#30 The Keating Family

I Need To Tell You …

By Lea Keating, SPD mom, advocate, blogger at La La Language founder of SensorySing!

The school Psychologist cut right to the chase. “I need to tell you that your son has Autism Spectrum Disorder.” It was our second meeting, the one where we would discuss Cole’s test results. I was alone this time. Cole had already been observed, and really, how could I concentrate on anything being said anyway with his 2 ½ year old little body alternating between burrowing into my lap and running head first into the walls of the tiny little office? I suppose I sat blank faced and motionless because after a moment she leaned forward, put her hand on mine and repeated, “I need to tell you …”

It took everything I had to keep from clamping my hands tightly over my ears. The earth seemed to stand completely still – I was acutely aware of the harsh fluorescent lights, the roar of the air conditioner, the faint smell of onions as she leaned too close. I didn’t want to hear any more, didn‘t want to feel anymore. Ironic because one of the reasons for the evaluation in the first place was that Cole often assumed the very position I now craved – hands pressed tightly against his ears, blank gaze, slightly rocking. A thought flashed briefly through my head – Aha! I understand. This is self soothing.

I wanted to shout No, No, You‘re wrong… but my heart and my head said “Yes, I already knew.” Cole had been working with two wonderful Early Intervention therapists for over a year already. A speech therapist and a special educator. They were experts in their fields. I was learning so much from them, but Cole was making very little progress. The biggest problem was that we only saw each of them twice a week, and even though we tried different times of the day, Cole was never cooperative. He seemed to have two moods – super high energy running and crashing into everything, or meltdown mode – laying on the floor in hysterics. How could he be learning how to talk and play if he couldn’t calm down enough to interact? Half of his therapy session was spent chasing him around the house, the second half was the therapist giving me a crash course on how to constructively play with him during his rare interactive moments.

About a month after Cole’s diagnosis we went to my niece’s third birthday party. We had begun to really isolate ourselves at that point. Library programs and music classes had been abandoned long before – what was the point? Cole would just wildly run around the room. I tried chasing him and forcing him into the circle, I tried letting him run and “modeling” by staying in the circle … nothing worked and one or both of us would leave the class sobbing. It was becoming clearer and clearer that Cole was not like other children. I dreaded going to this birthday party, but my niece is very special to me and Cole was familiar with her and her house. What he was not familiar with was the noise and the crowd of people we walked into. Hands clamped over his ears he squeezed his head tightly between my knees. Sensing a meltdown I took him upstairs where it was quiet. I sat and rocked him and he started to calm down.

Back downstairs the party was in full swing – kids yelling and running and playing. I felt so bad for Cole – at some points he watched as if he wanted to join in. My best friend came over and offered him a toy baby carriage. I held his hand and started to walk with him pushing it. Soon he was pushing on his own. He stopped briefly to load it up with wooden blocks. Around and around he went pushing the carriage. He had a little loop going. Through the den into the kitchen, past the hallway, into the den. Repeat. Repeat. Repeat. For two hours, Repeat. But he was calm. And more than that, he was engaged. He smiled and stopped and watched the kids and then did another loop. For the first time in over a year my husband and I chatted with adults and ate sitting down and didn’t have to leave the room with a hysterical child. All was going well until they were ready to cut the cake. I had the foresight to take Cole outside – we had been through disastrous “Happy Birthday” songs in the past. I was feeling very pleased with how the whole day went and Cole was now happily outstretched on his belly on the warm driveway drawing great big circles with sidewalk chalk. I couldn’t remember when either of us had last had such a great day.

It was then that another mom came outside. She cheerfully although rather boldly asked, “Does your son get Early Intervention?” “He does” I replied defensively. “Cole is on the Autism Spectrum” – go ahead and try to question my parenting skills – you’re not ruining this day for me lady! “I thought so!” she bubbled. “So is my son!” (I quickly tried to place her son — he was running around with all the kids inside. A bit hyper, maybe slightly quirky, but not at all what I would call “special needs”) She continued … “I need to tell you about Sensory Processing Disorder, Occupational Therapy and the Sensory Diet.”

And so we sat outside and talked for an hour. She called me that same evening, and we talked for two more. I ran out and bought Sensational Kids, and then The Out of Sync Child, and Raising a Sensory Smart Child. From the first chapter, they all made sense. (Pardon the pun!) Cole was a classic sensory seeker. He had his moments of sensitivity, especially to noise, but finally all the running head first into furniture, throwing toys and burrowing under our legs had a meaning. It made sense that pushing the baby carriage with wooden blocks in it was both linear and heavy work and calmed and regulated him enough to “enjoy” the party.

