told the cops the same thing he told the front desk two times before, and we relayed our experience over the last 12 hours. The cop apologized, stated they had to respond, and went to talk to the front desk. By then we were done. We packed up and left. No pool. No vacation. Just home.

We learned a few lessons that day, the biggest one is that we now always ask for first floor rooms away from general guest and inform them during the reservation process why. We also learned how alone we could feel.

My message to you is you are not alone. You may feel alone, but you are not. There’s nothing wrong with wanting your child to have normal experiences. He cannot learn “normal” behaviors unless he is in situations that force him to use his skills to adapt. However, as someone who has learned the hard way, I can offer some advice:

  1. People will not be understanding – They will be angry you interrupted their night out, they will be judgmental that you aren’t a good mother, they may even be sympathetic, but unless they have dealt with it first hand, they will not be understanding. I know it’s hard, but you will get used to the stares. You will become immune to the shaking heads, and you will have a ready response for the  well-meaning “advice” that comes your way. Just expect that people will not understand and if someone does show true understanding, they are either a teacher, a mother of a special needs child, or a truly beautiful soul.
  2. Have an escape plan – I always try to sit or stand near exits. If my child because too overwhelmed I escape quietly with him. I often scout places out first before we go there so I can form my plan of quick exit.
  3. Have space – ASD and SPD kids become overwhelmed when they do not have the space to “react” to their environment. I often save myself a whole table, a corner, or several seats in a row so my son has room to acclimate himself to his surroundings.
  4. Sensory tools are your friend, and his – I used to carry a “sensory kit” with me, which included noise blocking headphones, a weighted blanket or vest, a pressure vest, fidgets, chewies, snacks to munch on, and his favorite toy. I often went through several of these tools during an outing. These help the child calm themselves down when they are unable to do it alone.
  5. Know his limitations – If he can only sit for 15 minutes, that’s fine. Maybe next time it will be 20 minutes. Forcing a kid to do something overwhelming is the sure way to hit a meltdown. My son used to be unable to sit through his sister’s recitals. My husband and I took turns sitting with him in the lobby and took him into the theater only during her numbers. This year he not only sat through her recital, but sat through TWO shows. It’s all about building endurance. Let him participate in activities in his way, while gently guiding him to take chances and push his limits, but do not force him.
  6. Take advantage of special programs – Sensory safe movie viewings at theaters, special needs days at amusement parks or indoor play areas, Caring Santa/Easter Bunny programs at the mall during holidays, adapted sports, and even “front of the line” passes at theme parks all help not only give your child a “normal” childhood experience, but also alleviate the stress of an outing AND help teach your child valuable skills and socialization. Most important, it provides networking so you can meet other parents with similar struggles.
  7. Scout out areas first – Birthday parties are the worst, especially in unfamiliar settings. Scout them out first if you can. Do they play loud music over the speaker? How crowded are they? Is the event private, or will general public be allowed in? Are the activities developmentally appropriate for him? Are there quiet spaces for him to de-escalate or take a sensory break? How easily can you watch him? How can he participate in the activities? Refer back to #2 and #3 and have a plan.
  8. Learn to see things through his eyes – Is it too dark? Too loud? Too crowded? Too this or too that? Know the triggers, help him recognize them, prepare him for them, and then help him through them.
  9. Never let him hear you or others talk about him – My son overhears other kids talk about him all the time. At birthday parties kids approach me and ask, “Why does he act this way?” He hears it, recognizes he is “different” somehow, and it saddens and angers him. Kids go up to him and say, “Why do you do that? Why can’t you do this???” and he just cries. He knows he’s struggling so he doesn’t need to hear others recognize it. His confidence is already low. He needs to told what he CAN do, not what he CAN’T do.
  10. Accept help – In the beginning I always brought a tag team to help out. But if you are alone and someone offers to help, accept it. Don’t be proud. I’m not talking about the well-meaning and sometimes sanctimonious advice type of help (“just discipline him…you should take that away from him….don’t let him do that….etc”), but real help. The lady who offers to hold your bag while you deal with a meltdown. The cashier who lets you get out of line to help your son and then lets you jump back in. The event coordinator who recognizes a meltdown and lets you go into an employee only room so he can calm down. Don’t be embarrassed to accept help. Just accept it. Refer to #1. These are the beautiful souls sent to help you when you need it most.
  11. Know it does get better – He will learn. He will grow. He will cope. And you will learn, grow, and cope as well. It’s a long journey and people along the way won’t understand, but it’s your journey with your child. No one else should judge that.

