Helping Our Sensational Kids in School Without the IEP

I have to say, it sure feels good to be sitting here at my computer. For over a week I haven't been able to because I've been sick with some sort of flu and just dead-dog tired. I'm still not feeling 100% but I feel better getting the brain juices flowing and thinking about something other than if I have enough Kleenexes to get me through the next little while and how sore my throat feels. And it was so weird because it just snuck up on me then hit me like a ton of bricks.

We went to IKEA on Rememberance Day---like many other Edmontonians---just to look for a few things for the kids. As we walked around the store, I remember telling Steve that I felt funny. "Maybe you should get more sleep at night," he said.

"Perhaps, you could get up with them once in awhile Mr. 'Oh-Sorry-I-Woulda-Got-Up-But-I-Didn't-Hear-A-Thing-From-The-Living-Room," I said, trying not to sound too bitter.

I just remember feeling tired, a bit dizzy and my legs ached. Thursday and Friday I felt even more tired but much more so. Then Saturday I woke up with a stuffy nose and my whole body ached. By dinner time, I had chills so bad that I was wearing three layers of clothes and STILL cold! Then on Sunday I woke up and my throat was sore. That was it. You know you're sick when it hurts to swallow water. And there I was for the next few days...forcing Tylenol in to keep the chills away, avoiding food like the Plague because it hurt to swallow it and unable to keep myself awake. It was rediculous. I hadn't been that sick since I was a kid. I still feel a little off but I'm happy to say that my throat has healed enough for me to be interested in food. And, cross my fingers, nobody else has gotten...whatever it is that I had.

What worried me the most while I was sick was that I had to get Steve to do everything for me and the kids. This shouldn't be such a bad thing but Jaimie had a rough go of it. Not only does Steve not do anything "right" but she can't deal with him doing her exercises or other Sensory Diet stuff. So Jaimie refused her Diet for the last few days. I don't think I have to tell you what she's been like. But with me feeling better, we're getting back on track. I think the worst part is that Jaimie really worries about me when I'm sick. She keeps getting up to check on me. Must be from when I had the babies and left while she was sleeping to go to the hospital. She's never gotten over that.

OKAY...even while laying on the couch trying to still be Mommy-ish for the last few days, I still managed to work on some things for Jaimie's school and teacher that I thought I'd pass along to you all. If you're in the same situation as we are---without an IEP---then there are still things you can do to ensure that your child gets what she needs in the classroom, as long as your teacher and/or principal are open-minded enough to accept the suggestions.

We've been very fortunate that Jaimie's teacher wants any and all information I can give her and truly tries to incorporate it where she can into her regular classroom routine. The best part about Grade One is that Jaimie has her own desk where she keeps her own things and they do specific things every day. For example, Thursdays she goes to the gym, Fridays she goes to Library, etc. So all I had to do was fill in Jaimie's exercise routine around her regular stuff. Here's what we did:

(1) Discuss the why's for the exercises. What helped with us was explaining to Jaimie's teacher the parts of Jaimie's system that are affected and how certain activities calm them. You don't need to be all therapeutic and use loads of jargon; just simply explain to the teacher that your child's body needs specific stimulation and sensory input at certain intervals steadily throughout the day in order to stay organized and calm. If your child sees an OT, see if he or she can give you hand outs you can give to the teacher for her information.

(2) Create a visual chart. At first I thought this idea would backfire. Wouldn't a grown adult find a visual aide sort of...insulting? But I realized that the chart was for Jaimie too so she could show her teacher how she feels so the teacher knows what quick calm-down strategies to try. I made a simple three column table in Word where in the first column I put a little picture of Jaimie's feeling and what we call it in our house; the second column had a full explanation--in Jaimie's words--what she was feeling and what behaviours the teacher would be able to see; and in the third column was a list of "Do's and Don'ts" in terms of exercises and stimulation to give Jaimie in each frame of mind. See, with Jaimie there's really only 3 levels she's at: "Up" or "Fast Like A Bunny," "Low," or "Slow Like A Turtle," and "Frozen" or unresponsive, which is basically a meltdown in the making. This really helps the teacher because before she was just getting Jaimie to jump and dance around all crazy, even when she was "up". As other Senational Moms know, when you get a kid to do the big movement exercises when their bodies truly need calm down stuff, you can push them to the point of no return. It's like giving a kid a huge piece of cake after they've already consumed too much candy and junk: OVERLOAD! Now her teacher knows what to do and when and that's awesome.

(3) Provide a sample schedule. Now the reason "sample" is italicized is because presenting it this way to a teacher already set in her ways will be better received. Most teachers are very good about doing what's in their power to accomodate but there are a few out there who are either totally set in their old ways and refuse anything new or determined to follow the rules. All I did was say that Jaimie needs vestibular/propropriocetive input every 60 to 90 minutes and offered many suggestions on how to give it to her without disrupting her class. Heck, if gymtime falls into any of these time blocks, they can just do some of the exercises there. Unfortunately, they don't have the climb walls or climb ropes and stuff at Jaimie's school but they do have scooter boards, jumping vaults and mini tramps so THAT'S awesome.

