Sensory Issues and the IEP: How To Meet Your Child’s Needs When Your School “Won’t Do For Sensory”

If you are the parent of a child with sensory issues, I can almost be certain that at some point you have been told by your child’s school that “they don’t do” anything for sensory needs. No matter how much your child may struggle in school, when it boils down to giving out services, almost all school districts will say that they do not provide services for a child’s sensory needs. This message can come in different forms..some will say that occupational therapy is for academic or fine motor skills only, others may suggest that your child’s issues are behavioral and suggest interventions along that route. In my case, our district went so far to say that it is “against the law” to give a child occupational therapy for sensory needs only. Whatever the case and however it may be presented to you, I am here to tell you that this message we receive from our schools is not entirely true. And in the years that I have been raising awareness for SPD and communicating with sensory parents, this lack of resources for sensory kids in school is the most common problem that other parents present to me. It is always my pleasure to help a sensory family in need. I have had a long road as a sensory parent and if what I have been through can help another child, I am always happy to do so. So, in the spirit of it being Annual Review season in schools, I thought it best to share what I know about where a child’s sensory needs fit into an IEP and how the law can protect your child from being denied services that can help them succeed in the classroom:

1) What to say when districts “won’t do” for sensory: When you go to your district for an evaluation or to meet in regards to the outcome of an evaluation and they say they “won’t” do for sensory, ask to see the legal regulation that backs this up. While most districts set up their own guideline for what they will and won’t do, it is New York State law that governs a child’s right for special education services and any district who denies a child must do so under the state guidelines. So, when denied anything from an evaluation or a service, ask to see the law that supports the district’s ability to deny. If there is no law (and in my case there was not), then you can pursue your child’s right to service further.

2) Part 200 regulations of IDEA: I refer to this 200 plus page document as my bible as it is the part of New York State Special Education Law that outlines the rights of a child with a disability. If you want services for your child, become familiar with the law.

3) Occupational Therapy Defined: Almost always, a district will tell you that occupational therapy is for fine motor skills so, if you’re child doesn’t have fine motor delays, it would seem you are out of luck. However, Part 200 regulations defines occupational therapy as ” the functional evaluation of the student and the planning and use of a program of purposeful activities to develop or maintain adaptive skills, designed to achieve maximal physical and mental functioning of the student in his or her daily life tasks.” Didn’t see anything that says this service is for fine motor skills only??? Me either..so let’s move on! If you are getting an occupational therapy evaluation through your district make sure it includes a sensory profile. If your child scores in the deficient range as defined by the law, your child can qualify for occupational therapy through the school. Basically, if your child exhibits problematic behaviors in the classroom that interfere with learning, and it can be documented that the basis for these behaviors is sensory, then your child is entitled to related services to target the function of those behaviors..and occupational therapy is the way to target that.

4) Data is Key: In any case where you are trying to get special education services, data is needed. And by data, I mean a lot of it. The law states that one single standard of measurement cannot be used as sole basis for services. So, while you may know that your child needs OT to help them in school, you have to prove it. You need data from teachers about these behaviors, where they are occurring and for how long. If possible, go for an outside occupational therapy evaluation. They can provide a much more thorough evaluation of a child’s sensory needs then a school based evaluation. And, by law, the school must consider any and all reports (both school based and otherwise) when making a decision about services. Also, if your child receives services and your district wants to take it away, data is key also. Look at your child’s progress report? Are they meeting their goals? If not, services may still be needed, regardless of what one standardized evaluation says. The more data to support your child’s needs to keep or qualify for services, the better chance you have at the service being granted.

5) Learning DOES NOT EQUAL Academics: One of the most common responses from schools to a parent seeking services is that the behaviors “do not interfere with learning.” They will tell you how smart your child is and that they are academically on grade level or beyond. However, they are the ones coming to you about this behavior, right!? That’s because the behaviors are interfering with learning because learning does not always mean how well you do on a test. Learning means a lot of things and eligibility for services cannot be based on academics alone. The law states that a child’s functional performance, social development, physical development and management needs all must be considered along with academics. Management needs have gotten lost in the world of special education in the last few years but the way your child manages themselves and any behaviors relating to their disability is a very important part of school success. And while a child’s academics may not be interrupted yet, they can be if the child doesn’t have the proper tools to manage him or herself. So, if your child is academically appropriate, do not think that it is an automatic disqualification. There are many factors that must be considered and make sure you are getting all of the pieces of the puzzle before you are told your child doesn’t qualify.

6) Just because your child is sensory doesn’t mean they will qualify for OT: Last, but not least, I want to stress the importance that sometimes a child will not qualify for service. Sure, they may have SPD and there may be certain behaviors that present in school as a result. But, sometimes, a child can succeed without formalized service. Getting a child occupational therapy in school is just one small part of a web of interventions that a sensory child needs to be successful. And just because a child may not get occupational therapy doesn’t mean that their teachers cannot provide sensory input throughout the day. In fact, I am hearing more recently of how teachers are providing more movement opportunities in the classroom because it is clear how movement benefits all children, not just the sensory ones. Teachers are incorporating multi sensory experiences in classrooms through science experiments, or by using music to enhance a lesson. Some teachers will do yoga positions during transition times. And even if a teacher doesn’t do these things as a whole group, there are simple sensory strategies a teacher can provide to a sensory child to help satisfy their need for input without making it a formal intervention. So, if you explore all your options and your child still won’t qualify for formal OT (and some won’t) work with your teacher on how you can meet your child’s needs in an informal way. Any good teacher will want to do what they can to help a child be successful.

Now, it is important to remember that just because I was able to use all this information for my child and get her services that you will automatically do the same if you follow my advice. That is not the intention of this piece. However, my point in writing this is to express the importance of knowing your child’s rights. Last year, had I taken the word of our district that giving my daughter occupational therapy in Kindergarten was “against the law” I would not have been able to get the proactive strategies we have on her IEP that have been key in her success this year. But, even though my daughter has formal IEP accommodations and occupational therapy services, I still see a lot that her teachers do for the whole class to provide sensory input for all the children. However, I still continue to see far too many children get disqualified for services that evaluations, data, and classroom performance dictate they most certainly need. Just last week I must have communicated with at least six parents, all in various stages of trying to get sensory strategies and services for their children in school. A few days ago I took part in an IEP meeting for a child whose mother has spent the last few years trying to get  a sensory evaluation for her son through her school district. Together, after reviewing his reports and in educating all parties involved as to this child’s rights under New York State Law, this long awaited evaluation was granted. I had never met this parent or child and in one of our conversations, mom asked me why I would be willing to do so much for someone I have never met. The answer was very simple…because I have been there. I have been that parent fighting for my child to be set up for success, for her extra needs to be acknowledged and dealt with in a proactive way. This year I got the luxury of watching my daughter succeed in school for the first time since she started nursery school three years ago. I couldn’t have gotten to this point without help from others and I have promised to pay it forward. So, to all you sensory parents out there, consider this my payment to you. I hope that you find your own path to your child’s success. If I have said it once, I have said it a million times..change for one, is change for all. Be the change you want to see for your child! I will be happy to help you along the way.

