Here is Part 2 of the Readers' Interview & Giveaway with Chynna Laird. This portion is loaded with great advice for back-to-school. For instructions on how to enter the giveaway, see the
intro to Part 1 here.
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5. Do you have suggestions for keeping track of, and meeting the needs of, more than one child with sensory issues? In my case, Dreamer is defensive to touch, light, little bit to noise. He wants to go live in a cold country! Speedy is a sensory seeker - cuddles, massage, compression, trampolines, crunchy spicy food, and Curly has mainly food related issues - only eats bland, soft food.
This is an incredibly timely question as I just found out that my son, Xander, also has SPD and other issues (our oldest daughter, Jaimie, has lived with SPD her entire 7 ½ years).
It can be confusing and overwhelming caring for more than one child with high sensory needs, but it sounds like you’ve already gotten in tuned with what sensory issues each of your kids lives with—good for you! In our house Jaimie and Xander are sensory polar opposites: Jaimie is mostly an avoider while Xander is mostly a seeker. You can imagine the chaos this causes because Xander may unintentionally throw Jaimie into sensory overdrive when he’s innocently trying to meet his own sensory needs by standing close, talking loud, touching, etc.
Really all I’ve done is kept a little file on each of my kids (Jaimie’s is a binder now!). The file includes:
a) A chart that lists each of your kids’ areas of concern, sensory-wise, including what works to help regulate or calm them. Each of them has distinct needs so each will have their own special tools, strategies and coping methods too. Then as they grow, you’ll find often their needs change too then you’ll have a record of what you’ve tried and you can switch things up.
b) A journal for each of my kids. It started out as something I created to chronicle all the amazing things they did from birth to adulthood. But it’s also become a way to keep track of how they’re doing at home during therapy rounds, their progress, how they got over hurdles, etc. I actually bring them out when they’re having a particularly rough day to show them, “See? This happened here and look at how you got through it!” It makes them feel better.
c) The last thing you may want to try including is a log of each of their triggers. I found that really helped us understand Jaimie a bit better in the earlier years before we knew what SPD was (or that that was the name for what Jaimie had). This helped me in two important ways: first, it mapped out where her true sensitivities were. For example, we knew that Jaimie was severely tactile defensive but were never quite sure what would set her off. Once we logged what ‘touchy’ things caused the worst tantrums, we were able to nip things in the bud and make sure we had the right tools ready. Second, once your child is in therapy and practicing her sensory diet, etc., logging triggers gives you a way to monitor what areas are being helped (or if they even are), shows whether another area is becoming more/less sensitive, and gives you a worksheet to let your therapist know what needs to be changed, worked on or improved.
I’ve also used these tools to explain my kids’ needs in school or when people come to visit. Above all else, we need to share with people what our kids do well, despite the hurdles they face most days. That’s so important because we want everyone to see these kids as being kids with something to give. So, always be sure to add in the good stuff too.
6. What types of interventions have you tried for your daughter over the years? What did you find to work best for her? Did the interventions remain consistent or did they change over time/as she grew?
When we finally got help, Jaimie was about 2 ½. At that time she’d gone without any sort of intervention and her body was extremely de-regulated. We had to start with at-home OT every week. The goal then was to get Jaimie used to social interaction with someone besides me—something she’d avoided her entire life (and still does most of the time). Unfortunately, that didn’t work out because she had a real problem being ‘treated’ in her safe place. The OT that worked with her got us into a local community program where Jaimie received weekly Play Therapy. THAT was a blessing for us.
It was perfect for a child like Jaimie whose sensory sensitivities were so severe that she wasn’t able to handle closeness or interaction of any kind. At that point she was what they called ‘selectively mute’, meaning that she could speak and understand language but she’d chosen not to speak because talking to others meant they had to talk to her. I guess in Jaimie’s mind, she didn’t know how a person would make her feel so she just avoided everyone but me who she felt safe with.
What Play Therapy did was helped Jaimie learn how to interact with us through play or toys. It was like a breakthrough for us. She still didn’t make eye contact much and still kept most people at an arm’s length but by the end of her sessions, she was willing to communicate, share ideas, follow instructions, etc. Once she got to that point, we felt she was finally ready for the more intensive SI-OT she’s doing now.
In between all of that, she also saw various psychologists, a psychiatrist, Listening Therapist, did iLS through her SPD OT, and we are now following Feingold and seeking the guidance of a nutritionist and naturopath. As a side note, there are other things that we did on our own that worked with Jaimie only we didn’t realize they had special names for it. For example, we got her a rocking horse that actually moved like a horse (Hippotherapy) and she wore that right out. Every time she was close to having a meltdown, we brought her into her room, put on the music she really liked (usually Wiggles or Beatles) and she rocked, rocked, rocked. I also do a form of Guided Imagery with her during times when she’s so anxious her regular sensory diet doesn’t work on it’s own. All I do then is get her to picture a beautiful place (she usually chooses water) and ‘see’ herself there. Then get her to tell me what she’s doing, how her body feels, etc.
For us, the biggest challenge has been getting Jaimie to connect with her body and learn to understand how things make her feel. Helping our kids understand how a person, object or event effects their body by describing what their bodies are doing during such times (eg: fast heart, fast breathing, prickly feelings, etc.) can help them understand what their bodies need in order to bring their bodies back down to a calmer state. SI focused OT is tremendously helpful in teaching these kids about their bodies and helping them feel safe in their own skin. The other methods simply fill in the gaps, offering additional support.