Your theater experience will become my hotel incident. You will look back at it as the moment when you realize that it’s not about how you parent, but that you parent the way your child needs. Your child can experience his childhood”normally;” it  just take experience, patience and a few tweaks in your perspective of what normal really means.

God bless and best of luck.

 

 

 

 

The Day I Met An Angel

I’m not the type of person to trumpet my spiritual beliefs from the highest mountaintop, flood social media with memes and online requests for declarations of others beliefs, or even argue religious and spiritual issues in the presences of others. I have researched and studied many religious belief systems, from Wicca to Buddhism to Tao to UU to just general New Age, and one thing I have discovered is that there is a “higher power,” a connection to the Universe, a mystical and unexplained energy that brings things to us. Call it God, call it fate, call it Karma, but it’s there.

I encountered it the day I met an angel.

A real angel.

Laugh if you will, but she was an angel.

It was 4 years ago today. My son was sick and had been for several months. His pediatrician, however, claimed she could find no illness. He exhibited the symptoms of an ear infection – runny nose, holding his ears, low grade temp, irritability – since he was just under a year old, but, with the exception of one round of antibiotics 6 months prior, she said my son’s ears were clear. When he started not responding to sounds, ceased his language growth, and started making strange guttural sounds we knew something was wrong, but we got no support from his doctor. Four days prior, just days before his 2nd birthday, I took him in once again with the same array of symptoms, and once again, I was told his ears were clear. When I asked about his behaviors, she referred me to Early Intervention, stating he probably had a delay or a disability and that they would help. The fact he had delays was obvious, but once again, I left the office feeling I wasted my time. Frustrated and angry, I tried to grapple with the impending knowledge that something was truly wrong with my son.

I spent the next few days crying. I trusted his doctor, although my gutt was telling me something wasn’t adding up. I began to believe maybe she was right, that my son’s problems wasn’t physical but more cognitive. For any parent, this realization is overwhelming, but given the months of going back and forth to the doctors with no answers I was completely drowning in pain and confusion. What was wrong with my son?

I was in a completely desperate state. I had no clue how to proceed. Looking back, I should have pressed it with his doctor, should have sought additional opinions, should have gone with my gutt, but I was so upset that I couldn’t rationalize anything. I didn’t know where to turn……

I don’t know how I ended up there, but I ended up at the church down the street from my house. To this day, I don’t recall why I went, how I got there, or what I was doing prior to my visit. I know it was 4 days after that doctor’s visit, I know my daughter was with me, and I know I was crying constantly. I remember my daughter asking me why we were there, and I just told her I had to talk to God.

It was dark out, although I cannot recall how late. My daughter and I went into the lower church where people went to pray. I knelt down, and prayed for guidance, for insight, for help for my son. I prayed for answers. I was crying, not quite sobbing, but definitely upset. My eyes were raw from days of tearful emotion, my color was pale, my nose was red. I must have looked a mess to any bystander.

It was then a woman approached me in the pew.

“You look like you need a shoulder,” she said.

I looked at her and couldn’t hold back. I cried, sobbed, on this strangers shoulder. She stroked my hair and gave words of comfort that it was going to be ok. I just cried.

When I lifted my head up, she asked me if I wanted to share what was wrong, and all I could say is, “My son.” I told her nothing more. Not his age, not his situation. Not that I knew he was sick – that something was wrong – and his doctor can’t seem to identify it. Not that he didn’t seem to be able to respond to sound, that he had stopped talking, that he seemed in pain.

“God is telling me to tell you that he will fix what is broken,” she said. “He will make your son whole.”

These words brought such comfort to me that I sobbed again, this time out of happiness. Sure, it sounded very vague, very much like what you might hear in a fortune cookie, but it was just what I needed to hear at that time. I had some hope, a renewed faith, that my son would be healed.