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99 Tokens: The Sequel

For those of you who have read prior posts, you may remember a story I wrote last year about my daughter having a meltdown at Chuck E. Cheese after telling me that she was finally ready to go there. However, she didn’t last more than ten minutes before having a full blown sensory meltdown that caused us to leave. It was one of the many “a-ha” moments I have had as a sensory parent..those moments that make me realize that this disorder she has will never go away. Foolishly, I led myself to believe that she was finally free of this sensory world that limits her from so much. I was in so much denial that I bought 100 tokens when we got there only to have her crumble after using only one. So, as a reminder of our daily struggle with SPD, I held on to those 99 tokens we had left. It has been a year and a half since that day at Chuck E. Cheese and I still have those 99 tokens. They used to be in my car but now they sit on a shelf in the kitchen. They are right near the coffee pot I reach for first thing every morning. They are one of the first things I see as I start each day and serve as that tangible reminder that grounds me to my reality that I live with a child with Sensory Processing Disorder.

A lot has happened since that day at Chuck E. Cheese and my daughter has grown and changed in many ways. She has started elementary school and found success. She has become more emotionally mature and is better able to communicate her feelings. She is learning her body’s responses to her environment and beginning to self soothe and seek sensory input in appropriate ways. I have also changed in many ways since then. I have become more educated about Sensory Processing Disorder. I have been better able to read ,y daughter’s sensory signals and proactively provide her with sensory input throughout her day to keep her more regulated. I have learned to let certain behaviors go because I realize the sensory need behind them..as long as she is being safe and appropriate. I have found my village of sensory parents that I can go to for comfort and support. All of these things have contributed to her sensory success and, with all this success, it could be very easy to think that her SPD has gone away. But then there are those tokens…I see them first thing every morning and, much like that first cup of coffee, they are a necessary start to my day. I have realized, that when things are going well and progress is made, it can be very easy to forget about my daughter’s SPD. So, putting those tokens in a place I go to first thing every morning is the reality check I need to make sure I don’t forget her needs.

However, two weeks ago something happened that gave those 99 tokens a different meaning. My daughter was invited to a party at Chuck E. Cheese. Her first instinct was not to go…Chuck E. Cheese is my daughter’s sensory Mount Everest. Yet, I convinced her to give it a try and she agreed. The whole ride she was silent. For the first ten minutes, she clutched my hand so tight her knuckles were white and her entire body shook as if she was freezing. It was enough to make me almost turn around and chalk this experience up to a loss. But I let her take the lead and as her friends arrived she became excited and played games..running around and laughing with friends. Halfway through the party. she ran to me and, almost in tears, insisted that we leave. Instead, I took her to a quieter spot away from the party and kept whispering, “You are fine, you can do this.” She would protest, I would reassure her, we would take deep breaths…over and over again. Her heart was pounding so fast and I had to fight the impulse to pick her up and take her away. But, I knew she could do this. And, more importantly, I knew how proud of herself she would be if she got through it. Slowly but surely she relaxed as I kept telling her to just hone in on whatever it was that was bothering her. When she said, “It’s too loud” I would tell her, “It’s just the games” And I would isolate one sound from the zillion that were screaming around us and identify that sound with a particular game. One by one she took ownership of these sounds that were competing with her brain for attention and, as she began to separate them and make sense of them, she began to relax. When I felt she was ready, I encouraged her to go back to the party but she said she couldn’t. So, again, I gave her a clear goal..I told her to go find a friend who was running around and just join in. She did, and after what seemed like an eternity, she continued to enjoy the party as if nothing had happened. We stayed the entire two hours. Never had I worked so hard…two long, exhausting hours that only the parent of a sensory child would understand. But she did it..she triumphed..she overcame. She finally climbed Mount Everest..and not only was she proud of herself but she realized it wasn’t so scary after all.

Since that day two weeks ago, I still look at those 99 tokens first thing every morning. And yes, they still remind me of my reality that I live with a child who has Sensory Processing Disorder. But then, they remind me of something else.They remind me that Sensory Processing Disorder does not define my daughter. It does not govern our lives the way it did years ago when we didn’t know how to help her. Sensory Processing Disorder is never going to go away but it can be managed. It takes work, it takes patience, and it takes training. You must prepare for everyday occurrences a bit more than the average person and you must think outside of the box on a regular basis. No person who ever climbed Mount Everest did it on a whim..they did research, made plans, and prepared for as many anticipated scenarios that could arise during their journey. That is how to successfully reach the top of any mountain you may face. Those 99 tokens remind me not of places we have to avoid or things we cannot participate in. They remind me of my daughter’s courage to face situations that she knows make her uncomfortable, of all the progress she has made in the last year, and of all the possibilities for success that await her in the future. I used to look at those 99 tokens and feel sad that my daughter had to struggle with something that made everyday life difficult for her. Now, I look at them and smile. Those tokens have become a permanent fixture in our house. They are never going anywhere and I wouldn’t have it any other way.

The Key to Sensory Success in the Classroom

When I first realized that my daughter had SPD I scrambled to educate myself every way possible. It was my goal to figure out how to approach this so I, as her mother, could meet her needs. It took some time but, over the course of the last five years, I feel pretty confident in my knowledge of my daughter and how SPD presents itself in her life. So, naturally I was taken aback when I would approach teachers with my input about her sensory needs only to be shot down. I was told every excuse in the book for her behavior but one..that it was sensory related. I became frustrated and tried to back up my knowledge with reports, evaluations and data. Still, the most popular response from teachers was that they “just don’t see it.” I became discouraged and figured that, as the professional, they knew best. Although, I am a special education teacher by profession, my credentials and background did not help my case. By the end of her last year of preschool (and the third school we had tried in three years) I got fed up. When her teachers and our district recommended declassifying my daughter and disqualifying her occupational therapy for Kindergarten, I put my foot down and I challenged them. For once, I was arguing that mother knows best. I was not quite sure I knew what I was doing but I could not set my daughter up to fail when school had already been such a discouraging place for her. So, I studied our state law, I consulted with every person I know who has ever had anything to do with special education, and even went so far as to call an advocacy center, an attorney, and the New York State Department of Education. I could not erase the mistakes I made in the past allowing teachers to discount my daughter’s needs but I could to my best to make sure these same mistakes weren’t repeated in Kindergarten. This was a long and exhausting task but, in the end, my daughter was set up with an IEP that detailed a proactive sensory plan in addition to her occupational therapy to be continued in school. Having this IEP gave us an insurance policy that, regardless of opinion, my daughter’s needs had to be met at school.

