Book Review: Get Out, Explore, and Have Fun!

For those of us with children who have sensory disorders, autism, or Asperger’s syndrome, you know how difficult a day out can be.  Yet, if you are like me, you just know that bringing your child outside will enrich them and make them happy.  How do we bridge that dilemma?

Author Lisa Jo Rudy has written a book aimed at helping parents like us solve this very problem. Get Out, Explore, and Have Fun!: How Families of Children With Autism or Asperger Syndrome Can Get the Most Out of Community Activities shows you exactly how to discover activities to fit your child, how to prepare your child in advance, and how to promote inclusion in all kinds of places. The book is also a valuable resource guide, listing dozens of places and activities, from faith participation to summer camps, from museums to concerts.  You name it, it’s in there.

Each chapter comes with a tip sheet at the end and there are even resources for administrators and directors of the various activities.  Finally, there is a guide for making the argument for inclusion to groups that do not (yet) support it – and how to know when to walk away.

When I read the preface, I felt very moved by this book.  I am a firm believer that getting Zoe out there will help her learn to process and integrate.  That’s why we took a chance and took her to T-Rex restaurant in Orlando, a restaurant with lights, creatures, and lots of noise – not to mention the food.  It was a struggle at first, but the end result?  Judge for yourself:

I highly recommend this book to any parent who wants to stimulate their environment-sensitive child.

Giveaway and Review: “Not Just Spirited”

We have a winner: Sarah!  Congratulations!  Your copy will be sent via USPS as soon as I get your information!

Thank you to all the contestants.

“Not Just Spirited: A Mom’s Sensational Journey With Sensory Processing Disorder (SPD)” is the book by Chynna T. Laird, who just guest blogged for me last week.  It chronicles her struggles to raise a child with Sensory Processing Disorder (SPD), many of which I dealt with myself.

What I like about the book is its honesty.  Ms. Laird does not hold back from telling the reader her feelings in dealing with the various care providers, care centers, and schools she has enrolled Jaime in.  It’s spot on in relaying all the difficulty a parent has when trying to get just the right services to help their child become a healthy, functioning member of society, and how much frustration you experience when your child’s needs are not understood. It’s also a quick and easy read.  I highly recommend this book for parents newly dealing with SPD, but also for parents without special needs children, who want to gain insight on what the life of a special needs parent is like.

The Giveaway – How to Enter
This week, I am giving away one copy of  “Not Just Spirited”.  To enter, simply comment below why you are interested in this book. Feel free to to leave your story as well.  Be sure to leave your email so I can contact you if you win.

Additional Entries:
For one additional entry, you may retweet this contest.  Be sure to return here and comment with your tweet link!

Contest End Date:
I will run this contest from now through midnight, January 25th, so be sure to enter soon.

I’d like to thank Ms. Laird and her team for sharing this wonderful book.  Keep an eye out for her new book releases, coming soon.

Five Things No One Ever Told You About…SPD by Chynna T. Laird

When my daughter, Jaimie, was given a diagnosis of Sensory Processing Disorder (SPD) five years ago, it was both a relief as well as a frustration to hear. We were relieved because we’d gone through two years of knocking on doors, endlessly researching her symptoms, asking questions to the experts, recording every behavior and reaction just to get the answers we needed. After watching our child suffer with something we neither understood nor could help her with, it was an incredible relief to finally understand what we were dealing with. The frustration, however, was that even though we had the diagnosis, we weren’t able to get Jaimie into the right treatment program right away because she didn’t fit neatly into any of the categories that would have given her the “code” she needed for program qualification or coverage for any treatment program. This led to even more research, interviewing and door-knocking but we finally got on the right path.

The number one thing parents need to do is arm themselves with information—not just about SPD but also how to get their child the specified help she needs. Here are five things no one told us about SPD but that other parents can take with them on their own journey:

(1) There are seven sensory systems. The number one thing parents must understand about SPD is that there are seven sensory systems. We’re taught from Elementary school that there are five sensory systems. We learn all about the senses of sight, hearing, taste, smell and touch. But there are actually two more systems that aren’t discussed. Here’s a short breakdown of all the systems:

