The Fort! What child does not like to take blankets, pillows, and in Nora’s case a beach umbrella and make a fort. Using chairs to drape the blankets over, stacking books on the edge of a dresser over a corner of blanket to hold one end up. Household items soon become a cacoon of comfort for children of all ages.
Nora became a master fort builder by the age of 5. She could whip together a fort in any room in our house like it was nobodys business. We knew, even before diagnoses, that she needed this space to be alone. Though honestly with 3 small kids in the house somedays I crawled in there with her! When she was four years old we got a golden retriever puppy. She and buddy would spend a lot of time in his crate together and more often than not she would be in there alone and Buddy laying in front of it. She loved it!!
The forts were not always a good thing and as Nora started full time school I noticed a change in her behaviour. She would spend all her time in a fort and if I took the fort down she would have a huge meltdown. At times she would refuse to come out and eat or let anyone in with her. After her diagnoses we learned that it was a coping stratagy to help her self-regulate. At the time she shared a bunk bed with her sister so we put a blanket across the bottom bunk and turned it into a sensory place for her with twinkle lights, a small basket of books, and some stuffed friends. Our OT helped us create guidelines so Nora understood that she had to come out to eat but also knew she didn’t have to share her space. All of these changes helped and fort building went back to being a fun activity she could do in the family room with her sisters because when she needed it she had her own sensory space.
As time went on we learned to watch how much time she needed to spend in her sensory space. At certian times of the year that need increased like at during the Christmas season or the last month of school. It helped us to know what we could do to help Nora during these overstimulating times in her life. We could make changes to her school program or schedual to help her get the most out of the time she was there. We knew not to try and take her to the mall during the month of December. More outside time and less inside time becasue nature is the best way to help kids with SPD. Even today if Nora sets up a fort I know it is a signal that something is up. Only now she can articulate what is on the go.
This week is the last week of school and she can tell us she is overwhelmed. That the energy level and noise level are too high for her. For some students they love this time of year when fun activities are going on but for Nora it throws her off. So we talk to her learning support teacher and find out what she has to be their for. Then we pull her out for the things that are optional. Over the years I have had educators who are so supportive and others who question my decision to let her miss school. Although their input is well meaning it often comes from a place of misunderstanding. Is life always easy, no absolutly not. Should Nora learn to handle this very overstimulating world because it is not going to change? Yes, to a degree she needs to learn to handle and survive the world around her. However, I try to explain it this way. If Nora had only one arm would we make accomadations for her so that she could have meaningful participation in our community as a whole. Absolutely!! If I forced her to go to school at times when she was overstimulated, like during a sports day, she would come home ready to shut down and at times will take a day or two to bounce back. Leaving her walking through her days not really being able to make meaningful connections with those around her. So there are times we make accomadations for her so she can make meaningful connections and have good positive school experineces the rest of the time.
Life with SPD has not always been easy. There were many nights I went to bed in tears because I didn’t know how to help this kid. I could see her at times falling between the cracks and crying for help. The forts are just one example of a sign of disregulation. At times Nora would develope a tic or have huge melt downs. During these meltdowns she would actually vocalize that she didn’t understand why she was so upset. There were times Nora would appear confused and cling to us. As time went on we learned what to watch for and how to make changes in her sensory diet, school day, and routine to help her. Nora, herself, often showed us what changes needed to be made and we learned to follow her lead. When she was first diagnosed we lived beside my parents. Nora spent a lot of time with them and often when her older sisters would have friends over she would pack up her stuffies and walk over. It was just the two of them and they would provide her with a quiet place to play and do her thing.
I asked Nora once recently if she could explain why she doesn’t like class trips, award ceromonies, and parties. She smiled and said “That would be hard for you to understand because you love people.” She went on to explain that when she is at school, a party or a mall she feels someone is poking her with needles. It phycially hurts and then she gets confused. Sometimes she can block it out but then it leaves her exhausted. So she only wants to do it if she has to like regular school, family parties, or a special friend. Also anything outside is much easier she said because wide open makes everything better. I asked her if she feels like she is missing out or sad to miss things. In true Nora fashion her response was, “I know my friends love me whether I am there or not”.
So as the school year comes to an end and Nora’s world becomes a little more her speed she will take down the fort in her bedroom (which right now a Canada’s 150th Umbrella). We will enjoy lazy mornings, quiet moments, and me trying to talk her into a trip to museum (something she loves as long as here are not too many people). Nora is spending most of her summer at her grandparents farm in B.C. where the world slow, quiet and she can be outside all day. And when the new school year starts we will watch for forts!