We started the school year as we always do, my daughter showing up to school with a big smile…a child who is eager to please her teachers and who will initiate friendships with all her classmates without exclusion. A child who is bright beyond belief, reading years above her grade level from the start. She is not a child you look at and believe there is a problem. The teachers were happy to report she was adjusting well and, due to what was required on her IEP, some minor sensory accommodations were incorporated into her daily routine to keep her at an optimal arousal level. We began a monthly parent consult with the OT where I could give my insight into some of my daughter’s more subtle sensory signs. They used my input to better recognize sensory signs in the classroom they may have otherwise overlooked. As issues arise throughout the year, such as overload do to assemblies or indoor recess, they contact me immediately and we discuss the best proactive plan we can for her in these different school environments. To date, my daughter has not had one single meltdown in Kindergarten..a year that, in and of itself, is stressful for all children as they transition from a half day of play-based preschool to an academically driven full day with little to no down time. This transition to Kindergarten was not only seamless  but she is performing far better now than she ever has in three years of preschool.

So what is different now than from school years past!? Well, to start, we have her IEP. It was written in such a way to set her up for success. I didn’t allow our school district to change or reduce her services to see if she could survive without them. But that is only the smallest part of this recipe for success. No matter what an IEP outlines, it is only as good as the people who carry it out and, in this case, my daughter has been blessed with a school team who understands what it means to have a sensory child in the classroom. Her teachers work collaboratively with the OT to provide as much sensory input for her throughout the day as they can. They are constantly asking her what she needs when they feel she is looking for something to satisfy a sensory craving. She has an OT who bridges the gap between school and home through our monthly mandated consultation. Anytime I have approached the OT with an area of concern in school, she immediately meets with the teachers to put a plan into action. This perfect collaboration of home and school is what has paved the way for my daughter’s sensory success in the classroom. For the first time in her school career, my daughter’s needs are being respected and taken into consideration in every aspect of the school day. The school team not only upholds their end of the IEP but they go above and beyond to make sure that she feels good about herself in every situation she faces while at school and this little bit of respect has brewed one confident little girl!

Somewhere along the way the relationship between parents and teachers has become strained. The parent-teacher dynamic has become less of a partnership and more of a competition over who knows best. Parents who try to offer input are often viewed as meddling and overreactive by teachers who feel that they should be trusted to do their job while parents feel teachers are dismissive of their input and get frustrated that any needs that extend beyond academics are often being ignored.  While I can make a case for both sides because I am both teacher and parent, this strained relationship causes tension and, in the end, it is the child that suffers. So much time is wasted between parents and teachers debating over who is right and whether a child’s struggles truly exist. But when the focus shifts from who is right and walls come down, a child succeeds. While teachers may be the educational experts it is the parent who is the expert on their particular child. So we should spend less time arguing over who knows best and just realize that parents and teachers BOTH know best and both areas of expertise are equally as important.

So I hope that our experience can serve as a cautionary tale for both parents and teachers. It may have taken a legal document to begin my child on the path to sensory success but that was just the start of what bound us all together much like a marriage license does for a couple. The piece of paper you get doesn’t govern the strength of your relationship but the effort, communication and teamwork on both sides does. When neither puts in effort or one feels they put in more than the other, the relationship suffers and goes nowhere.The same principles apply to the parent-teacher partnership. Both sides must work together towards the mutually exclusive goal of the child’s success. Both roles are equally as important but bring very different things to the relationship dynamic. So teachers, listen to parents because they want to work with you, not against you. And parents, understand that it may take some time but that your voice will be heard if you speak up openly and honestly. Approach each other with an open mind, free of judgement and devise a plan to use all your strength’s to create a successful relationship and, much like in a successful marriage, watch the children reap the rewards of your successful partnership!

More Than A Meltdown

There was a time, not so long ago, when my daughter’s signs of sensory overload could not be ignored. She would scream, kick, and bite. Her behaviors would come fast, seemingly out of nowhere. This was a difficult time for us as we couldn’t always avoid situations that overwhelmed her. Also, her responses to things were unpredictable, making it hard to be prepared. There were times we would go somewhere thinking she would be fine and she would totally lose it. We went through our life on high alert as we never knew what would set her off. We became diligent in educating ourselves in Sensory Processing Disorder while at the same time educating ourselves about our own child. We learned that SPD treatment was not “one size fits all” so it became just as important to learn what worked for her as it had become to just learn about SPD in general. However, just as we would reach a point where things would be under control, her needs would shift. In a moment’s time, things that our daughter once found calming could suddenly alarm her. Situations she could once tolerate would become unbearable. And, all the time and effort we put into a treatment plan would be thrown out the window and we would find ourselves starting from scratch. This was our cycle of living with a child with SPD. The only thing that remained constant in our lives was our daughter’s inconsistency.

One thing that remained constant in our lives were these meltdowns. No matter how her needs changed, the outcome of her over stimulation remained. She would reach a boiling point and eventually explode. We became dependent upon these meltdowns in a way because it was our signal that she had enough. It helped us pay closer attention to the behaviors that presented before the meltdown so we could begin to treat her over stimulation before she broke down. It gave us an idea of the triggers in her environment that set her off so we were able to better understand where her sensory deficiencies stemmed from. In retrospect this behavior was needed as it helped pave the way for meeting her sensory needs. All the information we were able to compile because of a meltdown is what helped us make progress with our daughter.

In the last year, our daughter’s progress has been astounding. A mix of maturity combined with proper sensory input and an awareness of her own needs has helped our daughter to reduce and almost eliminate her sensory meltdowns. However, with this absence of meltdowns comes the misconception that her SPD does not exist. For anyone who has known her for a long time it seems as though she has been cured or that her issues were something that she has simply “grown out of”. To people meeting her for the first time, it is thought that her condition never existed. However, what people are failing to see is that my daughter is overstimulated, it is just presenting itself very differently. And this proves that no matter how much awareness has been raised for SPD there are still so many misconceptions. Last year, my daughter’s teacher spent much of the year disagreeing with me about her SPD, saying she simply didn’t see it. However, she noted my daughter’s hyperactivity and impulsivity. She made mention of “heightened and exaggerated emotional responses” but whenever I would mention the SPD she would say that my daughter “isn’t melting down.” And it was clear to me that the biggest misconception was that Sensory Processing Disorder equals meltdowns. Ironically, when the need for my daughter’s OT services were in question, this same teacher was asked to fill out a Sensory Profile which asks specific questions about a child’s classroom behavior. After scoring it showed that the teacher’s responses rated my daughter as having a “typical performance”  in only two sensory categories. The rest of her responses fell into the “definite difference” and “probable difference” categories. So, what does this mean? It means that this teacher most certainly saw evidence of SPD inside the classroom, she just didn’t didn’t know that she did.