• Auditory: This is our sense of hearing. It involves not just what we hear but how we hear and how we interpret sounds. (This sense is closely related to the vestibular system.)
• Olfactory: This is our sense of smell. It’s actually the only sense that doesn’t need to make pitstop at a specific processing area in the brain before telling the body how to react. The sense of smell can be a powerfully emotional experience because we often connect certain scents with memories. It affects what we’ll eat, what we’ll play with, who we’ll get close to or even play with.
• Visual. This is the sense of sight. This involves everything we see but also how our brains interpret what we see. Because the eyes use muscles to adjust to light (which lets us focus on objects), it’s closely related to the vestibular and proprioceptive systems.
• Gustatory: This is the sense of taste. It’s closely related to smell (think of when you have a cold and can’t taste anything.) Taste is important because it not only helps us have a good relationship with food but it helps keep toxic things out of our bodies (eg: When things taste bad, you spit it out.)
• Tactile: This is the sense of touch. The skin is the largest organ on the body. This system helps us learn how to interact with the people and objects in our environments. It also helps keep us safe by understanding when things are hot, cold, soft, hard, painful or feel good. It makes us feel safe touching and being touched.
• Vestibular: This is the sense that is closely connected to the cochlear system in the inner ear. It helps us feel balanced, coordinated, grounded and help us with maintaining proper head motion (Helping with vision and hearing).
• Proprioceptive: This sense sends messages back and forth between the brain and the muscles and joints. This system not only tells our bodies how to move but if we’re moving, and how fast. And because it involves all the muscles in the body, it can affect speech and eating (tongue, jaw and mouth muscles), writing and hand grip (fine motor skills) and muscle tone (gross motor skills).

See? There are seven. We always knew there were other problems with Jaimie but until we got her into SPD therapy, we didn’t know the names of the other two systems. Parents need to learn about, understand and inform about the vestibular and proprioceptive systems. Often, a child’s body desperately needs input for these systems too but isn’t getting it—or the right kind of input—because people don’t know about them. Get the word out!

(2) Coverage for treatment isn’t always there. This is a real frustration for parents who can’t afford the, often, rather expensive SPD treatment their child needs. You see, many people in the medical profession don’t see SPD as a separate disorder. It’s often felt that it’s part of other neurological disorders such as Autism, Asperger’s, ADHD and others and, therefore, will be treated along with the main diagnosis. However, SPD is a separate disorder with its own symptoms, treatment methods and diagnosis. I usually invite people to visit the phenomenal continued research conducted through the SPD Foundation to reassure any questions or doubts they may have.

(3) SPD can be treated. Some children will live with SPD all of their lives while some with milder forms of SPD “out grow” their sensitivities. But all of these children learn to ‘reconnect’ their brains to process sensory information effectively through specific treatment with a trained occupational therapist (OT). OTs expose children to sensory stimulation through play and fun activities so they learn how to tolerate and cope with the stimulation. Knowing that SPD can be treated offers parents hope for their child’s future—an assurance that their child will still be able to live a productive and happy life.

(4) It’s a long road. One thing that we didn’t realize was that treatment can be a long road with many bumps to endure. We knew the areas Jaimie needed help with but finding the exact things that her body craved was the challenge. Parents need to remember that their sensational child’s needs will change from one day to the next and so will the tools, exercises and activities that their body’s need to calm down or get going. It can be frustrating, believe me I know. But parents should be patient and work with the OT, try different treatment methods out there, have options to offer their child and go with the flow. Eventually, the child will be able to tell his parent what his body needs or simply go to the exercises and tools he needs on his own.

(5) Advocating is more than telling what’s ‘wrong’. Once parents understand what SPD is, how it affects their child and what their child’s exact needs are, they need to be able to go out there and advocate for their child in the community. When they are younger, children with SPD depend on their parents to inform others about their disorder so they get what they need to function effectively. What I often forgot about in the beginning was that advocating for Jaimie meant that I need to not only tell people what Jaimie’s struggles were but I also needed to tell people what her strengths were. We don’t want people to see our child with an SPD label stamped on their foreheads. These children excel in areas too and we need to have those out in the spotlight as well. Advocacy is fighting for our child’s welfare and rights, that’s true; but it’s also about raising awareness through giving information, discussion and getting people talking. Getting people to see the child as a whole is what advocacy is all about. Besides, we need to be teaching our child how to advocate for himself one day so what he sees us doing for him today encourages him to take on himself tomorrow.