We spoke a bit more – I don’t recall the topic or what was said – and she soon resumed her original seat. My daughter and I left the church.

“Who was that, Mommy?” my daughter asked as we walked to the car.

“An angel,” I replied. “God sends them sometimes when we need them most.”

“Where were her wings?” my 4 year old asked.

“No, He sends them in different ways. Sometimes as ordinary people, sometimes as a whisper in your ear that you barely hear, sometimes as a sign, but he sends them.” I wasn’t making it up. It was always my belief that we get the answers we need when we need them most. How the message is delivered varies, but it’s always there. Call it fate if you will, but it happens. And this, I felt, was one of those moments.

That night, my son was in extreme pain, holding his ears, crying inconsolably, hanging his head upside down. As he was rolling on the floor screaming, I called his pedi, but instead got the on-call doctor. She heard my son in the background and told me to bring him in right away. It was nearly 9 at night, but she said she’d open her office for use. “He needs help right away,” I recall her saying.

It took her one look in his ears to have our answers – not only were his ears infected, but they were full of thick fluid (known as ear glue). The ears were so full that she could not see his eardrum. She theorized the ears were infected for a number of months and that he has had diminished hearing for that time. He was probably so used to the pain, she believed, that he didn’t react to it until it got so intense that it was unbearable. The ear glue was thickened infected fluid that didn’t drain from his ears and he probably was hearing “like he was underwater.”

She put it plainly to me, “He can’t hear.”

Again, I cried, this time out of relief, and out of anger for the pain he had been feeling for months that went untreated.

She gave him strong antibiotics, referred him to an ENT, and gave me more advice on how to make him comfortable.

Another angel.

I switched to her as my son’s pedi and never saw the other one again. My anger over her negligence, and my own guilt over not going with my instinct and pressing the issues are emotions I’m still dealing with 4 years later, but his road to recovery did begin on that day, with those angels.

My son has had three ear surgeries, had tubes placed in his ears, has seen multiple specialists, and has his hearing tested twice a year. We will never know how impaired his hearing was prior to his treatment, but we know now his hearing is 100% normal. That year, however, damaged his development. He is delayed in many areas, and still struggles to learn to learn to speak. He had to learn language all over again, and now deals with sensory issues from that year of sensory deprivation. He’s in special programs in school to help him regulate his sensory input, and to help him develop his speech and social skills. Our world changed that day, and we began a journey to give our son back his voice.

But it was an angel that harkened to me the message that he would be saved and “made whole.” And an angel that showed us the answers we needed in order to begin his recovery.

God never told us how long his recovery would be, nor how long it would be before he was made whole again, but I am confident he will be. We are on that road now and though I wish it were quicker, I also realize sometimes our plans are not how God intends them to be. But it is hard to remember a day like that day and not see a greater power’s hand in it. Yes, you can chock it up to coincidence or fate, but I feel a greater pull in the events than that. Whatever you want to call it, it was a day when we got the answers we needed when we needed it most.

 

 

 

 

 

 

 

 

 

A Very Special Easter Bunny and A Very Special Santa For Very Special Kids

It’s quite ironic that the two characters most aimed towards the imagination of young children, Santa Claus and the Easter Bunny, also contain the most stress for kids when they go to visit them.

Picture it – lines of young children at the mall. Shoppers crowding around them, lights blaring, music echoing over the load speakers, uncomfortable fancy clothes, crowding in the lines. A domino effect of screaming kids begin: first one kid, then the next, then a few more kids, then a line of children, crying, wringing in their parents arms, contorting themselves in odd positions as they attempt to escape their mother’s grasp and dart from the space in line they have occupied for the last 20 minutes. By the time they meet the old man with the white beard, or the person in the giant bunny suit, they are overwhelmed, over tired, and over stimulated.

And probably scared to death…..

For kids with challenges and disabilities, this experience, which is stressful enough for all children,  is a nightmare. Whatever their challenge, waiting in line with so much sensory stimulation is too overwhelming and can cause meltdowns. By the time they reach the big guy in red or bunny, there’s no way the photographer can get any sort of descent shot in the three takes allowed. That is, if they can even get the child to sit on Santa’s lap or even come near the guy in the big headed huge eyed bunny suit.