This year, I am being met with much of the same attitude towards my daughter’s SPD. It has been mentioned more than once that her overload does not present itself in school. However, it is reported that my daughter needs to move constantly, can be impulsive at times, and mouths objects. Last month, during a week of assemblies,I got a glowing report of how well she had handled herself. She participated in the assemblies and only asked for a break when another child needed one. However, by the middle of the week my daughter faked a stomach ache to get out of going to school. After some prying on my part she revealed that she was afraid there was going to be another assembly and she could not tolerate anymore. Yet,the teachers believe that any need for sensory input is attention seeking rather than true need. And while I cannot deny the fact that she has made tremendous gains and that her sensory deficiencies do not disrupt her life the way they used to, that is not to say they do not exist. Just yesterday she came home with a spot on her shirt that she had chewed on while at school. Last month she came home with her undershirt in her backpack because she took it off in the middle of class. This is sensory overload. No, it isn’t kicking, screaming, disruptive overload. But it is still overload nonetheless. And this overload, while minor in comparison to past behaviors, needs to be addressed. Just as sensory therapy is not “one size fits all” neither is sensory overload. And as I continue on this journey watching my daughter’s needs change, the new consistency for us has been the overall misconceptions of what SPD is, what overstimulation looks like and how it should be treated.

A few weeks ago I considered putting my writing on the back burner. With all of my daughter’s progress I felt as if there wasn’t much of a story to tell. However, I realize now that the more progress she makes, the greater the need to raise awareness on her behalf. No matter how her SPD presents itself, it continues to be judged as something it is not. When her responses were loud and hard to ignore, it was judged as bad behavior and poor parenting. As her responses become more subtle, they are simply overlooked. Meltdowns may have become a thing of the past, but my daughter’s Sensory Processing Disorder has not. And, neither has my role as her advocate, therapist and spokesperson. So, we continue on, educating ourselves, educating our daughter and trying to educate the people that encounter her. We can’t make people understand us, but we will do our best to try.

Turning the Tables: How We Empowered Our Child With Sensory Processing Disorder

When my daughter was 3, she came to me one day and asked, “What’s wrong with me? Why do I cry all the time?” I didn’t have an answer for her and it broke my heart to see that she was desperate for me to define things that were going on inside of her that she couldn’t understand. She had been in her first year of nursery school and couldn’t get through a two hour day without breaking into hysterics multiple times. Her teachers’ only method in dealing with this was to ignore her and that wasn’t effective because she wasn’t acting out to seek attention. She screamed at birthday parties when they sang “Happy Birthday” and hated to get dressed in the morning but couldn’t tell me why. She cried while watching cartoons anytime a character seemed mad or sad or hurt. So, finally, she turned to the number one person in her life she felt she could trust..her mother. And I was speechless because I knew she was acting this way because she had Sensory Processing Disorder and stunned to realize that she was aware of it. Yet, how do you explain that to a child so young? I couldn’t and instead sat there, saying nothing. In that moment, I had failed her. And that was the day I vowed that I would never fail her again. Immediately following this incident, I took her to a therapist who started working with my daughter on communicating her feelings. I found a sensory motor group for children her age and begun to address her sensory needs with the help of an occupational therapist, even though I really didn’t even know what that meant.I began a laundry list of evaluations to assess every possible area of her development. I left no stone unturned and, over time, with the help of many different professionals, I started to piece together the puzzle of why my daughter felt the way she did. I started to feel more confident about our situation but my daughter did not. I may have been gaining some insight into her difficulties but she was still in the dark and grappling with feelings that were bigger than her was taking its toll. And I still had no idea how to fix that.

Over the course of the following year, I continued on this path of sensory enlightenment for myself. It made parenting my daughter easier and it helped pave the way for getting her needs met in school. I thought I was doing the right thing but, still, my daughter seemed so sad. And then something happened at school. My daughter had a meltdown because she wanted to sit in a certain chair for snack time and the teachers wouldn’t allow it. So, she broke down in front of her peers, while they all stared at her and covered their ears.The teacher had no problem telling me about this incident as she felt it was her duty to teach my child that she could not always get what she wanted. The teacher went on to say that this meltdown ruined the rest of the school day as the interruption delayed snack and everything else in the schedule that followed. I was devastated and I was angry…at her teachers for judging my daughter and refusing to notice her cries for help but more angry at myself because I did not know how to protect her from this. I had this smart, funny little girl who was sweet and compassionate and friendly but she was starting to look worn and weathered. Her eyes would always be red from crying, she walked with her head down and she started to become anxious. Any little thing she deemed “wrong” she would nervously apologize for. She was drowning in her issues and I felt helpless to save her.

Then one day my daughter, who was now 4, said the most amazing thing. She was bouncing around the house, extremely hyper and I was trying to get her to stop. She turned to me and said, “I can’t help myself, mom, because my brain feels tricky and my heart beats really fast.” I was amazed at this moment when I realized that my daughter was explaining her feelings of overstimulation to me in her own words. All this time, my daughter knew full well that something different was going on inside of her and because of the way others (including myself) treated her or talked about her, she thought that these differences were a bad thing. All the cries for help to me and her teachers and no one could give her an explanation, comfort her, or help her get what she needed. All the times the teachers or I spoke about her behavior in front of her like she wasn’t even in the room she knew exactly what we were talking about. She wasn’t feeling bad about herself because she had Sensory Processing Disorder. She was feeling bad about herself because WE made her feel bad about having Sensory Processing Disorder. After all this time I had finally figured out what was bothering her and I knew how I was going to fix it.I had to acknowledge and explain her Sensory Processing Disorder to the one person who needed it the most..my daughter. Did I look at my 4 year old and say, “You have SPD!” Of course not. But what I told her, in a nutshell, was this:

1) YES..your brain feels tricky…but everyone’s brains feel tricky about something. Each person has things that their brains find easy to do and things that their brains find “tricky.” For mommy..I am bad at math, I hate roller coasters and scary movies. They make my head feel funny and my heart beat fast. For you…your brain finds it hard to listen to loud noises, or wear scratchy clothes. And that is OK..because those things aren’t bad..they just have to be worked on. And I am here to help you.

2) YES..you have a lot of feelings but that is not a bad thing. You must work on controlling your feelings but having a lot of feelings is what makes you so kind and caring towards other people. Having a lot of feelings is called being sensitive and that just means you have a big heart.

3) She asked me one day what therapy was because she heard the word so often both at school and at home. I told her therapy is a place to practice things..some kids get speech therapy to practice how to speak. You go to OT to practice writing and calming your body down. You go to play therapy to practice your feelings.