The only other thing I can bring into the spotlight is that siblings are often very affected by what their sister or brother is going through. They don’t understand the outbursts or what they may have done to trigger them or why their sister needs all the special toys or tools or why they have to have so much extra attention. We try including our other children in all that we need to do for Jaimie because, ultimately, they need to understand too. They may have to explain why Jaimie reacts the way she does sometimes or be asked why their sister needs headphones and sunglasses when she goes out or why Mama is pressing or massaging her muscles and joints. Giving siblings the power of information makes them feel like a part of everything and, in their own way, they can help.

And that’s an amazing gift.

Product Review: SmartKnitKIDS Seamless Sensitivity Socks

UPDATE: Frugal Plus is giving away these socks!  Sign up now to win.  Hurry, contest ends 10/19!

If your child is like mine and struggling with a sensory disorder, you know that getting dressed and KEEPING those clothes on your child can be a real struggle.  As I’ve mentioned, my mornings have  become really hectic because Zoe won’t keep her clothes on when it’s a school day.

Socks are a super-big problem for my girl.   She hates them.  And even if the floors are cold, when she’s peeling off her clothes, the socks go.

Except for SmartKnitKIDS Seamless Sensitivity Socks.  The company sent me a sample of these socks to review. They come in bright boxes with smiling, green bug on them. As soon as I opened the box, Amelia grabbed them right away, opened a box and put them on. She loved them and, although she doesn’t have sensory issues, she has become really bothered by socks that bunch up in the toes. They do a lot of walking at school and socks matter.

Zoe, however, loves them too.  She will strip down to her diaper whenever she is indoors, but these socks stay on.  I’m absolutely astounded!

They are easy to care for, easy to put on, and because they are slim and snug, the dog has  no interest in eating them, lol!

I highly recommend these socks, especially for kids with sensory issues. They come in a variety of sizes and colors.  You can get them at www.smartknitkids.com.

Autism, Down Syndrome, & Environmental Factors: Cause for guilt?

Today I read, “Considering the Cause of Autism“, and I think you should read it. It’s terrifying in its scope of statistics.   Then I read the end, which said that pregnant women today need to completely detoxify.

Maybe I’m just reading this on the wrong day, because I am having a “can’t do anything right” low self-esteem day, but honestly, with that many toxins out there, how?  What about someone like me, who has to take injections just to survive the pregnancy?  What about someone who can’t afford to buy all her water and eat everything organic?  (I mean real organic, not the hyped up fake stuff.)

What about shower water? Soaps and shampoos?  Swimming in pools or lakes or even oceans?  The HVAC system at the office?

And, where is fate in all this?  Can a woman honestly control all her environmental factors?

You can look at me and say Amelia got Down syndrome because I was too old (36), lived in the city, worked in an office, and ate junk food.  Or you can say I have a sensitive system and that’s the root of Zoe’s sensory issues.

Or, you can realize that sometimes it’s a spin of the wheel of fate. If all the above WERE true, why didn’t anyone -or everyone- else in my family (chock full of late in life, full time working, city dwelling moms) have a child with these conditions? And the more I learn, the more I just fear.  I can’t walk into any supermarket now without feeling like someone is out to get me, and on the checkout line, no matter how careful I am selecting healthy choices, I feel like I’m pushing dope on my kids.  It’s like food comes in two varieties: the kind that kills you and the kind I can’t afford.

Life is just this: a crap shoot, where everything happens for a reason. There are smokers who will never get lung cancer, and lung cancer victims who’ve never smoked.  I’ve done way too much duty on the guilt train and I’m done with it.

What are you thoughts on toxicity and pregnancy?  Is this part of life we have to accept, or are we on the road to doom? Can we really do anything about it?

The Rewards of Children Growing Up SLLLOOOOWWWWLLLY

This weekend was interesting for me. We had Zoe’s birthday party, and invited some friends who we had not seen in a year. This is of course a big deal when you have small children. I was excited for Amelia to see Kayla, who is about 8 months younger than her. I had expected they would get together and do their typical running around, looking for Amelia’s princess gown, get naked and get dressed.

I was sadly mistaken. Kayla was looked 5 going on 10, and had no interest in SuperWhy, or Dora, or Disney stuff either. She was into Hannah Montana who Amelia couldn’t care less about. They barely recognized each other, Kayla who was always big, had shot up and looked like a typical 5 year old, and again Amelia was left in the dust.

