The SPD Blogger Network

“The haircut” happens three times a year: around Easter, Christmas and one other time during the summer months.

The first time we did an at-home cut, he was terrified of the clippers. It was just like the one at the barbershop, but our guy, Lou, retired. Lou and I would hold J down in the kid seat. J used his little legs and all the power he had to kick and kick and… scream. Hot tears ran down his face. We’d give him toys before the haircut he could play with, but it seemed to make no difference. After perspiring with a racing heart, it was over. I’d have his hair all over me and there would be marks on his wrists by me from the resistance and fighting to keep him in that seat.

This happened every single time we visited Lou. After awhile, we began to chuckle during the cut since we became pros at getting his haircut in 10 minutes flat.

At home, I covered up his body with a big sheet. When the hair would make its way down his neck or to any exposed skin, he would panic and try to brush it off. Combine that with wet tears and it spelled disaster. I was so desperate to get the hair cut. He’s trying to grab the clippers out of my hand and yelling at it like it’s “a monster– “Get away”– while I’m cutting the hair. It’s finally over and he’s overwhelmed. I am crying now because I think we’re never going to ever have a “normal” haircut where there are no tears and no screams and no kicking. …continue reading

Happy Passover Everyone!

Passover is one of the most important Jewish holidays and one that can cause the most stress for families living with sensory processing disorder. Typically, there’s a long meal (the Seder) at a table filled with family and friends and lots of unfamiliar foods and smells. It can be a totally overwhelming experience for a child with sensory sensitivities.

I know. We’ve been through several Seders where my son has spent the whole time in another room. Gagging on matzoh crackers.

This year, I’m going to try to get things right.

For those of you who don’t know what Passover is, it’s the holiday that celebrates the Jewish people’s freedom from slavery in Egypt. During the Seder, this story of freedom is told, starting with Pharaoh’s refusal to free the Jewish slaves and ending with Moses leading the Jewish people to freedom. Passover is one of the few holidays that is celebrated in the home rather than in a temple. Family, friends and strangers are welcomed to the Seder dinner as a tribute to the idea that we are all one family. No one is turned away on this day. And because Passover is such a community based holiday, children play an integral role in the Passover ceremony. At every Seder, children are asked to read “The Four Questions” of Passover to help them understand the traditions and story behind the holiday.

That section of the Seder starts with “Why is this night different from all other nights?”

In thinking about our Seder this year, it brought me right to that question. How can I help make this night – this Passover Seder – different from all other nights for my child?

My child with sensory processing disorder is different from many other children. But he doesn’t look different. I needed some way to convey to our Seder hosts that although my son may look like all the other kids, the Passover dinner will be very hard for him.

I decided to create this guide for our hosts, not only to give them the heads up about my son’s sensory sensitivities before the dinner, but also to help them get a better understanding of SPD in general. Using the eight senses, here’s my guide to a happy Passover Seder for my child:

Sight: There’s a chance that my son could get overwhelmed immediately upon walking into the room. If there are already many people there, it could set him off before the dinner even starts. I am going to ask our hosts if we can arrive early to the Seder so we can “check out the place” before the crowd arrives. It will give my son a chance to walk around the table and find his place, but also give us a moment to look for a quiet spot for him to retreat to during the meal. As people arrive, he’ll be able to greet them one by one instead of in a huge group all at once.

Sound: The more people at the Seder, the louder it will be. There’s singing and chanting in Hebrew - a language that he’s never heard before. I need to warn my hosts that there’s a chance this will be too much for our son, and to not get offended if he needs to leave the table at this point. I will bring his giant yellow headphones to help with the noise level, but we also don’t want to disturb the other Seder participants. I need our hosts to understand that it’s nothing personal against their singing, but more that it’s too much for his senses all at once.

Taste and Smell: I’m combining these two together because they go hand in hand. The smells in the Passover kitchen will come from the meal served at the Seder. These foods are very different from the five foods that my son eats on a regular basis. In addition to his small selection of food preferences, he also has an intolerance to corn products that has us watching his diet very closely. I will inform our hosts of this before the Seder night, and again remind them that his refusal to eat the matzoh ball soup, or the kugel, or the gefilte fish is not him being rude, but rather as a result of his extreme sensitivities to different and unfamiliar tastes and smells.

However, I will take the time before the Seder to introduce some of the food to my son. That’s my job as his parent. We’ll try some matzoh ahead of time. I’ll let him touch some parsley and we’ll boil some eggs. I’ll show him the picture of the Seder plate so he knows what foods will be on the table.

Touch: Like taste and smell, touching the new foods will be difficult for my son. There’s quite a bit of the Seder that involves handling our food – from dipping our fingers in wine to represent the 10 plagues, to eating matzoh crackers with haroset, to dipping the bitter herbs into salt water. Getting our hands “dirty” while eating is a new activity for my son, and while we’ve come a long way, he’s still not totally comfortable with it. So I will explain to our hosts that there may be some parts of the ceremony that we’ll need to skip. Or we’ll be up washing our hands several times during the dinner.

Interoception: This sense - the one that is responsible for telling our bodies if we’re hungry or have to use the bathroom – this one will be the most obvious. This is the first Passover since my son has been toilet trained. He’s very clear – and loud – about when he has to go and what he has to do in there. I’ll make sure we’re sitting close to the bathroom for a quick escape. But while his body is finally understanding the “need to use the bathroom” part of this sense, he’s still figuring out the “feeling full” aspect of it. There are some meals that he’ll eat and eat and eat and never say he’s full. Most nights, however, he barely eats anything and never says a word about being hungry. It’s all triggered by how his body is feeling at that moment. Again, I’ll make sure our hosts know that if he says he’s full before any food comes to the table but then asks for goldfish crackers 10 minutes later, it’s not that he’s being rude. It’s just that his body can’t tell him yet when he needs to eat and when he’s done.

Vestibular/Proprioception: I’m combining these two senses for my host because they have to do with how my son is feeling inside, and they are probably the two hardest senses for someone without sensory processing disorder to understand. The vestibular sense has to do with our bodies’ sense of place and how we relate to the space around us. The proprioceptive sense is about our joints and muscles and how our bodies feel. A Passover Seder can be very long. There are a lot of stories and activities and different meal courses throughout the night. I know my son won’t be able to sit for that long. I know he’ll be asking me for “squishy hugs”. And if he’s feeling out of sorts, I know he’ll fidget in his chair or get up and start running laps or spinning.

I have to warn our hosts of this ahead of time. I have to tell them that he’s not being disrespectful, but rather this is the only way he can make his body feel “right”. We may need to leave the Seder.

I’m hoping that by planning ahead we’ll be able to stay as long as possible. I’ll bring his squishy exercise ball for him to hold. I’ll bring his weighted blanket for his lap (until we eat). I’ll give him squeezes throughout the evening to help him. I’ll leave the table with him when he needs space to pull himself together. We’ll bring all of our tools to help make this Seder successful.

The last thing that I’ll tell our hosts is to remember the heart of the Passover story. Passover is about being free and about welcoming everyone and anyone into our homes to celebrate those freedoms. Try as he might, my son cannot get free from the sensory sensitivities that can make these special holidays so difficult. In the true spirit of freedom, I need him to feel welcome at the Passover table, no matter what how different he may be.

And that would truly make this night different from every other night.