We immediately went for an OT evaluation, and started a Sensory Diet. The difference was incredible. Cole learned how to say his name on day 2 of the diet. We incorporated multisensory activities into all of his therapies and he became a little sponge. Every day we sing, play and move. Three years later I am the super proud Mom of a very bright, very verbal (and still very active!) 5 ½ year old. His diagnosis was changed shortly after starting OT to PDD-NOS. and then this past summer to Asperger’s. Cole has become very proficient at managing his own SPD. He knows intuitively when he needs to jump on the trampoline and when he needs to curl up under a heavy blanket. He starts Kindergarten this year in a wonderful Montessori school that understands how to promote multisensory learning.

I often think back to that moment when I was first given Cole’s diagnosis. How panic and overwhelming fear set in, and my senses shorted out. I can’t imagine feeling that way on a daily – or hourly – basis. We are SO fortunate that Cole was diagnosed so early and has been able to regulate his SPD. I truly believe that his language and comprehension were “locked away” because of his overwhelming sensory modulation issues. I need to tell you … that Sensory Integration therapy and a daily Sensory Diet have changed my son’s life.

I am so very grateful for that wonderful mom who had the courage to share her son’s journey. Thank you for allowing me to share ours.

Posted in 30 SPD Stories in 30 Days, Fundraiser, Sensory Processing Disorder, SPD Foundation | Leave a comment

#28 The Kaylor Family

It Was A Good Day Today
By Jennifer Kaylor, SPD mom and blogger at Reflections

It was a good morning today, a rarity these days, so I savor every single second. By afternoon things were back to our new normal. Our new normal is my son in a complete state of agony, and myself in a complete state of bewilderment, panic, and frustration.

We are visited frequently by storms in our home. These storms always have a calm period before they hit. I sit on pins and needles awaiting their arrival. Their consistency is something I can always count on, but can never predict the when and why.

I watched from the window as my son rode his ATV around the property. He was finally enjoying himself. I should be happy and relaxing in this moment, but I can’t. I know it is only a matter of time before the storm hits. It’s coming, that is a given, but what will bring it is always a mystery.

And here it is: Helmet comes off and gets tossed. Joseph enters the front door sobbing and making growling noises. This due to extreme frustration with the way his clothes are fitting. His underwear is too loose. I suggest changing them. He goes into his room to get new clothes, but doesn’t want me to touch them. Now he is lying on the floor crying and growling due to his sandals not feeling right. He removes them and puts them back on several times and they still don’t feel right, the whole time crying. I suggest socks and his sandals still don’t feel right, so I suggest his school shoes. At this point he is still in a complete state of meltdown growling and writhing on the floor. I send him to his room and tell him he is not going back outside. My heart is pounding, my head is throbbing, I don’t know how much more of this I can take. I am completely clueless and at a loss as to how to help my child.

Joseph was doing the one thing he absolutely loved to do. Wild horses could not pull him off that ATV, so whatever was going on in his body was something completely out of his control. But what was it? I would give my right arm to figure it out so that I could finally give my child some relief from the daily agony that he lived with.

I continued to mention to my sons doctor and psychologist that he seems to be overly sensitive to smells, sounds, clothes, touch, etc. Neither one seemed to be able to give me an explanation as to why, nor a solution. I was completely in the dark.

I had to assure Joseph’s principal and teacher that it was okay for him to go home on the school bus without wearing his winter coat. Joseph can’t tolerate the feeling of layered clothing on his skin. It was only a five minute bus ride so he would not freeze, and if he did, well that would be much more comfortable to him than wearing a coat over a long sleeved shirt guaranteed. Not to mention saving me an entire afternoon of him freaking out over having been forced to wear a coat that made him uncomfortable due to a single wrinkle in the fabric.

In one of my many meetings with our school I was asked if I would consent to allowing the schools OT to test Joseph for sensory sensitivities. The process of finally getting some answers, and help for my son’s sensory sensitivities, began on that day. Joseph was found, in the words of the OT, to be severely affected by his sensory issues. Joseph’s sensory sensitivities not only impacted him adversely at home, but it also greatly interfered with his ability to socialize and learn at school.

So alas, new words were added to my vocabulary, sensory diet. Two very important words that would change Joseph’s quality of life three fold. I learned that a sensory diet had nothing to do with food, but giving Joseph’s body the input it needed so that he could stay regulated during the day. I could now begin to predict the when and why’s of the storms that have been ravaging our home for so long.

Joseph’s sensory diet included things designed specifically to help him and his particular areas of struggle. For example, his severe tactile defensiveness, his skin was so sensitive to touch and clothing textures that it was a nightmare to dress him each morning. Dressing included writhing on the floor screaming and growling due to the way his clothes felt on his skin. He could not stand to be tickled, kissed or hugged. I couldn’t hold my son, or comfort him, because my touch caused extreme discomfort. His OT trained me in a brushing protocol. It was necessary to follow this particular protocol to the letter. Proper training in the technique and absolute consistency was a must for it to work. This took several weeks of daily brushing followed by deep pressure. The result was life changing for Joseph. After it was completed he could better tolerate clothing and unexpected touch. He was much less sensitive, thus resulting in fewer meltdowns. (I need to mention that this part of his sensory diet is not right for every child with SPD or tactile defensiveness. Only your OT can determine if it is appropriate to pursue. The same goes for the rest of his sensory diet; it is designed specifically for his individual needs. Those needs can change over time, so his sensory diet changes with them.)