(4) Keep those lines of communication open. I made the mistake of being happy to have an awesome teacher interested in helping Jaimie but forgot that this teacher doesn't live with Jaimie or completely understands SPD. She's read Out Of Sync, which is awesome, but books only give you the basics---they don't give you the information about the kid; that's our job. So be sure to ask how your child is doing, what exercises they've used and how they're working and welcome any questions.

From there we just take it one day at a time. I still have to have a meeting with Jaimie's principal because I am still extremely unhappy about how the whole situation about her TA was handled. But I have to do it when I'm well, in a good frame of mind and able to discuss rather than be angry---that won't help anyone, especially Jaimie. In the end, it's really just misunderstanding and now that I've learned how to help clear up that misunderstanding, I have to do what's in my power to do just that. That's how we advocate...by teaching what we've learned.

Here's a fantastic link to refer to about helping SPD kids in the classroom: http://spdparentshare.com/Helping-the-SPD-Child-in-the-Classroom.html. When all else fails, refer the teacher or principal to this link, offer them your copy of Carol Stock Kranowitz's amazing book, The Out Of Sync Child Has Fun, and just keep gently pushing forward. One day we won't have to work this hard for our SPD kids at school...it'll just be natural. Until then, we'll use the resources we have.

OH! And for a little shameless plug, my book, Not Just Spirited: A Mom's Sensational Journey With Sensory Processing Disorder (SPD) is now available at most online stores, including Amazon. Check it out and pass it along to someone you know with a sensational child.

Parents As Teachers...You ARE Sensational

Last year I bought one of Mothering's calendars. They are gorgeous and inspirational with beautiful Mommy/Daddy and baby pictures on every month. What I love the most about Mothering's calendar's is that they give a little theme to almost each day. For example, a few months ago there was "National Hug Day," "Love Your Siblings Day," etc. This past Sunday was "Parents As Teachers Day," and I absolutely loved this.

We don't think of ourselves as "teachers" do we? Often we forget how invaluable we are to our child's life lessons. They watch us, they listen to us (even when we don't think so) and always absorb our pearls of wisdom (even when we don't think so or if they don't think our words are so "pearl-ish" at the time.) And most importantly, as sensational parents, we are also teachers that help our children learn to live in an overstimulating world as well as teach those in that world how to interact with our children. I was glad to have the reminder of us being teachers, especially this week.

For those of you who've been with our blog for awhile, you know about all the struggles we've had with Jaimie in school. I'd waffled about whether to have her in public school initially because she'd be so distracted and worried about how things/people would effect her, it interfered with what she was trying to do. And it was so frustrating trying to help others understand Jaimie's needs.

Our first attempt with Pre-Preschool failed miserably--she just wasn't ready for the social aspect. Jaimie was great with the craft table and the singing/dancing part but during Free Playtime at the beginning, she was "lost." The toys weren't familiar, there was no structure and she had no real interest in the other kids. I had to pull her out ofter only a few weeks. The next year, I decided to try the Pre-Preschool again only I'd give a detailed list of Jaimie's needs and enroll her sister, Jordhan in there too. She did okay at first but she had the same problems with the Free Playtime. This time, I got Jordhan to be her rock. My little Jordy has no fear and loves trying new things. Jaimie stuck to her like glue.

"Just get through the first 1/2 hour," I said to myself each week. "Then you'll be fine." We did the entire program but she still needed more practice. She then did another 2 years of Preschool--with Jordhan right by her side. It was great but I soon realized I wasn't inspiring Jaimie to make her own little friends. And Jordhan wanted to make her own friends and do her own thing, not something that went off well for Jaimie who wanted everything to stay how she was used to. THEN she was old enough for Kindergarten. Oh boy.

We'd chosen not to put Jaimie into Kindergarten until later because, frankly, she wouldn't have made it. So, after having to fight to get her into the school we'd chosen (the principal told us initially that Jaimie was too old for Kindergarten and that we'd have to enroll her into Grade One. WHAT?! A girl who could barely handle the 2 1/2 hours of Preschool 3x a week had to go into GRADE ONE just because her age said so?! Yeah...right.), I started having second thoughts.

Now despite everything, Jaimie is an amazing learner. She loves to read, she loves the structure of school and does like seeing what the other kids can do. But she is very self-conscious because she knows she has things about her that are different. She can't hold her pencil, pen or markers the way the other kids do. She actually had to sit there every time and figure out how to put the writing instrument into her hand to use it. She couldn't cut with scissors or squeeze glue bottles. And if there were ever any projects requiring her to get her hands messy, it was an instant meltdown. I can't count how many times I was called to the school to calm Jaimie down. But you know what? She made it.