And let’s not forget the discomfort of those with physical disabilities, like those in wheelchairs, who cannot navigate the “holding areas,” wait in lines, or even approach their holiday characters.

My son has sensory integration processing disorder (SPD) which in its simplest form means he has difficulty processing and dealing with sensory input. Certain sights, sounds, and situations cause sensory overload, producing a “fight or flight” response from him. This disorder, acquired during sensory deprivation when he lost his hearing for a year, has made it challenging for him to visit Santa Claus or Easter Bunny each year. We’ve made it to their laps, but rarely if ever got a photo of him in which he didn’t look stressed or distracted. At least he was able to sit on their laps, I rationalized. Some kids can’t even do that. Many parents of special needs children have given up trying to give their kid the seasonal experience enjoyed by other children, meeting Santa or the Easter Bunny.

Thanks to a program in the Simon Malls, that has changed. “A Caring Santa” and “A Caring Bunny” provides a stress free environment for students with special needs to meet their holiday character. The program started in my area five years ago with “A Caring Santa” and they added an Easter Bunny visit this year. We stumbled upon the program in December, which happened to be held on my son’s 5th birthday. I had no idea what to expect. I thought, at most, that they would allow the photographer to take multiple shots, or perhaps more understanding staff when a meltdown in line occurred, or ideally providing kids with disabilities to move to the front of the lines.

What we got was so much more….

It didn’t occur to me at first that the times of the event were before the mall’s hours of operations. Allowing these kids to visit Santa prior to the mall opening means they avoid the crowds of holiday shoppers. This automatically eliminates one of obstacles they face with sensory stimulation. A very wise idea.

Then came the complete outpouring of support, and the realization that these staff members were trained to handle kids with all challenges. We were stopped when entering the area directly in front of Santa’s seating and asked if we were here for the “special event.” When we replied in the affirmative, we were ushered to a reception area with chairs and tables decorated in simple holiday decor, told to “grab a snack and art project” and then given a number. My mother, who attended with us, stayed back, thinking it was just for the kids, but she was told to join us because “this is for the families as well.” The “snacks” was a full breakfast spread  provided by Au Bon Pain- bagels, scones, fresh fruit, large muffins, coffee, juice, danishes. The arts and crafts ranged from “Santa kits” to simple coloring.

I watched as the staff gave each family a “count down” of their appointment: “You’re number 24, correct?” they’d whisper. “Number 20 is up now, so you have about 10 minutes if you want to prepare your child.”

Anyone with a special needs child knows forewarning is paramount to comfort.

I noticed the escalators were all turned off – another stimuli that scares and overwhelms some children – and the Christmas music, usually blaring through the mall, was off. To our left, the lines began to form of parents and screaming general population kids waiting for the mall to officially open so they could have their chance to see Santa as well.

My daughter, a general ed student, looked at the line and said, “Do we have to get in THAT line?”

“No,” I said. “We get to wait right here, eat our breakfast, and wait for our number to be called.”

“Cool!” she replied.

I explained to her the reason we get to do this: because Santa and nice people who know about her brother’s difficulties have set this up so he and kids with other challenges won’t be scared.

“This helps them meet Santa,” I added. “And we should be very thankful to them for helping.”

And how nice it was that Santa set it up on his birthday.

My son, in the meantime, sat happily eating his bagel, looking around, and smiling as if he believed they really did set this up just for him. He was stress free, comfortable, relaxed, and very very happy. We took him to see Santa from a distance a few times as we waited, and he smiled.

When our number was called, it was a relaxed experience. My daughter approached him as she always does, but this time my son ran right up to him as well. He hugged Santa, he laughed, he smiled, he sat right next to him and snuggled close and – this was the most amazing thing – he looked at the camera and smiled. No distractions, looking around at everyone else in line, covering his ears, or trying to shield his eyes. He was relaxed, focused, and smiling. The photographer took multiple photos – 5 or 6 – but he got the shot on the  second take. The result – the best Christmas picture we’ve ever had of him with Santa.