When I told her these things, a wave of relief washed over her and it was the start of a brand new chapter for us. A new chapter for my daughter who finally found some concrete answers to the questions she had about herself. A new chapter for her parents who stopped hiding her difficulties as if they were something to be ashamed of. How could she be proud of who she was if we felt the need to hide it from her? From that point on, we have spent a lot of time talking about her issues in a kid friendly way and have since been able to build on this foundation of awareness she has about her own SPD so she can lead a happy and fulfilled life. In the last year, we have started to teach her to recognize the signs of sensory overload in herself and she has begun to find ways to give herself the appropriate input she needs to calm herself down. She has been better able to use the behavioral tools she has been taught to express her overwhelming emotions in an appropriate way. And, just recently, we have been able to show her that her initial reaction to sensory overstimulation is very quick and very strong and makes her want to run away.  However, when she sticks it out and calms herself down, she is able to overcome. And she is starting to overcome lately, more than she ever has. She may cry and scream and run at the first signs of sensory overload but she has been able to get past it more times than not and the feelings of pride she has for herself are overwhelming. At the suggestion of a friend, I have begun to compile a book of her sensory accomplishments to give her a concrete reminder of all the times she has overcome and to give her the courage to continue to try situations she has avoided in the past. Since giving my daughter this power over her SPD, she walks a little taller and laughs a lot more. She is silly and funny, not sad and anxious. Lately, I hear her say things like “I am brave!” and she couldn’t be more right. She is, in fact, the bravest person I have ever met. She pushes herself out of her comfort zone more at the age of 5 then I ever have in my entire adult life. Her SPD came with an awareness that is far more mature than her five years. And for the longest time that awareness, without any explanation, made her feel like something was wrong with her until we realized how to turn things around and use that awareness to empower her. It may have taken awhile to get here but it was well worth the wait.

Kindergarten…A New Beginning

For any parent, the start of Kindergarten brings a flood of mixed emotions. It is the moment where you realize that after five years of micromanaging every aspect of your child’s life, you must let go of the reins and entrust their well being to the hands of their teachers, who will be spending more time with your child then you will. You must come to terms with the fact that your days of play dates, surprise lunch trips and afternoon snuggle time is over. In that one second that they walk out the door on their very first day, the dynamic of your relationship permanently changes. This is probably one of the first of many difficult realizations we face as a parent…this moment when we send our child off into the world. Ask any parent how they felt that day they sent their child to Kindergarten and I am sure they will tell you it was one of the toughest days of their lives. Last week was my moment and yes, it was indeed one of the most difficult things I have done. 

As the parent of a child with Sensory Processing Disorder, this transition to Kindergarten comes with an extra set of emotions. Those of you who have followed our journey know that my daughter’s introduction to school was a difficult one…from that first time a teacher labeled her as a “typical, spoiled only child” at the age of 2 1/2, my daughter spent three years being misunderstood. Regardless of how many different schools we tried (there were three in total) , no teacher could ever quite understand my daughter’s needs. With each new school experience, more data was provided to show evidence of the root of all my daughter’s issues…a profound inefficiency to process information through her senses. And regardless of how many separate evaluations showed similar outcomes, no one quite knew what to do with her. So, naturally the thought of starting elementary school was something I started worrying about years ago. I was determined to have my daughter’s needs recognized and to have proper support and interventions put into place for Kindergarten to ensure her success. Every decision I made in regards to my daughter was in preparation for Kindergarten. And finally, after three years of pleading my daughter’s case, I used the educational system to the extent of which my child is entitled by the law. When I didn’t like the answers I received, I agreed to disagree and I asked for a reevaluation. In the past I was not confident enough to challenge a teacher when I didn’t like the feedback I was given. I was too afraid of looking like one of those “crazy parents.” And my daughter was the one who suffered because I was too afraid to speak up. So, by the final days of preschool, I spoke up. And someone FINALLY listened. The proof had been there all along. All it took was for someone to actually look at it. 

The intention of this post was not to rehash the days of preschool gone bad. It was all a part of the journey with lessons learned along the way. That chapter of our lives is over and a new one has begun. And, this chapter, begins a story of hope. This chapter tells the story of how a child with Sensory Processing Disorder can be set up for success in school. She has accommodations tailored to meet her needs such as access to a quiet work space, breaks as needed and a sensory diet to be implemented in the classroom on a daily basis. This chapter includes a monthly consult to review her accommodations and make changes as necessary to meet her ever changing needs. This chapter contains custom written IEP goals designed to reduce and/or eliminate sensory overload. Most importantly, this chapter is illustrated with pictures of a determined child who got on the school bus the very first day without ever looking back and who comes home each day with a smile on her face, excited to tell me about a new school experience. And while our story is far from over and may include difficult moments along the way, it is teaching people a lesson..and the more lessons learned, the better things become for a child like mine.

So, after all this preparation, the time finally came last week to hand the reins over to my daughter’s teachers as they, not I, will be the ones to guide her down the path of this next journey. And while I may not be the one to be fully in charge of where this journey takes her, I am not nearly as nervous as I thought I would be. This time, the journey begins differently because my daughter isn’t being led blindly…this journey comes with directions from the start instead of having to stop midway to find out where to go. And if ever they come to a roadblock, I am ready and waiting to provide them with an alternate route of how to get to the desired destination..the destination of a happy and successful child!

 

**To all my first time Kindergarten moms whose children are starting a journey of their own..a word of advice from a wise friend who told me that when the time comes to let go and send them on their way, just sit back, relax and know you did everything you could to get them where they need to be! Pat yourself on the back for a job well done and watch the amazing individuals your children are growing into! 

Making SENSE of Summer

I love all things summer. As a kid, I looked forward to our trips down the Jersey Shore where we spent our days on the beach and our nights on the boardwalk. As an adult I envisioned making summer memories with my own children. Then, five years ago, I gave birth to a sensory child. Sand, water, heat, fireworks, amusement park vacations, outdoor carnivals…of all the things my daughter cannot tolerate these things that most families look forward to during summer are the ones she hates the most. Our last family vacation was two years ago where my daughter wanted to do nothing more than sit in the hotel room and eat snacks. We spent more time preparing for summer activities than engaging in them so, two years ago, I put a stop to summer. No beach trips, vacations, very little outdoor activity. The stress of these things on my daughter was so strong it trickled down and effected us all. My husband and I would fight, she would melt down. It wasn’t worth it to me anymore. Teaching her to overcome and tolerate what she can’t has always been my goal but it became too difficult for me during summer. My favorite season became the one time of year I dreaded. So, summer ceased to exist in my house. We limited ourselves to the handful of tolerable activities that my daughter would participate in and didn’t bother to discuss the possibilities of a family trip or a day at the beach. 