Vestibular, I get dizzy and sick to my stomach just thinking about spinning. But for Joseph, spinning can give his body several hours of organizing input. This helps him to stay focused and on task. It also helps him to keep his feet on the ground so to speak. Without it his body is constantly craving and seeking the input it needs to function. This may result in him rocking, tipping, or spinning in his chair. His body doesn’t know that it should wait till recess, or after dinner, to get this input.

Joseph’s body doesn’t know that it is inappropriate to get input by doing a cannon ball on the nearest chair, child, or table. The impact of jumping and banging into things is proprioceptive input in his joints and muscles. When his tank of input is depleted his body needs it now, and his body doesn’t care how it gets it. When in this state his brain seems to be shut off and he has little to no control over his actions no matter how dangerous. I have learned that it is much better to keep his input tank on full rather than wait till it is empty, resulting in injuries or a meltdown.

Joseph responds very well to oral input. I was mortified when his teacher informed me that they were giving him gum. My eyes grew wide and all I could picture in my mind was gum in the clothes dryer and all over everything. Gum at school? Gum was strictly banned in school when I was growing up, so this was new. What the gum did was provide oral input. This oral input in turn provided organizing input to Joseph’s brain. With that organizing input he was better able to focus and concentrate on his handwriting, a very difficult task for him. We also use carrot sticks, nuts, or other crunchy foods to help with concentration when doing schoolwork. Crunchy foods, a chewy stick, or chewy band replaces chewing on his clothing or small toys that don’t belong in his mouth.

With the help of Joseph’s OT I now know specifically what his sensory sensitivities are, thus revealing his triggers. Knowing his triggers I can predict what might put him into a state of sensory overload. I can be proactive and provide his body with the necessary input it needs to stay regulated during the day. For the most part that is, roadblocks and potholes still get in our way from time to time.

Joseph is now at a point where he can recognize when his “engine” is running too high, just right, or too low. (His OT refers to his body as an engine to better help him understand it.) I can now ask him how his engine is running. If it is too high, he can tell me and access the appropriate tool to regulate it, for example: his weighted blanket and a quiet room. If his engine is too low and he needs to wake his body up he can jump on the trampoline. If his day at school was too overwhelming, he crawls into his body sock. Stretching in his body sock, made of lycra, provides pressure/input to his muscles and joints, and at the same time removes all visual stimulation. It’s a two for one.

Joseph is no longer in a complete state of agony. Smiles replaced the tears, a body sock or weighted blanket have replaced the growling and writhing on the floor. A trampoline has replaced cannonballs on the furniture-off the furniture-and even through the furniture. A sensory diet has changed Joseph’s life in ways I could only dream of in the beginning. Joseph gets to jump, spin, and squish his body into a state of calm regulation every day. Who knew a diet could be so much fun!

Posted in 30 SPD Stories in 30 Days, Fundraiser, Sensory Processing Disorder, SPD Foundation | Leave a comment

#27 The Mauro Family

Scenes from a Sensory Life

By Terri Mauro. the About.com guide to Parenting Special Needs and the author of The Everything Parenting Guide to Sensory Integration Disorder and 50 Ways to Support Your Child’s Special Education.

November, 1994. When we first meet our son, he is eighteen months old, and his world is limited to a playpen in a Russian orphanage. His chief mode of entertainment: swinging his head back and forth. The workers rarely let him out, and we soon see why. Released from those wooden walls, he zips on all fours, at the speed of light, from one corner of the playroom to the other. He loves to be picked up and removed from that pen, but as soon as he’s free, the last thing he wants is to be held. Only once does he consent to be cuddled, and the warm emotional moment is quickly followed by a warm wet sensation on my lap. Having relieved himself through the rags used as diapers at the orphanage, he is off and crawling again.

1995. Home now in the USA. With early-intervention help, the boy learns to walk — and then there are so many things to run full speed into and hit with one’s head and one’s face. Walls. Table edges. The feet of your sister as she plays on the backyard swings. Car rearview mirrors. Doors as you compulsively open and shut them. I live in fear of people noticing the cuts and bruises on his eyes and nose and chin and coming to horrible and completely understandable conclusions, for which I will have no explanation other than the accurate but totally lame “No, really, he just walks into things!” Confined to the relative safety of his crib, he rocks back and forth so violently he knocks a hole in the wall and slightly singes the back of his hair. His official diagnosis is Fetal Alcohol Effects, but the neurologist also mentions sensory integration, words I’ve heard from fellow adoptive parents on an e-mail list. I start reading up.