You see, one of the things that Jaimie fears the most is losing it in front of people. That's above and beyond what her environment has in store for her. Every ounce of her energy is spent holding on tightly to her control because losing that control is devestating. Then people know something is "wrong" with her and she isn't able to bring herself back down. So, I had to teach Jaimie's teachers how to work with her. Mrs. P. (her Kindy teacher) was amazing with Jaimie and I think it had alot to do with the fact she took the time to understand her. She got down to Jaimie's level and talked to her. Even if it took an hour...that was important to Mrs. P. and to Jaimie.

"We have to do ______ today, Jaimie. Does that sound like something you'd like to try?" If the answer was no Mrs. P. said, "Okay, thank you for using your words, Jaimie. Can you tell me what about __________ doesn't sound fun?" Jaimie would then have the chance to explain how that thing/craft/event would make her feel or what about it she didn't like. "Wow, I think I understand what you mean, Jaimie. Sometimes when I do ___ I feel like ____. Is that what you mean?" The conversation would go like this until they had to come up with "A Plan." These are words Jaimie loved because she felt like part of the process of preparation and it gave her the empowerment to come up with her own solutions. This worked fabulously with Jaimie.

I never told Mrs. P. to do these things with Jaimie; I merely gave her a list of things that worked with Jaimie, words we used with her at home, situations that upset her the most and what we usually did to bring her back down. Mrs. P. came up with those ideas on her own. And we kept the line of communication open between school and home. These are all ways that help our sensational children. We are teachers--we teach people about our child and their needs and people work with us to help them live productive lives.

We still have some frustrations. Jaimie had a TA in the beginning of the year. We were told that she'd only have that TA for a short period of time until we could get Jaimie extra help. Then one day, Jaimie came to school and the TA she'd counted on to be there was gone: the principal moved the TA to the Spanish Kindy class. There was no discussion, no evaluation, no warning and not one person warned me--or Jaimie--that this was going to happen. Jaimie has struggled since. I guess my teaching skills will always been needed as long as Jaimie needs me to be:
* to teach the principal that a child with SPD, Dyspraxia and serious transitional issues can't have sudden very important changes like that without warning or preparation;
* that when a child with SPD is "up" already, getting her to jump around may not be the best exercise to give her and that, perhaps, a more vestibular focused activity would be better;
* and that just because Jaimie seems okay and holding it together for most of her day, my finding her curled up in the fetal position at the shoe rack at school--completely unresponsive and holding back tears--says otherwise.

My point is that our learning about SPD and our children will be a continuous journey. And then we must pass that knowledge on to other people so that our kids aren't "missed" or "forgotten about". It can be hard and very frustrating but keep forging ahead...it makes a difference. In our newsletter this month, we'll be discussing various ways that parents can be teachers and advocate for their sensational kids in school and in the community.

I leave you now with a few amazing things going on. First, Hartley Steiner is having an amazing contest to win clothing from Soft Clothing. Here's the link to Hartley's Blog. Next, if you have a great idea for an amazing educational product you KNOW other families could benefit from, go to Flaghouse.ca and pitch it to them. You may even be entitled to Royalties! And, finally, be sure to check out the latest issue of Parenting Special Needs. This is one fantastic resource for parents of special needs kids.

Enjoy your day!

Some Important November Workshops

We haven't gotten to keep up-to-date on our blogging as usual. We are on what seems like the millionth cold/flu around our house. It's getting frustrating. And, of course, everyone being cranky, tired and under the weather causes us to crank at each other more than usual too. One thing we can do to prepare for such times is to take a few workshops or seminars to teach our sensational kids, and the rest of the family, how to cope during rough times.

The awesome folks over at Heartlight Healing Arts have several phenomenal workshops going on during the month of November. Everything from teaching adults the importance of play, to learning about food allergies to learning how sensory activities can help our sensational kids with homework. The most amazing part is that alot of these workshops are free or next to it so check them out here.

Joan Celebi, Special Needs Parent Coach extraordinaire, is putting on a few seminars. These are wonderful not-to-miss workshops to teach parents how to cope with some of the stresses with dealing with our sensational child. We love them so much but it can be overwhelming. Let Joan teach you how to cope more effectively! Click here to check out her next Lunchtime Teleseminar coming up on the 18th.

Be sure to check out the Lily Wolf website for updates on other upcoming events. Do be patient with us, though. Our server hasn't been friendly with us when we've been trying to post.

OH! And be sure to check out our two contests going on right now. One to win a copy of Jennie Linthorst's beautiful poetry book and/or a copy of Diane Renna's gorgeous picture book. All you have to do for your chance to win is leave a comment or share your story.

Good luck!

As Sensory Awareness Month Comes to a Close...