This past year was a victory for us in terms of my daughter receiving proper treatment for her SPD. After years of battling our school district to recognize and meet her needs, we finally won. Our victory included IEP goals that related directly to giving her sensory input and occupational therapy that was to start over the summer to make up for the years she did not get what she needed. My husband and I continued to educate ourselves and had begun to understand what our daughter needed. In addition to the district approved OT, we enrolled her in a summer sensory group and have implemented many ways to incorporate sensory input into her daily life. So, with all these interventions in place, this summer began very differently. My daughter is more relaxed, both physically and mentally. She is far less hyper and not nearly as emotional. And, as summer unfolded this year, my daughter seemed more willing to try new things. Last month, we had our first trip to the beach in two years. She ran onto the sand screaming, “I love it here!” We stayed for four hours and I watched her happily participate in all beach related activities with her friends. We have spent many summer days at the pool with friends for hours on end. She will get out of the pool and eat her lunch in her wet bathing suit instead of pulling it off the second she gets out of the water. We attended an outdoor movie in the park and while her first instinct was to leave the second the movie started because the sound was too loud, she stopped herself and stayed the entire time. Since then she has asked to go back again, which is a huge accomplishment. She began practice for a fall cheer team, allowing her counselors to teach her to tumble and hold her up in the air over their heads. She has never tolerated anything like this before. For the first time in years, she is enjoying summer as any child should. And while she has her limitations, I am starting to see that they are not defining her as they have in the past.

This summer, however, has not been without its difficulties. There have still been plenty of times her SPD has prevented us from participating in overstimulating activities. We had to leave a birthday party because the noise in the arcade was too much for her to process. Her sound sensitivity led us to leave an indoor trampoline park and prohibited her from riding a carousel with her sister and me. Yet, even these instances have presented themselves much differently than they have in the past. First, her reactions were far less extreme. She never reached the point of melting down in any of these situations. She expressed a desire to leave and, even when visibly upset, she was able to hold herself together before reaching that boiling point. Also, in these situations she has had to wait to leave. At the carousel, she was forced to wait until her sister and I finished our ride. In the past we would have left immediately and, if we couldn’t, she would most certainly have melted down. With all this success and her ability to tolerate more things for longer periods of time I have seen a change in her. She is the happiest she has ever been. She walks around with her head held high, feeling confident and proud of herself. And, as a parent of a child with SPD, this is the point in our journey I have longed for. Gone are the days I have wished that we didn’t have to deal with this. Instead, I have realized that we CAN live with this and lead full and happy lives. 

When I think about what has made this summer so successful many things come to mind. My daughter is older, she is maturing. She can better verbalize her needs and understand what she needs to feel calm and comfortable. Her nervous system is maturing a bit as well making it easier to tolerate things she couldn’t before. As her mother, my attitude and efforts have changed. I no longer get so anxious in overstimulating situations when she expresses that she cannot tolerate something. I try my best to stay calm and implement what she needs instead of flying into my own “fight or flight” state. But most importantly, the biggest change has been that her sensory needs are finally being met for the first time in her life. We have therapists who are targeting her individual needs properly and they have been been able to teach us how to continue their work at home. In turn, we have been able to teach our daughter how to meet her needs as well. And this is what I have been working towards and fighting for the last few years..recognition, understanding and treatment for my daughter as an individual with SPD. Until now, the mere mention of my daughter having SPD has almost always been met with one universal response…”We don’t see it.” Anyone who did try to appease me would address her SPD in a general way, instead of looking at her individual needs. Anyone who was in a position to meet her needs simply had not. And as a result, my daughter paid the price.  But the attitude towards my daughter’s SPD has slowly been shifting and the impact of this change has been profound in the most positive way. It has started out with us having one successful summer and, if it continues, the possibilities for her to succeed are endless. For now, though, I will sit back, relax and enjoy this summer for the first time in a very long time.

What A Difference A Year Makes

Last year, I was at a breaking point. I had this child who had needs that nobody understood. She had been to two different schools with almost no success. She was explosive and sad and anxious…and she was only four years old. My husband and I had fully accepted she had extra needs when she was still an infant and we tried our best to accommodate her but she was getting older and spending more time in school and other places where others had to manage her. And nobody could. She cried, she screamed, she fell apart on a daily basis and she was starting to notice her behavior was different from others. She felt frustrated and alone..and so did I. While my husband has been a consistent partner from the start, our daughter’s struggles were starting to become the only thing we talked about. We spent most of our time and money on play therapy and parenting groups. Getting our school district to recognize and meet our daughter’s needs became a job that was taking precedence over my duties at home and to my children. One night, when this constant worry kept me from falling asleep, I started to write. And it felt good….really, really good. By the time I was done, I felt as though a weight had been lifted. In a matter of hours I had two essays and a list of many more experiences I needed to get off my chest. After reading other parents’ stories and sharing some of mine on a sensory blog site I got the idea to create my own space for my thoughts. And, at that moment, My Sensational Girl was born!

On July 11th of last year, I impulsively decided to share my first couple of essays on Facebook. I was so beaten down by the lack of recognition for my daughter’s issues and I felt that I had a duty to raise awareness for her sake. The response was overwhelming. The essay that got the most attention was one in which I tried to get people to discuss the everyday things in life that ignite a heightened response inside of them. For the first time, I felt like people had some sort of understanding of what was going on inside of my little girl on a daily basis and understanding was all I ever wanted for her. Almost immediately, I received several private messages from Facebook friends who were seeing the same in their children. Some of these friends fully understood what was going on in their children and some could see that their child was struggling and for the first time could put a name to their issues. Soon enough, I started getting messages from people who were referred to me because my blog was read by someone they knew.  All of the sudden, I had this small network of people who understood what I went through on a daily basis with my daughter..the accommodations I had to make, the judgement I received, the struggles to overcome normal things in everyday life that most people don’t think twice about. I was no longer alone..and neither were they.

Every month I would post a new story about my daughter and, each time, my new confidants would almost instantly private message me to discuss what was going on in their lives with their children. We became a source of support and comfort..venting our frustrations and sharing our resources. And, in one of these message exchanges, a fellow sensory mom gave me the idea to help link all these wonderful moms together. I created a private Facebook group and invited all these moms with similar children to join. Now all these great women who had become a constant source of support for me could now support one another. In six months, our group has grown to over 20 members. This may not seem like a lot but to all of us who had felt so alone only months earlier, this small community was more than we could have ever expected. Each one of these moms has told me how grateful they are for what I have done for them. What they will never realize though is how much they have done for me. I started sharing our stories to raise awareness for my daughter but subconsciously I believe I was reaching out for a lifeline I so desperately needed. These moms are my lifeline and my comfort zone, and most of them I have never met.