1996. The boy still is not so much with the being held. His school physical therapist suggests starting small: Instead of trying to hug the whole wriggly body, try holding his little foot. Casually, as we sit on the couch, reading a book, my hand creeps toward his toes. Touches the foot. Grabs the foot. Gives it a squeeze. No flight ensues. Little by little, slowly but surely, the holding tolerance grows. I become skillful at sitting him on my lap to watch TV and stealthily sneaking my arms around him. Barney the purple dinosaur becomes my ally in focusing attention away from the hated closeness of another. In small increments, the no-hug boy becomes my cuddlebug. I love him. He loves me. We’re a happy family.

1997. We get a chance to have the boy seen by a sensory-integration expert, Sharon Cermak, who is evaluating children adopted from Russia. She tries to interest him in doing specific things with toys. He prefers to examine the spot where a video camera is plugged into the wall. She tries to get him onto a platform swing. He doesn’t think that’s such a good idea. I mention that he’ll do pretty much anything if you let him play with keys, and she tosses my keys onto the platform swing. Up he goes. Good to know: Perseveration trumps sensory trepidation. We come away with a confirmation that sensory integration is a problem for him, some suggestions for his teachers and therapists, and a videotape of the session that still makes me smile.

2001. Orientation day for a pricey special-needs summer camp. We move from station to station, learning about the camp’s activities. At one station, a counselor brings out an enormous drum and encourages the kids to bang on it. My boy is in the zone, loving the feeling of hitting that bouncy loud surface. Another camper screams at the noise, his sensory sensitivities at red alert. The counselor tells my son to stop. His sensory-seeking compulsions fully activated, he does not. This is treated as a behavioral offense. Note to self: A camp that doesn’t offer full sympathy to both ends of the sensory spectrum is not a camp my boy is going to do well at. Note to camp: Do not pull out a big drum and then tell a child not to beat it.

School days. We are lucky. His special-education teachers and school OTs are interested in sensory integration, and we are able to keep his mixed bag of sensory-sensitive and sensory-seeking behaviors in context. We double up on therapy, seeing a private OT specifically for SI therapy. I find books on sensory issues and read and read and read. I find catalogs full of sensory tools and buy and buy and buy. We try brushing. Joint compression. Weighted vests. Weighted shoes. Weighted lap animals. Weighted blankets. Weighted wristbands. Body Sox. He has a rubber band around his desk to press his feet against. He wears big boots to keep him anchored to the ground. His teachers give him heavy things to carry. He is discouraged from pushing people and encouraged to walk on balance beams and crawl through scary tunnels. He can go to the park and swing forever, higher and higher, zoning out in the joy of flight, but he clutches the top of the slide in fear and refuses to go down. He is getting better. He is staying the same. He is exchanging one sensory weirdness for another. He is getting older. He is what he is.

2010. He is seventeen years old now. Tall. Sturdy. Hairy. And completely cured of sensory processing problems. Ha! No. Doesn’t work that way, not for us, not for him. The problems change, they lessen, they mutate. They don’t go away. They are a part of him. He does not, thank goodness, walk into things anymore. He no longer leads with his face. He does still chew on his shirts and suck his fingers. He does still jump in place to remind himself that gravity is in effect and the floor is down there. He still rocks himself to sleep some nights, not hard enough to damage the wall, just hard enough to make me wonder what the heck is that sound? He tolerates car alarms and thunder in a way he once could not, but he’s developed a fear of going down stairs. Hugs do not bother him, but his inability to modulate his own strength and squeezing mean that the hugs now hurt me. Tags and seams do not bother him now. Neither do bunched up socks in sneakers he has jammed on his feet, something that we wish he really would find uncomfortable. For years we bypassed his dislike of hair combing by giving him a buzz cut. This year, he wants to grow it longer again. We’ll see if combing is another sensory road marker he’s now able to pass.

I’d love to say that sensory-integration therapy worked miracles for this child. I’m a true believer in Sensory Integration Disorder (what it was called when he was diagnosed with it, and what I stubbornly persist in calling it as the terminology itself has mutated). I’ve written articles and blog posts galore, I’ve even written a book on the subject. I don’t want to give any ammunition to those who think all this sensory stuff is just another scam that desperate parents throw their money and hope at. All the therapy helped, in cutting the sharp edges off his sensory needs and pulling him in from the dangerous extremes. Age and maturity helped, too. But what helped the most was having a framework for understanding his behaviors, and permission to not take them personally. Just as understanding a child is blind or deaf gives you tools to help her cope and grow and thrive while not actually delivering a cure, understanding the role of all the senses and the way processing problems can affect all areas of functioning gives you the power to help your child and respect his strengths and special needs. Who wouldn’t want to know that? What strikes me most about my son’s growing up is the way in which the thoughtful and creative responses of clued-in adults made bad situations better. Awareness is vital. Spread the word.