The next day we went to Kayla’s birthday party, and at the store, we bought a Hannah Montana doll. Now, Amelia does a little dress up with her dolls but mostly on herself, and doesn’t really care for Barbie or anything like that. As I was in Walmart looking at H.Montana, Bratz, and remembering my recent reading that they were going to “pretty up” Dora, I realized that I was suddenly content where my girls are.

I know, this sounds stupid. I don’t want them to be behind, but I’m really ok with them being a little slower at this age, if it takes them that much longer to get to the “I have to have it ’cause it’s sexy”, “I need to have this thing”, “I want to watch Gossip Girl, and I’ll just do it behind your back” stage.

Later that day at the party, we met all our friends from our former church. The pastor’s wife Amy, who is just about as awesome a woman as can be, told me that she held her son – who turned 5 this June – back from kindergarten because she didn’t want him to be overwhelmed and fall behind. This was “a really hard decision to make”, but I applaud her. I keep wondering, what the heck are we doing, racing our kids around to some imaginary finish line?? I keep being told that 42 isn’t too old to go back to college, change careers, become a writer or novelist. If that’s true, why do they have to HURRY UP and get into college at 17, decide what they want to do in high school, and speed them up to wear short skirts and long lists of desires?

Amelia may need to repeat Kindergarten, she may not graduate high school til the typical DS graduate age of 21, and she may always need some help.  Zoe may not speak in complete sentences for another year or two, may have to learn to cope with groups before really integrating into a school setting, and may always prefer being quiet and alone.

Or not.  Either way, I’m totally fine with going slow…

Upcoming posts: Amelia’s cardiologist visit, Amelia in kindergarten, Zoe turns 3, fall is under way…

A Visit to the Psychologist

Yesterday was a ROUGH day. It began the night before with Zoe not sleeping and the voices in my head trying to make the argument that I absolutely SUCK at EVERYTHING.

I had to bring Zoe to a recommended psychologist to start the process of a formal evaluation in order to get proof for medical assistance in order to get her an aide (TSS) for daycare. By this point in the day, I was feeling like human waste, emotionally. It doesn’t help listening to Joyce Meyer and Eckhart Tolle telling me that everything is about ego, and feeling badly is just another sin – or manifestation of ego. In fact, that made the whole day nearly impossible.

What I did not realize en route to the doctor, after spending 15 minutes driving in circles to find a place that I “can’t miss”, was how difficult it is for me to recall and review Zoe’s developmental history. That did not make me feel good at all and Zoe was, as usual, difficult to manage in a small sitting area, but the topper on the proverbial cake was when the psychologist brought up the “A” word.  Yea, I mean “a” as in “autism”.

In the car ride home, I did what I NEVER do: made deals with God. I’m so ashamed I did that. More and more I feel my kids are under God’s protection, in a way, because that doesn’t necessarily mean bad things won’t happen to them. Most parents don’t know until their kids are much older how little is in your control, but special needs find out real early.

But I’m not going to worry about Autism spectrum disorder (ASD). I can’t claim that for my baby, it feels like a life sentence, which is exactly how part of me feels about Down syndrome. And yes, I know that sensory disorder is brain related and permanent too, but ASD puts Zoe in a completely different type of category. I don’t want her there, and I’m going to hope for the best that she ISN’T there. And believe. And pray.

Zoe’s therapist, a 20 veteran who has known Zoe for 6 months, said it’s not autism (spectrum disorder), BUT of course, I’m thinking, Is that what she said exactly? Did she?

Yea, so you might have guessed that the whole ride back to daycare to pick up Amelia I cried because this was just more junk on my emotional s*** pile. I drove and thought, I don’t want to feel this badly, sin this badly or let the devil or ego or whatever win. I said to myself, You can have the day, but you’re NOT getting my night. It wasn’t easy, but I sang at the top of my lungs the uplifting songs on the Christian station (who cares if I believed them or not?)

Last night, I set about my duties as a wife and mother. I got the ultimate compliment during dinner when BOTH Amelia and Chris complimented my meatballs. It’s a small thing, but I felt so good. When negativity strived to enter my mind, I relaxed and thought about how tired I was and the thoughts just melted away.