So much has changed in this last year since I decided to share our story. This year, I watched my daughter balance the highs and lows of Sensory Processing Disorder. I have seen her sensory related behaviors shift from melting down to verbalizing when she needs a break, or a jump, or a spin. I have learned that as she gets older her needs and her signs of overload are shifting and changing. I have celebrated her triumphs and have tried to instill in her that trying and being aware of your own limitations is a victory, not a failure. I have realized that I need to focus less on stopping certain behaviors and more on trying to replace them. I have shifted to a more proactive approach to her needs rather than a reactive one by giving her more sensory input throughout her day to prevent overload instead of rushing to pick up the pieces when she’s reached her breaking point. I have learned that there is more to SPD than meltdowns and that the best way to educate myself is to pay attention to my daughter because almost everything she does has a sensory related purpose. I have fought my school district to recognize my daughter’s needs to ensure her success in Kindergarten next year. And, lastly, I have learned that there is such a thing as making too many accommodations for my child’s extra needs and that the key to success when dealing with SPD is finding the balance between pushing her past her comfort zone and being respectful of what she cannot tolerate.

Going forward I hope to gain more insight into my daughter’s needs and to incorporate ways to meet those needs on a daily basis in as natural a way as possible. I hope I can inspire her to be comfortable and confident in her own skin. I hope that she will see in herself the bravery, resilience and determination that I see. I hope to have more patience with her and to better practice what I preach to other parents with similar children. I hope to continue to share our stories and find ways to reach a broader audience so awareness for these children can be raised. I hope to encounter more parents of children with SPD so our network of support and resources can grow. I want to thank all of you for taking the time to read our story. In the last year, many of you have reached out to cheer us on when we succeed or to lift us up when we were at our lowest. Some send me articles or information on SPD or share our stories with others. All of your efforts have been recognized and mean more to us than you could ever know. Your efforts mean awareness and awareness brings change. I never intended to change the world, I just intended to change my daughter’s world and there are far more children living in her world than I realized.  For the first time in a long time, I feel hopeful for what lies ahead. They say it takes a village to raise a child and, while it may have taken us awhile, we have found our village in all of you. 

Star of the Show

The moment I discovered I was going to have a daughter, I couldn’t wait to dress her in ballet slippers and a tutu and send her off to dance class. The moment she turned two I did just that. However, the experience wasn’t as blissful as I had imagined. Why? Because my daughter has Sensory Processing Disorder (something that, at this young age, I hadn’t fully discovered). She started dance and the first teacher she had noticed she wouldn’t participate and would physically prompt her to shuffle her feet and shake her hips. Eventually she would explode into hysterics and run around the room. I now realize that she wasn’t participating because she was unable to process the various stimuli coming at her such as the teacher giving directions over music playing while tap shoes pounded on the floor. The physical prompting alarmed her as she has tactile sensitivities and doesn’t respond well to being touched if she isn’t prepared for it. While I had asked the teacher to give my daughter some time to get comfortable, she found her to be taking too much time away from the other students so we decided to part ways. But my little girl loved to dance at home and I thought I would give it another try.  I found a Mommy and Me dance class and I thought that maybe having me there would make her more comfortable. The first day of class the teacher introduced tumbling and one somersault sent my daughter over the edge. The next couple of classes, despite telling her she didn’t have to tumble, she just screamed. I know now that part of my daughter’s SPD makes it difficult for her to process her feet leaving the floor but at the time I had no clue. I apologized to the teacher for my daughter’s behavior and she nicely suggested that maybe I should wait until she was a little older as she didn’t seem ready for dance class. Feeling embarrassed, I parted ways with dancing school number two and swore off dancing for my little girl.

A few months later, a friend of mine told me that she was signing her daughter up for a summer dance class. She knew all about our previous experiences but had only mentioned it to me as she heard great things about the teacher and thought she may be a good fit for my daughter. Reluctantly, I decided to give dance one last try. It was only a five week session so, if it didn’t work out, it was only a short commitment. We were met by a smiling and enthusiastic teacher. My daughter went in willingly and participated. However, as soon as she was dismissed she broke into hysterics in the lobby. When we got home I told her she didn’t have to go back but surprisingly she said she wanted to. So, we continued with dance. Each week she would meltdown as soon as class was over yet each week she would go back. I would peek in the dance room from time to time and see her participating happily. It was hard for me to understand why she would scream and cry immediately after something I watched her enjoy. And I realize now that this was the first time I had witnessed my daughter using all her strength and energy to combat her sensory processing difficulties. She had found something she enjoyed and a teacher who never questioned her behavior or forced her to do something she wasn’t comfortable doing. And, in that kind of supportive environment, she succeeded and she felt confident. The meltdowns after class were her release.

My daughter continued with dance that following year and she loved it. Yet, the entire year she melted down after class. As the recital grew nearer, I started to panic. Holding herself together for a 45 minute class was one thing but a recital was a whole different, overstimulating event. The music, the lights, the costumes…all things my daughter would have trouble with. During this time, I had found out that my daughter’s struggles were due to Sensory Processing Disorder and I was starting to research and educate myself. I shared my daughter’s issues with her teacher and she said she would continue to do anything she could to make my daughter feel comfortable. It was the first time my daughter wasn’t judged for her behavior. When recital day came, I sat through the show with a knot in my stomach. I had my daughter on my lap and I could feel her tension as she sat through it. When it was time to bring her backstage for her performance I kissed her, sent her off and held my breath. Suddenly she was on the stage and, while she seemed a bit unsure of herself, she got through it. She not only got through it but she danced…she overcame. By the time she took the stage for the finale she became a little more overwhelmed and, as I watched all the dancers waving to their families as the audience cheered, I noticed my little dancer trying to weave her way off stage with her arms out as if to say, “Come and get me, I’ve had enough.” But before she could go any further the show was over. Unsure of how she felt about the experience, I asked my daughter if she wanted to go back to dance and her answer was yes. So we signed her up again.

My daughter has been in dance ever since and, as each class passes, she grows more confident and more tolerable of all the stimuli that come with the territory. By the summer after her first recital, the meltdowns after class had stopped. During her second recital, she reacted to a spotlight on stage by covering her eyes, but as soon as that music came on she tapped her heart out with a giant smile. After the show, she collapsed in my husband’s arms and cried…releasing all the tension of being overstimulated and the exhaustion of reigning supreme over her sensory overload. And just as I had the year before, I asked her once again if she wanted to go back to dance. The answer was an excited, “Yes!” So she continued on.  Just yesterday she participated in her third recital. It was a tough day for her. We had worked through her refusal to wear her itchy costume by lining it with a cotton undershirt so it wouldn’t rub against her skin. Thankfully, it worked. At the show, she was again sitting with us in the audience and I could immediately see she was uncomfortable. What really put things into perspective was  that my 13 month old was completely unphased by the bright lights and loud sounds. The baby was actually enjoying the show, dancing in her seat and clapping her hands while her older sister was next to her, clearly suffering. And it’s moments like that when I am reminded of just how real my older daughter’s issues are. At one point she expressed that she needed a break. I was so proud of her for being able to verbalize what she needed as opposed to just falling apart.  Knowing more about what soothes her, I had come to the show ready with a pack of gum for her to chew and a bear for her to squeeze. But at that moment, even with all these provisions, she just needed to get away. When I found her in the lobby with my husband she said that she wanted to go home. She didn’t want to dance. We sat there for a moment until she decided she would go back into the theater and watch one more dance. So I took her in and, squeezing her bear and chewing her gum, she watched the one dance. I told her there were a few more dances left until she had to head backstage but I told her we could go back in the lobby and wait. Instead, she watched each dance, counting down in the program how many were left until it was her turn. When it was time for her to go, she walked cautiously out of the theater. The second she saw her friends from class, something about her changed. Her body relaxed and she smiled and ran off to meet them without giving me a chance to wish her luck or give her a kiss. And on that stage she shined! When I picked her up after the show this time, there were no tears. Just a huge smile and, as she jumped off the stage into my arms, she screamed, “I did it! I actually did it.”