I meant to post this a couple of days ago but my baby girl, Jaimie, got a really high fever. As I type this, I can hear her coughing from upstairs so I have to make this post shorter as usual.

I did have to thank you all for your support over National Sensory Awareness Month. I enjoyed hearing from you regarding what you did to raise awareness for SPD and other sensory issues in your community. Every small step makes such a huge difference.

I want to let you all know that we'll be extending both of our contests: (1) A chance to win Diane Renna's Children Picture Book Meghan's World; and (2) A chance to win a copy of Jennie Linthorst's poetry book. We'll draw for Diane's book on November 15th and Jennie's on November 30th. All you have to do for your chance to win is leave a comment on the original posts.

In addition, I wanted to let you all know that my memoir called, "Not Just Spirited: A Mom's Sensational Journey With Sensory Processing Disorder (SPD)" went to the printers on Friday and should be released within the next week. We'll definitely keep you all posted. (And, yes, that is Jaimie on the cover. =) )

I have to check on Jaimie now but thank you so much to everyone for your support, your kind words and your individual efforts with helping to bring attention and understanding to SPD.

Warmly,

Chynna

Wednesday's Sensory Resources

It's been a crazy week here so far...and it's only Wednesday!

On Monday, Jaimie was supposed to go on a field trip to see Fred Penner. Jaimie went on a few small field trips last year but this would have been her first big one on the bus. We used the strategies Kathy gave us to work her into the idea, discussed options she could use if she started feeling scared (eg: headphones, squeeze ball, weighted vest, etc.) and she seemed interested in going. When Monday came, she was through the roof. She had been worrying about the field trip so much, she didn't sleep making her more sensitive than usual when she got up. In the end, we decided to keep her home this time. But at least she has the strategies in place to try next time.

Maybe I should have made her go...maybe I should have talked her into it but, in my opinion, if she worries that much about something that's supposed to be fun I don't feel right making her go. All we can do is work through it, talk about it and give her extra courage to try next time. Yes, eventually, we'll need to give her a little extra push to try these things but it's one baby step at a time. I mean, this time last year, it was a physical battle just getting her out the door to go to school; now she's going happily and is excited to go. One thing for sure, she LOVES to learn so that is such a relief.

That's the focus of today's sensory resources: building strategies/options. For kids like Jaimie who not only has severe sensitivity but Dyspraxia as well, getting her whole body ready for things like field trips, Halloween, or visitors is a HUGE deal. For us we do things like:

*Work towards the big day. Start by going to a place with a reasonable level of activity/noise and use a few of your strategies--put the headphones on, squeeze a stress ball, or whatever you try. Practice using these things placing focus on how the body feels without then with them.

*Talk about feelings. I usually try relating to Jaimie's feelings. I'd say something like, "You know, Jaimie. Sometimes when there are lots of people around me, I get nervous and my tummy gets shaky." Then she's encouraged to talk about her own feelings. It doesn't always work right away---alot of the time she needs time to work out her feelings and be able to verbalize but that's why we're practicing!

*Do a countdown. This can be a catch-22 for us because if we DON'T prepare Jaimie, she can become twice as upset with a surprise. But if we give too much warning, she worries then doesn't sleep. Usually starting no more than a week before the event should be good. Write it on the calendar (put a sticker on the event day or get your child to draw a picture on the square) then use stickers or an "X" for each day. Say something like, "OH look! One-two-three... more days!"

*Do a practice run. If you can, go to the place they'll be visiting or talk about what will happen during the visit. Describe what will happen from start to finish. Kids with Dyspraxia need this organization so they can go over it in their minds. On the SPD side of things, it helps them work through what might be there so they can prepare their bodies for the sensations.

*Make a list. All kids thrive on routine. Children with SPD, especially those with dyspraxia too, NEED it. In addition to talking about things and the calendar idea, why not make a visual-type list too. At Jaimie's SPD OT place, they had little charts all over the place with step-by-step instructions. The best part was that it was presented in a fun way! Each chart was an 8 x 11 laminated paper separated into two columns with little Velcro tabs that pictures could be stuck to. The first column is where all the steps are placed, then as each step is done, the square is moved over to the second column. This is done for each step until everything is done! BRILLIANT! So, for the handwashing chart, there was the following pictures stuck on the first column: "Turn on Tap," "Wet Hands," "Soap," "Sing A-B-C," (that's the duration of time you're supposed to wash your hands!) "Rinse Hands," "Dry Hands." DONE!! This is the best visual system I've seen and it seems to really work with Jaimie who always got "lost" half-way through a task then had to start all over, getting more frustrated each time. I'd always wondered when she was little why, if we'd missed a step in a usual routine, she'd freak out and refuse to go further until we'd started over again. Now I understand.

While we're on the subject, I have a few resources for you to check out. With Halloween coming and the other holidays on the horizon (and any of your own child's school events) these are great.