Posted in 30 SPD Stories in 30 Days, Fundraiser, Sensory Processing Disorder, SPD Foundation | Leave a comment

#25 Sasha’s Family

Photo courtesy of Trina Gibbins Photography

The Same,
But Different

By Sasha, SPD mom and blogger at Sasha Says

When my son, “The Politician”, started kindergarten in the fall of 2009, I was so excited for him. I remembered how much I learned in school, taking in all the knowledge I could, and just *knew* he’d be the same, because we share an awful lot of traits, both physical and personality. We have the same wispy, thin, light-brown hair (although mine is highlighted- ahem- bleach blonde), the same light olive easily-tanned skin, the same sense of humor, and the same slightly shy personality.

But kindergarten didn’t turn out the same for him.

Not long into the school year, his teacher let me know that he was having trouble sitting still and keeping his hands to himself. In fact, he was so fidgety, he was actually falling out of his chair. Unable to sit still at “carpet time”, he was rolling onto his back, kicking his legs in the air, and just generally being disruptive. His teacher felt he seemed unable to control these behaviors and when my husband and I spoke to him about his behavior, he was truly sad about his conduct and would say “I just can’t help it!”.

You should know that I have a younger daughter, The Wild Child, who was diagnosed with Sensory Processing Disorder at age 2. Due to an ulcerated hemangioma she had as an infant, WC was in quite a bit of pain. At the time, we were unable to find anyone locally to help us figure out how to deal with her pain, so she was quite an upset baby who spent a lot of time raging.

Of course the hemangioma did eventually heal, but we were left with what we thought were behavior issues. She became a biter (others and even herself!) and was quite aggressive at 18 months of age- frequently hitting and kicking me to the point I often felt beaten up. At time she would seems to “space out” and become unreachable, as if she was unable to hear. Due to her violent behavior, there was a one-week suspension from daycare and many many many phone calls and meetings.

Right after her second birthday, I stumbled into a biting workshop at our local county health department and they mentioned quite a few children with biting problems were actually seeking sensory input due to a Sensory Processing Disorder. It was like someone turned on a switch and it all started to make sense. A Child Development Specialist that I spoke to after the workshop offered to do some evaluations on The Wild Child and it became apparent that she did in fact have SPD. She referred us to a wonderful OT who finally helped us reach and slowly get a handle on our beautiful girl through a listening therapy program.

Many, many books were recommended to me but one that hit home on our journey was The Out-of-Sync Child. I checked it out from our local library and flipped through it on my way out the door. After a few seconds of flipping, I felt my eyes fill up with tears and I moved towards the wall so I could lean against it for a second.

I found it! I found a paragraph that I should print out and give to everyone that knows WC. On page 193:

A mother wrote me this letter: “By the time Rob was two, I felt he had a special need, but I couldn’t figure out what it was. He required constant attention. Time-outs didn’t work because I couldn’t contain him. He was defiant, disobedient, disrespectful, and demanding. He was always busy, always talking (great verbal skills!), strong willed, contrary, and easily frustrated. I felt blessed to have Rob, and wouldn’t trade him for the world, of course, but he constantly tested and rejected me.”

And more on the next page.

“What was the reason for his behavior? How could I regain control? What method of discipline would get through to him? If his behavior was an attempt to get my attention, how could I supply it in a way that would satisfy him? How could I help a high-energy child channel his energy in a positive direction? I was desperate for answers.”

Desperate for answers… yeah, that’d be me! I devoured this book, seeking answers, information, hints and tips, things to make life easier.

Things began to get better. Armed with the information I had gathered, I most likely drove our OT crazy with questions! But she was wonderful and patient and the listening therapy program she put WC on slowly began to work its magic. It was an amazing thing to watch. How could 30 minutes of special music twice a day make such a big change? Even my husband, who thought the listening therapy was a bit “hippie”, was impressed.

Now, there were some hitches. The Wild Child wasn’t able to actually complete the program due to some pretty intense reactions to the advanced CDs, and because of this our OT suspects she may also have a Central Auditory Processing Disorder. But it’s been about 2.5 years since our diagnosis, and we’ve come a long way. We’re still doing maintenance listening therapy and seeing a behavior therapist that offices with our OT, but The Wild Child has become so much easier to be around- her teachers even describe her as delightful at times!

So you’d think that treatment for a second child with SPD would be a breeze, right? Not exactly! P and WC couldn’t be more different. Where WC’s issues had to do with regulation, and she just seemed “off”, P’s issues could be neatly fit into “seeking” and “avoiding” boxes. But that made it an even bigger mystery to me! How do you get to the middle?

On the avoiding front, unlike most kids, P was a strong aversion to temporary tattoos and stickers- don’t even suggest it! Clothes were always hard- tags that you and I might not notice were like needles on his skin, and there were so many materials he didn’t like. Showers and haircuts were a nightmare. And smells- he would throw up when he smelled fruit of all things- random, I know, but it was true, especially for oranges and bananas.

But then he started seeking- watching TV upside down, pushing his head around on the floor, touching everything, falling out of chairs because he couldn’t sit still. I was so confused.