After our visit, we hung around some more, ate some more, and observed the caring staff help each child individually. One child was too afraid to enter Santa’s seating area, so he and the photographer met the family at their table. Another time, a wheelchair bound child couldn’t navigate the photo area, so once again the photo area came to him.

As the scheduled mall opening time grew near, I heard staff talking.

“We still have three more families….” one staffer asked.

“OK, don’t open the general line until those people have had their turn,” the manager replied.

Then the manager came over to me. “Do you mind if we turn the escalator on now?” she asked. “Will it bother him?”

I replied he was fine with the escalator, and thanked her for the program. She told me they had partnered with Autism Speaks and a council for parents of children with special needs to put it together. Last year, she said, only about 20 families took advantage of the program, but this year, it doubled to 40+ families. In fact she was wondering if they needed to open the program up even earlier, allowing for 3 hours of visiting time instead of the 2 hours they scheduled for today. And, she added, for the first time the Easter Bunny would be participating in the spring.

I was overwhelmed with gratitude that these people understood my son and his challenges and that they were able to provide such a safe environment for him and our family. No people staring at us in line, no stress for him or me as I try to calm him down, no worrying about whether or not they will “catch him” looking at the camera. Just a peaceful and fun environment for him and us to be like other families. I cried walking out of the mall as I stared at the his happy and relaxed picture.

I uploaded the photo to Facebook and was bombarded by comments, both on and off line, that my son looked so content and at ease. Everyone agreed it was his best photo with Santa yet.

Last week, on Palm Sunday, the Easter Bunny did come as promised, and once again we participated in the relaxed atmosphere before the mall opened. I told my son how we were going to see the bunny just like we saw Santa, and he smiled. He was so happy when we walked in that once again it was like he thought they did this all for him. His photo was once again the best he’s ever taken with the bunny, and the photography snapped many shots of him hugging the bunny, kissing the bunny, and even kissing his sister. We continue to be amazed at how well trained and compassionate the staff is and grateful that such a program exist. I only wish more parents knew about it and participated as the more their child experiences it, the more it helps their child be more comfortable even in non-ideal situation.

My kid did see Santa and the Easter Bunny, and he did enjoy it, thanks to Simon Malls.

Sensory Concerns #1: The Challenge of Birthday Parties

As anyone who has dealt with young children know, birthday parties can be overwhelming. Loud sounds, screaming, laughing, crying. Bright lights. Unfamiliar faces. Crowds. It’s a sensory nightmare, and bound to cause a few meltdowns as overstimulated and perhaps overtired children succumb to sensory overload.

Now imagine that same scenario with a child who is hypersensitive to sensory stimulation.

Children with Sensory Integration Processing Disorder have difficulty processing sensory input. Lights which may seem fine to most may hurt their eyes, or sounds that many may simply filter out may sound like nails on a chalkboard. Everyone has their own “sensory threshold,” the amount of sensory stimulation they can deal with before it becomes “annoying” or overwhelming (that’s why some sounds bother some people but not others), but kids with SPD are over or under sensitive to the stimuli. In essence, sound, touch, taste, sights, and smells or any combination of them can overwhelm them, causing a fight or flight reaction.

Kids can be born with these sensitivities, or they can develop them. In the case of my son, he acquired these reactions after nearly a year of sensory deprivation, a loss of hearing. In the beginning, he would scream at sounds and cover his ears, or shield his eyes when he couldn’t deal with the visual overload. Now, his therapy has taught his body ways to integrate the stimuli, and has taught him coping techniques to deal with overstimulation until he can self regulate. We also have several “tools” to help him regulate if needed. (We use these tools less and less frequently as he gains more and more body awareness.)

Birthday parties for kids with SPD are usually nightmares. My son has learned to adjust, but he still has challenges. He will usually seek out a “safe spot” at a party upon first entering. That’s a quiet corner or area where he can run when he feels overwhelmed. He usually finds a place in natural sunlight, or in between furniture. That’s his first coping technique.