To answer the last part of your question, you’ll find that as your child grows, her needs will change. She may get over her sensitivities in one area only to seem to get worse in another. It may sound strange but this is actually a good thing. I was taught that when this happens, your child’s brain is making those neural connections to understand that particular sense, or part of that sense, and so her brain is saying, “Great! We’ve ‘got’ that now. But this one still needs more attention…let’s work on this more now.” I’ve found sticking to routine and a solid sensory diet to be the most helpful. You can tweak both of those things as your child grows and changes.
7. What advice would you give to parents who are trying to get the schools to understand their sensational children? Any tricks of the trade that have worked for you?
A very important question. I’ve actually been very fortunate in Jaimie’s situation as, with the exception of pre-preschool, we had teachers that not only wanted to learn about SPD but who were also more than willing to do everything possible to make the classrooms a ‘sensory safe’ place for Jaimie.
I understand that not all families have been as fortunate as we have, and have had to fight just to have the schools listen to their concerns. It infuriates me because it comes from lack of knowledge as well as an unwillingness to accept new information. A lot of this comes from the fact that SPD isn’t listed in the DSM as yet, which Dr. Lucy Miller and her research team are working so hard to achieve. This book, as many of you know, lists every disorder, disease and health concern including symptoms, diagnostic process, treatment and prognosis. Having SPD included in this book would mean that SPD will be recognized by the medical community as a ‘real’ disorder. The end result would be getting help for our kids in the community, as well as for school, will be much easier.
Until that day happens, however, we have to take on the challenge of getting our kids what they need ourselves. For some of us it’s not too difficult, for others it is excruciating. I believe in my heart of hearts that you just need to find that one person to be in your corner, to help make those heads turn to you and listen, to get the ball rolling. You just have to keep at it until you find that person.
For me it was Lori Fankhanel, Founder/President of SPD Canada. She and our OT, Kathy, gave me the right tools, words and information to go to Jaimie’s school and fight in a nice, calm, fair way. I’m a pretty mild-mannered, shy girl by nature but will get right in there if one of my kids’ needs are being ignored. I could say so much on this subject but, for now, I’ll just give you the main pointers I’ve found to help:
a) Give the right information first. Do not go in the principal’s office with all guns-a-blazing, making demands right off the bat. I had a lot of problems with our principal initially because he simply refused to take the time to listen to me. In my case I went to Jaimie’s potential Kindy teacher and explained everything to her first then she made the principal listen to both of us. Once he listened…really listened…to our story, things began to get better. That’s when I realized the true meaning of my grandmother’s expression, “You catch more flies with honey than you do with vinegar.” Give them the information they need to understand. Give them layman’s definition of SPD then tell them how SPD affects your child. Teach them about your child’s version of SPD and what he needs to concentrate, pay attention and learn. Because that’s what they want: facts and what they can do to help.
b) Bring in all the necessary documents. Bring in any documentation from therapists, OTs, etc. Unless your child’s form of SPD interferes with his learning, he may not have an IEP or similar plan because that is what is used to track the need for assistance. If your situation is such that your child doesn’t qualify or need an IEP, then work directly with the teacher. In Kindy, Jaimie had an IEP but she was ‘released’ at the end of the school year (they focused on her anxiety because that was ‘coded’ where as SPD wasn’t…yet) because she met all of her goals. The next year, I worked directly with her teacher who willingly accepted the “School Accommodation” lists from Jaimie’s OT as well as my own suggestions of what works in various scenarios. If need be, see if your OT or other therapist would be willing to come with you to meet with the teacher or other school officials. Sometimes having the parent’s insight mixed with the professional’s gets things going in the right direction.
c) Meet regularly with educators. We found that staying on top of things is critical. Oftentimes if the educators don’t hear from you they assume everything is tickety-boo and won’t think to ask. We had bi-weekly meetings with Jaimie’s teacher as well as monthly meetings with the principal and the other school officials. That way I could keep them abreast on Jaimie’s therapy, what’s working for her and what she needed as the school year progressed and they could tell me what Jaimie needed help with or was struggling with in the classroom or the rest of the school. The we brainstormed on ideas to help Jaimie.
d) Invite questions and conversations. People are more willing to accept something when they have all the tools they need to learn about it, including being able to ask questions. Think of how children are when presented with something new: they ask questions until you are sick of hearing them! I’d much rather have people ask me tons of questions than to stay quiet. We learn from each other by talking, communicating, and asking questions not by staying silent.
e) Offer to speak, or ask to put information up on the school info board. I’ve done this many times. I’ve offered to speak to the teachers or Aides and have put information about SPD on our school’s information board. Jaimie’s teacher even handed my books around to the other teachers! How awesome is that?
The point is there is really no specific trick of the trade that I’ve practiced. The one thing I’ve always done is gotten right in there and talked about it. “This is Jaimie and she is an awesome kid and a great student but she needs a bit of help. Why? Well, let me tell you about it…” Talking to other parents is a great way to spread information too because you never know when you are helping out another parent who is out there wondering. And I told myself that Jaimie is not the only child with SPD in her school and won’t be the last. If these teachers understand SPD, what to look for, have the tools to help these kids, have their classrooms ‘sensory safe’ for them for easier learning, they’ll be miles ahead for the future. I’ve even started on my school to create a small Sensory Room for these kids to be able to access during times of stress or when they need that sensory input. We’re even willing to put our own duplicate equipment in there! (Of course the main issue is having someone to monitor the room but I’d even be willing to do it if that’s what it took!)
I’m going to have four ‘sensational’ kids going through that school, if we live here long enough. I want the school to be ready for them and want my kids to know they’ll be in a safe place.
In the end, if you still get resistance from your school, be sure to contact your District Education Superintendent or contact your local SPD Foundation for more direction.
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Thank you Chynna for these thoughtful and thorough answers to my readers' questions. Readers, remember to enter the giveaway (
instructions here); winners will be notifed and announced on or shortly after August 18.