Luckily, our OT was able to fit P in and do an evaluation on him, and sure enough, SPD was the culprit. The OT explained to me that for some kids who were oversensitive to some things, in his case touch and smell, were also under-responsive in other areas. What a puzzle! We were so fortunate to have a very understanding teacher willing to work with us on some modifications to help P succeed in school. A disc-o-sit in his chair helped provide him the input he needed to sit still, and putting him at the edge of the group during carpet time helped him keep his hand to himself. The teacher also allowed him to return to his seat during carpet if he felt he couldn’t control himself. Time away from the classroom, sometimes just in another classroom, sometimes helped him “reset” himself.

Luckily, the listening therapy program we completed this spring helped immensely. I am hopeful that his year in first grade goes well this year. So far, so good! His new teacher was willing to put the same modifications in place, and we used the Sensory Download from Hartley’s Three Boys to map out our plan for the year. I am thankful everyday for the internet and the resources it provided to me in finding solutions to helping my two kids with SPD, who are the same, but oh so different!

Posted in 30 SPD Stories in 30 Days, Fundraiser, Sensory Processing Disorder, SPD Foundation | Leave a comment

#20 The Masttromatteo Family

My Mislabeled Child

By Domenica Masttromatteo, SPD Mom and Blogger at Sensational Children

John has learning challenges. He is not lazy, picky, violent, destructive, irritable, inflexible, oppositional, and spoiled. John is a beautiful and brilliant 5 year old. He’s worked hard to get where he’s at (and no, I’m not just saying all of this because I’m his mother). Understand, most children flow effortlessly from one developmental stage to another, but for John growing up is a whole other story. As a newborn, John lost enough weight for me to justify (cringe) feeding him formula. My husband and I used syringes, drippers; anything to get him to drink his milk. What’s more, when we started bottle feeding, we had to squeeze the nipple for him. Eventually, or course, John learned to suck from the bottle, but he hated breastfeeding. He hated being held close to my breast. He cried and screamed frantically until I laid him down and left him alone. This calmed him, but I really wanted to hold my little boy, so I waited for night feedings where he’d dream-feed and lay contently in my arms.

It seemed as though things were on the way up, but as John approached his first birthday, we began to encounter new and more serious problems. He was not crawling or standing. He also had trouble with the pincher grasp and would still gag when eating solids. The doctors said there was something wrong and, although I visited a number of specialists, no one knew what to do. He’ll grow out of it…let’s reassess at a later date. Relatives said he was lazy and spoiled. His temper tantrums were getting worse. His speech was delayed.

I felt I was failing as a mother. I didn’t know what do. So I summoned up the courage to admit that my child was just different. What was wrong with that? We began to live our life around John. I was on egg shells all the time, afraid of John’s next tantrum. John was charming and wonderful, yet in the safety of our home he would quickly transform and become violent, even destructive. He grew increasingly irritable and inflexible and the days became too long and tiring because I tried to defuse every lingering outburst. What’s more, John becomes very fixed on an idea and can be quite oppositional. On outings, he was very impulsive and bolted out of sight in an instant; oblivious of the dangers. I became a recluse; outings felt impossible.

And then, one day, the caregiver at his daycare suggested we have Assisted Child Development come in to watch John. In other words, it had become official; John was just not developing like the other children. John wasn’t ‘growing out of it’. And that’s when I finally realised….John was unhappy. He was a sad and frustrated little boy. It was this realization that made me promise myself to find out why John was sad and frustrated.

At first, I was afraid of labels. I didn’t want him to find out my John was diseased or disordered, but then I thought of all the labels, the ‘mislabels’, I allowed others, including myself, to give John. We labeled him lazy, picky, violent, destructive, irritable, inflexible, oppositional, and spoiled. If I didn’t do anything, he would most likely live his life living up to these labels. He deserves so much more.

Finally, I found a pediatrician willing to take me seriously. We are on the right track. Because of the waiting lists in our health system, I looked into private options. But, you really have to know what the problem is to find the right person to give you the right diagnosis. Yes, it was all very frustrating. I did a lot of reading, found the right people and (while the health system is still trying to figure him out) I can confidently say that we are on the road to making John’s life a lot happier.

He was diagnosed with Sensory Processing Disorder (SPD) and developmental coordination disorder (DCD); which is part of the SPD spectrum.

SPD is what’s made, and is making, growing up harder than it has to be. John was unable to coordinate his muscles properly in order to nurse. He just couldn’t do it. His tactile defensiveness also made it uncomfortable for him to be held so close to me. His fine and gross-motor skills are delayed. He has difficulty orienting his limbs in order to get dressed. Regulatory disorder makes it difficult for him to regulate his emotions. So as we help him work through his learning disabilities with occupational therapy, speech therapy and Brain Gym, his confidence in himself is blossoming and along with it he is developing an extraordinary personality. A little boy that is hard-working, particular, tough, creative, sensitive, strong-minded, determined, and very much loved. It’s getting better, it’s getting better all the time!