(1) Sensory Smarts - Lindsey Biel and Nancy Peske have a section on their website called "Tip of the Month." This month they talk about easy anxiety about Halloween. Check it out.

(2) Dokedo - Not only is this a great idea for working through anxiety but it can be great to give out on Halloween instead of candy.

(3) Sensory Resources - Check out some fabulous products on this fabulous site.

(4) Online Workshop - There's a low-cost, two-evening webinar coming up that you may be interested in. It's being conducted by two promenint physicians and Lindsey Biel too. Click here for all the details.

Finally, I want to remind everyone to enter to win our contests. You could win a copy of Diane Renna's fantastic children's book and also a copy of Jennie Linthorst's book of poetry. All you have to do to enter is leave a comment or ask a question. Click on the links on Diane and Jennie's name and enter today. (We'll be extending both contests until mid-November and will annouce this later.)

Until tomorrow!

Chynna

PS: If you'd like more information or instructions on how to make your own visual chart, email me!

Wonderful SPD School Tools and Tips for Halloween from Pathfinders For Autism

We are so fortunate to have such a supportive group at Jaimie's school. Not only are they supportive of Jaimie bringing whatever calming tools (also called "figits") she needs to get her through her stressful school day, but they include the entire class in her new SPD tools so that Jaimie doesn't feel "different."

Her Kindy teacher, who actually retired at the end of last year, subbed in Jaimie's class last week and when I saw her we chatted a good 10 minutes.

"I finally have the right word for all of Jaimie's struggles with transition, routine and 'getting lost' during step-by-step' things," I said to her. "Jaimie has Dyspraxia! All of those visual cues you gave her and working her through everything worked because that's what she needed!!"

How smart we were. I knew what she struggled with and her Kindy Teacher seemed intuitive to what Jaimie needed to work through her tough struggles. That same teacher also caught on to the fact that Jaimie "wandered" from the instruction part of her day. It wasn't because she wasn't interested or that she didn't understand, it was because the noises around her---even those noises none of the rest of us hear---grabbed her attention, pulling her away from the teacher's voice. She suggested Jaimie wear headphones or some other noise reduction contraption and, guess what? Now she does. (When the teacher subbed, she made Jaimie wear her headphones whenever Jaimie needed to work on her lessons, when it was too noisy and when she went outside at recess....ALL of the same areas Jaimie struggled in LAST year.)

So, even though this teacher said she didn't understand SPD or Jaimie's needs...she did. We just didn't realize it then. We still have a long way to go before our sensational kids get exactly what they need in school without us having to fight for it but...it's getting better. And with teachers like Mrs. P and Ms. Eisan in the world (Jaimie's Kindy and Grade One teachers respectively), we're in a good place.

While we're on the subject, our next newsletter will focus entirely on our sensational kids in school: IEP tips, informing the teachers and principal, advocating for our kids, nutrition for "brain power" in schoool and other important areas. If there's a question you really want answered, feel free to contact us.

In the Pathfinders For Autism newsletter, Shelly McLaughlin wrote a phenomenal article on how to get our kids through the Halloween holiday. Do sign up for their newsletter if you can. It's chalked full of valuable information and tips as well as top-notch workshops with key speakers.

By its very nature, Halloween is scary. Everything from the decorations, AMC's listing of the top 100 horror films, the inflated price of candy, etc. But perhaps the scariest part of Halloween is trying to understand it through the eyes of our kids with autism. So how do we make this spooky night less of a nightmare?

BOO! Take out the surprise factor

Talk about Halloween ahead of time so your child will know what to expect. Show her pictures of kids in costumes, videos of kids trick-or-treating, and make sure you show your child what this will look like when it's dark outside. Social stories can be a great preparation tool. You can even create your own social story using pictures of your kids in previous years. And don't forget to take pictures this year for next year's story.

Scope out the neighborhood

Take a nighttime stroll through the streets where you plan to trick-or-treat and look at the decorations. Are there any houses you might want to avoid because they look too scary? Talk to your neighbors. Is anyone planning to dress in a costume and scare the kids as they approach a house? You may also want to do an advance visit to any party or Halloween stores where you plan to take your child. I know when you walk into our local party store, you are greeted by a mechanical Jason from Friday the 13th. We all want to avoid months of sleeplessness thanks to nightmares.

Teach the rules of trick-or-treating

Provide step-by-step instructions for how trick-or-treating works. For instance, how we knock on the door and say "trick-or-treat" but don't go into the house, put the candy in the bag, say thank you, and go to the next house. Practice this routine before the big night. Some kids may need days of practice, some kids may be good with only one dry run. Don't forget to go over what to do if there is a break in the routine, for instance if a neighbor is not home. Here's one tricky rule. We teach our kids all year that they should never take candy from strangers. Since our kids live by rules, they may have a difficult time reconciling this rule infraction. You may think that of course you would never go to a stranger's house, but the stranger issue could come into play if you go trick-or-treating at a community center, mall, etc.