House parties become especially difficult for him because of the lack of room and ability for him to move around. SPD kids often feel better with movement, so parties with lots of physical activities or room to play (like backyard parties or ones at indoor play areas) suit him best. But even then there are major obstacles to look out for. One inflatable park we have attended is a nightmare for him because of the acoustics. It was in a warehouse, and the sounds of laughing and screaming patrons echoed off the tin walls. He screamed each time we tried to take him into the play area.  Another indoor place we visited had dimmed lighting which caused a visual fear for him. Added to the loud music blasting over the speakers, it felt like a dark haunted house to him.

Of course, we cannot control where someone plans a party for their child, and part of his recovery is teaching him to deal with the overstimulation so he can enjoy “regular life” activities. And so, for each party we attend, I pack my arsenal of sensory tools, including muffling headphones, oral chewies, pressure vests, and weighted vests. I help him find a safe spot, take him into a quiet room (usually a bathroom) when even his safe space is getting crowded, interpret his sign language and nonverbal communication attempts to others, answer questions from curious children who want to know “why does he do that?”  or  “what is he wearing?” and deal with the meltdowns if or when they occur. He doesn’t eat cake or ice cream (sensory issues), so I also try to find an alternative.

When scouting locations for my own kids’ parties, I try to be sensory sensitive so both my kids can enjoy the experience. I need to consider space and crowding, amplification of sound, brightness or dimness of light, and wait time between activities. I search for potential safe spots and always take him there first to check it out. The best parties have allowed opportunities for him to play, climb, jump, and explore, but are not dependent on his participation.  Swim parties are best because the water provides him movement, a calming sound, and the soothing feel reminiscent of being in the womb. In the water, he is most calm and regulated.  He is free.

So imagine your toddler, overwhelmed, tired, full of sugar and ice cream, as you attempt to calm him down …..multiple by 10…..now you might begin to see what my son has learned to deal with, and what he continues to deal with…..

LAMP

We received some excellent news yesterday – James has been approved to be put on a new language and speech program in school and at home. He will be receiving an Ipad with the language program LAMP on it to implement into his daily routine.  LAMP stands for “language acquisition through motor planning” and is based on the neuroscience that motor planning and oral motor planning skills are linked with language and speech skills. It makes sense. When you talk, your brain “plans” a series of motor movements for the mouth, tongue, vocal cords, and breath to execute. That motor planning is no different from the motor planning that it takes your brain to tell your hand to pick up a pencil and write something, or tells your finger to point and apply pressure on something else. The theory is that if you connect motor planning with language, language and speech production increases.

For the past 6 weeks they have been “piloting” this program on James, who had been using GoTalks, sign language, nonverbal gestures, and signal words to communicate as he struggles to express the language that is obviously in his head. His receptive language is excellent – he understands everything – but it’s difficult to express his thoughts with single buttons or sign language that few people understand. So, they introduced LAMP to him on the school’s Ipad and, to use their words, he “took off.”

He began almost immediately forming 2-3 word phrases and sentences using a series of buttons and icons. The sentence is then spoken with a touch of another button to further model speech and give James a “voice.” They added words to his vocabulary daily, and he now uses the ipad independently, seeking it out when he wants to make a request.

But it doesn’t stop there. He also has increased his attempts to verbalize. Since his introduction to the program in December, I have noticed he has begun saying two-word phrases, and I have even heard him approximate whole sentences. He whispers when he talks, as he still does not have the confidence to speak, and he babbles as a child experimenting with sounds does. I told his OT worker two weeks ago that I can finally say, “He’s in the beginning stages of speech now.”

His teachers have noted more verbalization as well, and all that data went into the decision to pair James with the LAMP program full-time and extending it into the home.

It appears as if the program is being piloting throughout the system, and James seems to be one of the first, if not the first, to be a successful “fit” for it. Because of that, they have spent a lot of time on him, with an outside consultant coming in 2-3x a week to observe James, help in data collection, and train his teachers. When the equipment comes in I will have to be trained in it as well, but the hope is that this device and program will not just “give him a voice” but also help him speak. for the first time, they were confident, noting that 90% of students even with the most severe language and speech disorders increase their verbal communication on this program and they “look forward to hearing more (words) from James.”