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#19 The Turner Family

What’s Wrong With my Kids?

By SPD mom Beth Turner at Shoes, Socks, Seams and Strings

“Just make her wear it.”

I can’t even recall how many times I heard this from well meaning friends or family members in regards to my two daughters and clothing. Why couldn’t they understand that I had tried that, countless times, and the result was always the same: endless crying. Not just a little whine, and not an “I’m just trying to test the boundaries” cry; it was an “I’m in pain” cry. I’ve known my daughters’ cries since they were infants, and my ears and instincts told me that they were hurting.

Comments from perfect strangers have always been fun as well.

“Where on earth is that child’s coat?”

“That little girl is still wearing her jammies, Mommy.”

“Uh-oh! Somebody forgot to put her shoes on this morning.”

For years I would just grin and bear it while really wanting to burst into tears. I had no idea why my oldest daughter was so ultra sensitive, not just to clothes but lights, loud noises, textures, surprise movement, slides and swings…the list went on and on. My husband and I simply did the best we could to accommodate her needs, but I know at times we both knew that something wasn’t quite right.

It took having our second daughter with similar but not exact issues for me to get a clue and get to the bottom of what was going on. She also had a horrible time with clothes, but unlike her sister she craved constant motion and loved everything too loud, too bright, and too fast. She had an insatiable need to squeeze and pinch people, touch things, and stay moving.

Even as I started to research and learn about Sensory Processing Disorder, I didn’t feel that help was within our reach. I asked for help at my older daughter’s public charter school but was told SPD was not a “stand alone diagnosis.” I talked to our pediatrician and was told that she would give me a referral but I would likely only be granted four visits with Occupational Therapy. She was correct.

My oldest was 10 years old at that point, and very resistant to therapy. We missed the window of opportunity for her as far as intervention was concerned. My youngest was only granted four visits as well, so I didn’t even bother to go back after the initial visit and diagnosis. If Occupational Therapy is going to work it has to be intensive, and we simply can’t afford to pay out-of-pocket.

I simply learn all that I can through books and the internet, and take comfort in getting to know other families who are dealing with this somewhat hidden yet so debilitating condition. Just like allergies and asthma, which my oldest daughter has in addition to her sensory issues, the prevalence of SPD is rising exponentially. I don’t know why, but I do know that all the children and their families who are facing it are going to need help.

My hope is that Sensory Processing Disorder will be added to the DSM-V so that things will be different for other families who are just starting out on this journey. Acknowledgment from the medical community that SPD is real and sometimes occurs on its own would allow people to get the help, intervention and therapy that they need.

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#18 Analise’s Family

The First Day of Kindergarten

By Jennifer mom, writer, musician and blogger at Sensory Storm

As I write this, my daughter is on the bus on her way to her first day of kindergarten. It’s a big day for any child, I suppose, and I expect many parents have this combined feeling of pride and dread as the day goes by. I expect many of us are staying deliberately close to our cell phones. Just in case. But I also suspect these emotions might have an extra tinge of urgency and immediacy in parents of children with Sensory Processing Disorder.

My daughter is a beautiful child. Bright, warm, and loving. Creative as all get-out—she can play on her own literally for hours, making up stories and plotting complex epic adventures where Barbie and Luke Skywalker and her stuffed wiener dog go on perilous quests to save one another from the Giant Doll Cradle of Doom. Her preschool paintings have a vibrancy and balance of color that draw the eye and make you look again, because you are sure there’s more in there than you see at first glance. Her fashion sense is like her paintings—she puts together these outfits that should be horrific, but…somehow they just work. She plays with her brother, she argues with her brother, and she loves her brother. She loves to pretend she is a princess; she loves to play in mud puddles and paint her arms brown with it. She befriends neighborhood puppies, caterpillars, and slugs. She is a happy, sweet, curious girl, and there is nothing about her I would change. (Except possibly the fondness for slugs.)

But then there is the other side. Those beautiful paintings? She spent a year in preschool doing almost nothing else, because painting was something she could do quietly in a corner away from the noise and chaos of the busy-always-moving classroom. She makes up those long stories alone in her room because she has trouble connecting with the other children in her universe. She becomes anxious and clingy whenever a new stimulating situation presents itself; if Mom isn’t there for her to cling to, the anxiety sometimes escalates into sheer panic. She goes through life with a general attitude of wariness, sure that around every corner something big and scary might jump out at her, something she can’t deal with or process. Being in a room with a constant buzz of sound either revs her up into hyperactivity or causes her to withdraw into herself. The sound of public toilets flushing throws her into a trembling terror.

When she someone asks her to stop an activity midstream and change to something else, she comes completely undone and cannot make the switch. She often needs questions repeated, or once she has heard them she takes just long enough to respond that many adults think she is ignoring them or refusing to answer. She desperately wants to please, to fit in, to do and behave and say the things she is expected to, but all too often she misses the target. And when she thinks people around her are disappointed in her for being afraid or missing out on some activity or another, she bursts into tears and wails in utter conviction that she is “the worst child in the world.”