Have a dress rehearsal

For a child with sensory issues, costumes can pose some problems. The costume can be itchy, too tight, too loose, too hot or not warm enough. Makeup can be sticky, or smell and feel weird. Masks can make it difficult to see or hear, or cause irritation to the head. Have your child try on her costume far enough in advance that you can make adjustments and alterations if necessary. Easy costumes made from clothing articles you already have may be the perfect route. If your child isn't very enthusiastic about wearing a costume, now may be an opportunity to tie in a passion and let him dress as the character he watches 800 times a month. But also let him know it's ok not to wear a costume.

Make a candy plan

Think pre- and post trick-or-treating. If your child has a restricted diet, you could drop off packages of allowable snacks or small toys to your neighbors for them to give to your child. Or be prepared with acceptable treats you can substitute when your child gets home. If there are some candies on the approved list, ask a sibling if they would be willing to swap. Tell your child ahead of time what he can/can't do with the candy when you get back home. Can he dump it all out and eat the entire bag that night? Will you limit her to a certain number of candies each day? Make sure you don't keep this plan to yourself - share it with your child so expectations are known up front.

Go With Friends

Pair you child up with a neurotypical buddy that can help your child remember the trick-or-treating rules. That buddy can also be another set of eyes on your child amidst the flurry of masquerading candy goers. If your child is an eloper, it might help everyone if your child is wearing sneakers that light up, or has a glow stick or bracelet. And if you have other children, make sure you have a plan in case your child with autism wants to go home before your other children are done.

Eliminate the fear factor

There's a lot going on during Halloween's evening hours that startles the senses. It's dark and there are lots of people running around in scary costumes. Go before it gets dark if your child would be afraid during the later hours or if you need a less crowded time. If going door-to-door is overwhelming for your child, give her the option to stay home and pass out candy, or invite a small group over for a candy swap. Malls and community centers might offer an alternative location, but inquire about the size of the crowds they are expecting. If your child stays home, consider the commotion. Will constant knocking at your door, or the doorbell ringing upset your child? Or the dog barking each time it rings? Or kids screaming "trick-or-treat"?

And perhaps the most important tip: make sure your plan to steal your favorite candy from your child's bag is foolproof.

© 2009 Pathfinders for Autism

Jennie Linthorst: Sensational Mom, SPD Advocate, and Poetry Therapist

Tomorrow is Jaimie's last day at her intensive SPD therapy.

I know that I'm going to end up hugging her OT...I can't help it. Yes, I am a tactile defensive person myself but I'm also very emotional and don't have a problem expressing my feelings. Jaimie has a long way to go...I can see that. But we've all learned valuable tools to help her here at home and at school. We're so lucky to have a fabulous teacher that Jaimie responds to okay who has no problem making life a little more bearable for Jaimie.


Now comes the hard part...we have to plan out our entire day---not that we didn't before but now we have to work in Jaimie's NEW therapy. She has a little brother who also has intense needs. So now my life will be Sensory Diet for Jaimie; speech therapy, eating therapy, behavioural therapy and other stuff for Xander; watching and taking care of little Sophie's precious little heart; and monitoring Jordy's asthma and allergies. It's okay though because that's my job: I'm a special needs Mama. God gave me these little beauties for a reason and I have to be there for them...whether I have had no sleep, feel sick or anything else.


Jennie Linthorst understands this too.

What an amazing woman she is! But what she's also taught us is that while we're taking care of our little ones' needs, we also need to be caring for ourselves. After all, how can we care for those who need us if we aren't well?



The following is the inspirational interview I had with Jennie for our newsletter, "The Gift." Be sure to check out how you can win a copy of her amazing book of poetry, "A Mother's Journey."

Be strong, have faith and check in with yourself often.



Chynna



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This chat with Jennie Linthorst will definitely touch your heart and soul. Jennie is not only the amazing and dedicated Mom to a sensational little guy, she’s also found a creative way to cope with everything that goes on in her very busy life. I can’t say enough about this wonderful women so without further ado, we introduce Jennie Linthorst.


CHYNNA: Jennie I am so excited and happy to have you here with us. Why don’t you tell us a little about yourself.

JENNIE: My name is Jennie Linthorst. I am the mother of a little five-year old guy named Graham, who struggles with Sensory Processing Disorder. The compelling story of our journey with Graham with early intervention therapies is captured in the documentary film, Autistic-Like: Graham’s Story. Go to http://www.autisticlike.com/ for more information.



I also work in the field of Poetry Therapy as a Certified Applied Poetry Facilitator. I work privately with women, exploring their personal histories through reading and writing poetry. I captured my own experience as a mother of a special needs child in my book of poetry, “A Mother’s Journey”.