I should have known, too, after praying big that the negative influx would come in big time too. Now I’m not worried anymore. I will continue to dream big for myself and my kids. Today, I remembered there is a first chapter writing contest I want to enter. A friend has some work for me, so I’m going to be honest about my qualifications and let him decide to hire me or not. Last night, Zoe decided to sleep with Amelia (so adorable), and Amelia could sleep through an earthquake I think, so Chris and I got some well-deserved sleep.

Tomorrow I will see my family. Life is good, and better yet, it’s Friday. Faith & Family Friday…

A New Therapy for Zoe?

Today I got the brilliant idea to pray really big for my family.  One of the things I prayed for was Zoe, that somehow, someway she may be absolutely, miraculously healed of her sensory issues, not just at a therapeutic level but also at a brain level.

Just now her OT called me.  She has a new therapy that she’s had a lot of success with in getting kids to talk.  Zoe is actually progressing nicely except in the area of speech.  She understands what she wants and she CAN communicate her need now, but she has a hard time speaking and she is having difficulty with both PECs and sign language, due to her hand sensitivity.  This new therapy involves sound directly into the ears, and at daycare would require headphones.

YEAH RIGHT.

The OT wants to try this at home, using a small room like the bathroom and a recording for the next few months.  I’m pretty excited.

This also feels like confirmation about “praying big”.  Things don’t always move THAT quickly, but I’m working to envision my children happy, healthy, and with careers that they love, and maybe even families of their own.  I’m envisioning not “coping” with their special needs, but conquering them completely.

And yea, I’m praying big for hubby too, and that’s ALL you need to know. 

Daycare and Special Needs: Part 3

This has been a journey, one that has not been easy, but today was very interested.  The daycare, one of Zoe’s therapists and a 3rd party that intervenes in situations like this met today to discuss Zoe for the first time and Amelia for the second.

The evaluator – first time I met her – was simply amazing.  She has an autistic child, so maybe that affects things, but man she knows her stuff.  We are looking into getting a mentor, and I’m still having no luck getting a TSS (we’d qualify now that Zoe is into head banging) because I don’t have Access (just turned down because of my next point, argh), because I can’t get Zoe an official diagnosis.  Grrrr…  Anyway the mentor, if available, can only come 3 times a week for 1.5-2 hours at max.   Zoe is improving but she had a REALLY bad week, (see my last post) and the daycare still needs help.

Sadly, the teacher, who is a sweetie, noticed that Zoe is treated “like a dog” by the other children.  They step on her and such.  She does not have the social skill to defend herself (verbally or by calling for help or any other way).  She has only been learning to stand up to Amelia the last few months.  This is painful for me, but the evaluator was already recommending a particular social skills inclusion program for the whole classroom.  I’m hoping the director purchases and participates in it.

As for Amelia, they thought SHE’D be better suited by a mentor, but her only issue is actually potty training – she’s taking too much time away from the other kids because she’s not trained.  The mentors cannot participate in this area, so they are now talking about hiring a part-timer to help her (they’d get funding).

Amelia is still on the outside as well (big surprise, I have two kids who are outsiders…need to BREAK this cycle!)  Her teacher is now convinced that Amelia’s allergies are making her run down and anti-social.  I’m not sure about this theory, but it’s worth a shot.  Evaluator is recommending an allergist and something like a neti pot, but it’s a nasal spray.  (EW.)  She swears this has helped her autistic son and now the whole family does it daily.  Yea, ok, the girl who won’t let me wash or comb her hair, the girl who screamed from about 9months on or so about the nasal bulb is going to let me drain her sinuses.

lololololololololololol….

We’ll have to ’see’ about that one.  All in all, it was a good 2 hour (!) meeting and I feel good about and about progress.    Amelia also had some testing for kindergarden today and I’m so proud, she did VERY well.

That’ s my girl

Good news!

Today Zoe signed “more”.  And she did it more than once, she did it for the therapist at daycare on her own.  Then she did it for me to show she wanted more of this or more of that.  She is *slightly* verbalizing more.  I can get her to say “clap” and “banana” and she is starting to mimic a few more words more frequently, but under her breath.

Slowly but surely we are getting there.  God is good. 

Oh and other good news: just as I was wondering how/when I would ever get to go on a field trip with Amelia, I discovered that Amelia’s afternoon field trip next week is just after my meeting about her kindergarten, for which I took the day off. COOL.