It is moments like these that I find parenting a child with SPD the toughest. When is the right time to encourage your child to try something they cannot tolerate and when should you just walk away? On one hand I see that sometimes she needs a little push because the only way she will ever learn to tolerate these situations is through exposure. However, as a parent all you want to do is shelter your child from anything that harms them. And, in my daughter’s case, it is these everyday sensations that harm her. Sure, some of us may not like the loud music and bright lights we experience while watching a show. But we get through it and we enjoy it, no harm done. For her, the experience is completely different. It consumes her and, the more stimuli thrown at her, the more difficult it is for her to process. And although I know that she has to be exposed to these situations it still breaks my heart when I encourage her to try and she breaks down. But I am slowly starting to realize that each time I push a little she tolerates something a little longer and a little more appropriately. I also fail to remember all the times, like yesterday, when I push her and she succeeds. Those are the moments that build her confidence and those are the moments that make taking the risk worth it. I realize that SPD is a condition that will never go away and it is something that the world can’t make accommodations for. So, I have to start teaching her how to adjust to the world around her instead of trying to shield her from it.

Every year my daughter receives a medal at her recital to commemorate the end of another year of dance. For us, these medals symbolize her victory over her SPD. Every parent is proud when they see their child succeed. However, for us, there is always a sweeter reward than just watching our daughter be the star of the show for the day. For us, it is a celebration of her overcoming this obstacle that she faces everyday of her life. It is the joy of watching her find something she is so passionate about that she will risk putting herself in a situation she knows is extremely overwhelming to her. And it is the pride of seeing her push herself a little further than she has before and succeeding. Just the other day my daughter told me that she didn’t think she was very brave because she got scared of a lot of things. I told her that the bravest people are the ones who know what is hard for them but try it anyway, even if they know they might not succeed. She was quiet for a moment, and then replied, “So I guess I’m a little brave then.” She couldn’t be more wrong. To me, she is more than a little brave. She is the bravest person I know. And beneath that tutu and ballet slippers, it’s that bravery that I see when she’s up on that stage. And that, in my opinion, is what makes her a star!

Princess For A Day

Last month, while playing on the Ipad, my daughter came across an email I received that was advertising an “Ice Princess Party.” A local spa for girls was hosting this event that included an evening of makeup, dancing, pizza, and most importantly, a chance to spend two hours with Anna and Elsa from the movie “Frozen.” Immediately it was something my daughter knew she had to attend. After all, it was a chance to meet the “REAL ELSA!” This was too good to be true! However, given her track record with anything loud and overstimulating (and what could be more overstimulating than dozens of little girls shrieking to “Let It Go?!?!”) I was unsure about whether or not she would be able to handle this. But I decided to take her lead and get her the ticket.  I have never seen her so excited and I only hoped that the excitement she was feeling about attending the event would override how overstimulating the actual event might be.

For the next month, I couldn’t stop thinking about this Ice Princess Party. Some days I’d be positive and think that there was no way she wouldn’t absolutely enjoy it. Other days I was a nervous wreck thinking about all the other times in the past she has taken the initiative to try something new only to have the experience overcome her. And those times, when she has tried and didn’t succeed, are the most heartbreaking ones for me. The crushing look of disappointment on her face when she tells me she needs to leave somewhere…the way she’ll stand in the doorway someplace watching kids her age enjoy something she knows she should be enjoying….that, to me, is worse than watching her meltdown and completely fall apart. When she has a full blown sensory meltdown, it’s almost like an out of body experience for her. She is not present, she is not in the moment. She is just completely consumed by her overstimulation. By the time the meltdown ends, she is usually removed from the situation that triggered it so it’s hard for her to connect with what happened. So yes, she may remember that bowling caused her to completely fall apart and prevent her from wanting to do it again but, because of how she disconnects during the meltdown, she doesn’t feel a sense of disappointment in herself. However, when she has to consciously remove herself from something, I can see in her face that she feels like a failure. And no matter how many times I can tell her how brave she is or how proud of her I am for trying, she will always disagree. Knowing how important this princess event was for her, I couldn’t help but worry about how disappointed she would be in herself if it wasn’t everything she thought it would be.

 

 

 

So finally the big day arrived. We didn’t talk much about it and I didn’t hype it up. In the past I have tried to talk about how great things are going to be only to realize that doing so puts pressure on her to enjoy something she might not. So the day went on just as it normally would and, when the time came, she got her gown on and off we went. When we arrived there was not a single parking spot left so I had to leave the car running and usher her in quickly so she didn’t miss anything. I finally made it inside just as the music went on and the princesses came out. I held my breath, waiting for the usual but subtle signs of tension and distress. Instead what unfolded before me was pure magic! Out came Anna and Elsa and there was my little princess up on her heels waving to them excitedly. The next two hours were nothing short of perfection and I watched from a distance with tears in my eyes as my daughter enjoyed this party with her favorite princesses just as any little girl her age should. No stress, no worry..only joy! Throughout the night she’d give me a wave or run over to me screaming, “I can’t believe Elsa just did my make up!” She walked the runway, sat on a throne and smiled the biggest smile I have ever seen while she had her picture taken. She danced, she waited on line patiently to get her hair braided to match Elsa. Not a pout, not a protest and not a tear. When it came time for the sing a long, she sang with all her heart and soul. And it was in that moment, as I saw her clutching her microphone and singing “Let It Go” with everything she had in her, that I realized that her positive experiences overwhelm her with the same intensity that the negative experiences do. Being oversensitive doesn’t define her life by preventing her from participating in things we might expect that she should. It does limit her to enjoying fewer things than other kids her age but it makes those few things she does enjoy so much more special. So for every movie we don’t get to see or party we decline there is an experience like last night that leaves a lasting and positive impression on her. Ten years from now she won’t remember that she never went to a party at Chuck E. Cheese or a concert but I can almost guarantee that being a princess for a day is going to be something that she never forgets!