CHYNNA: Thank you for sharing of your bio with us. Let’s start with your writing. What sparked your interest in writing? When did you begin journaling and writing poetry?

JENNIE: My grandmother, Marion Cannon, was a poet who didn’t start writing until her late 60’s. Her writing was well received and had a very honest, autobiographical style to it. In my early twenties, I began reading her book aloud to a group of seniors at a retirement home, and the reaction to the poetry changed my whole career. I found that the participants responded so intensely to the poetry and it sparked discussion of their own memories in their lives. I created my first poetry writing class for these seniors and we simply wrote in reaction to my grandmother’s poetry. I later discovered the field of poetry therapy, and went on to get my certification, and to create a career in therapeutic poetry writing. I found my own voice around this time as well, and worked privately with a writing coach exploring my own history through reading and writing poetry.

CHYNNA: That’s awesome that you are a Poetry Therapist! You know, I’d heard of Poetry Therapy awhile ago and loved the idea. Writing can be a powerfully healing thing on so many levels. Now, you have two amazing men in your life. Did you want to tell us a bit about them?

JENNIE: My husband, Erik Linthorst is an amazing man. He wrote, directed and produced the documentary about our son. He has become a major advocate in the field of Autism and Sensory Processing Disorder exposing the troubles in the system of diagnosis and treatment options for children who struggle with these special needs. We both hope to inspire change in the system and a separate diagnosis for Sensory Processing Disorder. And of course, my son Graham is amazing too. He continues to be my best teacher in this world, as I watch him work so hard to overcome his struggles with his body and his attention. He has a heart of gold, and his loving of all things shines the brightest to everyone who knows him.

CHYNNA: You and Erik are both doing amazing things for the SPD community and you were both very courageous putting your film out. And anyone who has the chance to see you and your little guy together—like in that gorgeous photograph on the cover of your book—can see the bond you share. Jennie, as you know, Moms just “know” when their child is struggling with something. When did you “know” with Graham? What signs did you see?

JENNIE: As soon as Graham could crawl, he became obsessed with following and crawling on lines and patterns on the floor. He was also consumed with the spinning of wheels. I was in enough “Mommy and Me” classes and things like that where I was watching the other kids play with toys and be interested in engaging people and new things. His repetitive behavior was extreme and by 15 months I knew that he was not “outgrowing” this behavior. He was so social and verbal with us though, that the word autism didn’t quite fit, but the behavior was very concerning. He also was not gesturing or waving bye-bye which is a major developmental delay. He had low muscle tone and he had great trouble using his hands to play and manipulate his environment. We now can see after so much expert intervention that these were all signs of a sensory system that was out of whack, and a body that was unable to motor plan. The behavior was a way for him to comfort himself.

CHYNNA: I think it’s phenomenal that you never gave up and kept forging ahead to find what worked. You are both incredible parents. That must have been so hard on all of you. You’ve personally gone through so much over the last few years with assessments, diagnoses, and treatments. How difficult was all of that for you? How did you cope with it all?

JENNIE: I am very honest in my poetry about how difficult these years have been for me as a mom. I have experienced major anxiety, depression and all of the feelings that come along when you are faced with a child’s diagnosis and a scary path of navigating the right treatments for your child. Erik and I both have sought out self-growth workshops that have been helpful in working on our own inner pain and expectations and judgments of our child that get in the way of being present and moving forward. We continually work on ourselves, knowing that if we can maintain inner peace and love Graham wherever he is in his journey, the more Graham will grow and we will move together as a family. I have to work on it everyday, and especially when we are in a transition like to a new school. The writing helps me be okay with being honest. It’s a way for me to put it on the page and know that it is okay to have those days. It allows me to be compassionate to myself, and to know that I can share my writing with other moms who will feel less alone on their journey. And lastly, we have turned a “crisis” into an opportunity to help others through the documentary, our advocacy and through our work with parents.

CHYNNA: What incredibly dedicated parents you are. I think what I am most impressed with is how you both work hard at being your individual selves so you can be an iron-strong couple and family—so, so important for families with special needs. I love your book of poetry, Jennie. Your poetry absolutely touches a person to the core of the soul. You are very brave to tap into the raw emotions that create such gorgeous imagery. How important is that ability to writing poetry? How can other writers do that?

JENNIE: I believe that everyone is a writer inside. We all have an inner voice, and if you inspire it, and create a safe place for it to express, you will be amazed at what it has to say. I like to tell my clients that a poem is a snapshot of a moment in our lives. We have thousands of those moments inside of our life stories. It is simply about taking the time to capture that snapshot in words. I guide my clients through discussion and inspirational poetry to bring out those moments, and to tap into the whole experience of where you were, what were you wearing, feeling, what was said inside and out- to recreate it through words. That is what I do in my poetry. I take a moment, and work it out on the page.