My daughter has Sensory Processing Disorder. Last fall her preschool recommended that we take her for a private evaluation with a neuropsychologist, because of her inability to engage with the larger group and her tendency to regress into toddler-like behaviors and non-verbal grunting noises when upset or overwhelmed. We went through all the stages most parents do, I suppose—first we wondered what was wrong with the school that they were seeing all these problems we hadn’t seen at home. Then we wondered what we’d done wrong as parents to have caused this behavior, to have made this beautiful little girl so unpredictable and difficult to be with. Then we just wanted to shield and protect her from anything that would throw her off balance or precipitate another meltdown. We started to read, to study, to learn about her sensory uniqueness, trying to figure out what she would need and what would help her; since Sensory Processing Disorder is not in the DSM and consequently not on a lot of people’s radars, we have felt very alone and disoriented trying to navigate the world of the different therapies, IDEA laws, IEP’s, 504’s, sensory diets, and so forth to figure out what she is eligible for and what will help her.

Honestly, even after numerous meetings with different teachers, psychologists, Special educators, and so forth, we still can’t say we really know what she needs. We are feeling our way, seeing what works and what doesn’t work, and trying to understand our little girl not through the lens of what we expect of her, but rather of what she sees and hears and feels as she moves through the world. The summer went well, and she has grown a lot and become more comfortable with her surroundings and trying new things. We give her the time she needs to think through her answers to questions, we give her the time-awareness she needs to finish an activity and transition to the next, and when she goes in a different direction than we’d wish, rather than assuming defiance or manipulation we try to figure out what’s going on inside her that makes her loathe to choose what we’d originally asked. We even crossed the public toilet barrier—she is still afraid of them, but she is able to cope with the fear and choose to face it rather than run. (If this sounds silly to get so excited about, think about what it must be like to be five years old, in a large cavernous unfamiliar room, with an ear/brain mechanism that amplifies sounds way beyond the average person’s perception—you’d be scared of the things too!) She is developing some close friendships with neighborhood children. And when I ask her now if she knows what a smart girl she is, she answers, “Yes. Yes, I’m smart. And I’m a good listener.”

The next big hurdle: kindergarten. Thinking about it from the non-sensory perspective, it’s exciting but nothing particularly perilous: She gets on the bus with her brother, she gets off the bus at school and walks with the other children to her classroom. She spends the morning in the kindergarten class, and then has twenty minutes to eat lunch. A teacher from the child care center across the street comes to walk the dozen or so children from morning kindergarten to their afternoon activities at the center, where they play and learn and snack and rest and play again. A few hours later when school lets out, her brother comes over with some of the bigger kids; then a little while after that Mom comes to take her home. A full day, a busy day, but just a day, right?

But think of it from her perspective: After eating breakfast and getting dressed in her most favorite comfortable clothes in her familiar and low-key home, she walks to the bus stop…where this giant machine that blows out smelly smoke, is an incredibly bright eye-peeling shade of yellow, and worst of all is so noisy you can hear it from a block away, pulls up and opens its doors. Is it any wonder she wants to hide from it? Once on, it’s not so bad, and the bouncing as the vehicle drives is actually very soothing and steadying…but then it stops, at a place where dozens and dozens of children, most unknown to her, and she has to walk with them, surrounded by a distracting buzz of noise, down a long and brightly decorated hallway to her classroom…already so many new and overwhelming sights and sounds and sensations, and it’s only 8:20 in the morning. Now think about the rest of the day: The classroom. The gym. The 19 other children working in the same space. The social cues to learn. The lunchroom, trying to remember to eat while processing the perpetual motion all around and the rising buzz of voices. And most of all, the knowing that if things get scary or overwhelming, Mom and Dad aren’t there to run to and hold. How scary must this all be for her?

For that matter, how scary is it for Mom? Because now, as I write this, she is probably off that bus and in her classroom…she is on her own. We are lucky to live in a school district where we have a lot of support from a wonderful staff who will spend a lot of their time the first weeks of school in the kindergarten classrooms, observing the children to make sure they are making the adjustments they need to, and if not, to help get them what they need to succeed. After a few weeks of class we’ll develop a 504 plan for her, once we see how she adjusts to the new environment and where the pitfalls and stumbling blocks present themselves. I will do my best to let go of the tendrilly little weed of false hope twisting sneakily through my brain, the one saying maybe all her issues will just Go Away once she’s in a positive schooling environment, the right classroom, the right schedule, the right age…because it’s a familiar little thought that’s been around through numerous other transitional moments over the past year. My daughter is who she is, and who she is is a wonderful bright sweet child whose brain processes its sensory input differently from other children. She will learn to make her brain work for her, and she will learn to work in the way that’s best for her brain. And she will thrive.

And today, she got onto a school bus and started kindergarten.

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