CHYNNA: I love your expression, “A poem is a snapshot of a moment in our lives,” and it’s so true. Whether an experience was good or bad, stressful or calm, a poem is a fantastic way to get it all out. You’ve done an amazing thing by combing your writing talents with your passion for helping other moms with special needs kids through your amazing “Life Speaks,” website. Can you tell us about that?

JENNIE: On my website, you can view my different class descriptions. All of the workshops are available privately, and many of my clients are from around the world. We communicate through phone or Skype to read the inspirational poetry together, and discuss the personal meanings it brings up for each client, and then I set you up with a writing exercise that you complete on your own and email to me before our next phone/Skype session. The five week workshop for mothers of children with special needs takes the client through the whole story beginning with the birth, the original dream, and then moves to when you know that something may be different, the diagnosis, the inner strength we call upon, how we meet the challenge, how we look for answers and help, how the experience redefines the family, marriage, and lastly the rebirth we experience of acceptance, blessings, our inner healing and our new dream for our children. In many ways, I take the mothers through their own hero’s journey—inspiring them to dive deep, honor their strength, and harvest the wisdom they have gained on this challenging path. The results are truly life changing.

CHYNNA: What a fantastic resource and service you offer. (I was tearing up just with the description of your class for moms with special needs children). I encourage all of our readers to check out your site. Jennie, you also seem very spiritual—I really felt that in several of your poems. Do you find that writing poetry, or writing in general, is a way to connect with that side of ourselves? How important is that for Moms, especially those of us raising special needs children?
JENNIE: Having a child is in itself a spiritual experience—the miracle of it, and the sense that these children come from something greater than ourselves. It was important for me in my own inner healing to find a way to surrender the sense of myself that felt it was somehow my fault, or that it was my responsibility to fix it and control every step of the journey. I have faith that my son’s life is bigger than I can imagine or control. This experience was given to all of us as an opportunity to grow and give back. In my writing, my inner voice is more connected to that place of inner peace, and I find that it will remind me in my poems what I most need to hear, to get back to that place of love and peace in any situation. We all have that ability to find inner peace however you want to define it spiritually or not. My hope is that I can help other moms find that voice of peace.

CHYNNA: I completely agree with you about needing to find inner peace. Thank you for reminding us of how important that is, especially for us Moms. How can we find out more about your work and your classes?

JENNIE: Please visit my website and read through the course descriptions, testimonials and information. You can contact me through the site or through my email talk more and set up workshop sessions.

CHYNNA: Great, thanks for the links. What inspires you in life and in your writing?

JENNIE: Wow, big question. In life, being with others and sharing life experiences honestly and authentically is most inspiring to me. I thrive on real relationships with family and friends. I love to cook warm meals and invite people into our home, to laugh, cry and feel safe together. In my writing, it is the little moments of the days we live that inspire me the most. It’s the moments when that voice inside says, “I feel this.” It’s the thought you have at the grocery store, or on your drive home. It’s the thought upon waking as your child stands beside your bed at 6am. It’s those inner moments with yourself where you are truly honest.

CHYNNA: It’s the simple things that mean so much and can be so inspiring, isn’t it? It’s amazing how having special little ones remind us of that. How is Graham doing today?

JENNIE: Graham just started Kindergarten at the public school here in Manhattan Beach. He is in a regular classroom and is getting services with the school to help with attention, processing and handwriting. He mostly struggles with regulating his body to stay on task to finish center time activities. Fine motor skills are the hardest for him. We are working hard on handwriting, coloring, cutting and gluing. He seems to love school and his friends. We are still doing some therapies at home to help with homework and to get his body moving through swimming, my gym and one on one Neurofit exercise sessions that work the vestibular and visual processing systems through movement. He is super social and loves to cook, sing songs, ride his bike and go to playdates.

CHYNNA: He sounds like one amazing little guy. I’m so happy to hear things are going so well for him. One last question: Is there anything that you’d like to say to the other Moms or caregivers out there who may be out there searching for answers or comfort?

JENNIE: I want moms to know that they are not alone out there. I want them to know that it’s okay to have all the feelings that come up each and everyday with our special children. And lastly, I want them to know that they have all of the answers and all of the inner peace inside them. Just listen to that inner voice and be gentle with yourself.

Wise, beautiful words from a wise, beautiful woman, mom and friend. Thank you so much to Jennie for sharing her poetry with us as well as tidbits about her life as a Sensational Mom. Through the therapeutic experience of writing out her own story, Jennie has created her five-week expressive writing workshop for mothers of children with special needs. For more information about her wonderful writing workshops, please go to Jennie’s website at http://www.lifespeakspoetrytherapy.com/
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Would you like to own a signed copy of Jennie's amazing poetry? All you have to do for a chance to win is leave a comment here or on any of the posts where we've posted one of her poetry. We'll draw for this contest on November 15th. You can leave a comment about our chat, your thoughts and feelings about Jennie's wonderful work, or even write your own poem!