Work

A lot of people are looking for it. Evidently being a mom doesn't qualify (at least in some people's lexicon.) A few people are addicted to it, but a lot of people wish they didn't have to do it.

I have kind of an interesting perspective on work. I have tried to juggle work and being a mom in just about every combination known to woman. There are pros and cons to each situation, and I still haven't figured it out by any stretch.

I was a full-time mom when the child was a newborn until she was 8 months old. Then my maternity leave ended and I "went back to work." She was a pretty demanding baby, a function of what we now understand as her sensory disorganization and oral motor challenges. Honestly I was pretty overwhelmed with her care, and just starting to hit my stride when I resumed my teaching position. I'm very glad I had that time with her, but since I had expected to return to work I didn't really allow myself to settle into being a mom.

When I returned to my job my husband and I had a strategy to keep us both working and to keep the child out of daycare. It worked for a while, but we were stretched thin, and we knew it early on. It didn't make sense for me to keep working and essentially hand over my paycheck to someone else so they could be with our daughter. So I finished out the academic year and returned to full time momming.

It took a while for me to settle into my role as a stay at home mom. I wasn't bored (too busy for that...) but I did miss the sense of accomplishment that comes with completing a project or knowing that you've truly been helpful to someone. Somehow folding the laundry didn't quite cut it. I still enjoyed the new freedom, though, and explored some new hobbies. Just when I was starting to get in step again, the twins arrived on the scene, and the child's issues came front and center. Suddenly we were stretched again physically and emotionally. The economy shifted, and now here we are...

It became clear that I needed to start working again, this time from home and in partnership with my husband to boost our income a bit. I have to admit there is a piece of me that is loving the feeling of professionalism, and problem-solving, but it may be the worst of both worlds. I am distracted from my kids who still need a lot of supervision and training, I'm limited "at work" by what my kids need, and I'm still seen as an "at home mom" who has so much free time on her hands to...

The point is, work is important. It is important not only as a means of support for our families, but as a fulfillment of a basic human need. Adam and Eve worked in the Garden of Eden even before that whole apple incident. Their work was satisfying and fruitful without the drudgery that stifles us today. We were made to work. In whatever way you work - in or out of your home - it's important to understand that you're striving to do what you were made to do, but in a world that is waiting to be restored. It won't ever be quite perfect.

Waxing eloquent on the Wonderful letter W. Click here to see the other works of art...

Tourette Syndrome Primer

In hopes of broadening the scope of my posts I recently started a new series where I will try to highlight one special need and if possible a hero who, in spite of their challenges, inspires all of us to reach a little higher. I've been collecting a list of sorts of various special needs. If you care to comment here I will add your suggestions to my list. This evening's post came to me via twitter direct message from father and author, Robert Martinez.

Mr. Martinez has recently published a book about his son, Brandon, who was diagnosed with Tourette Syndrome at age 7. I have not read the book (yet) but I did read a short excerpt posted on his website. This brief look at Brandon's struggles definitely made me want to know more...especially with the tease of knowing that "Born to Play" is the story of how Brandon eventually is chosen as the seventh round draft pick for the Dodgers (you know, professional baseball!) I'm just imagining the various hurdles, barriers, social pitfalls and physical exhaustion that had to be overcome to get to that place.

Tourette Syndrome (TS) is a neurological disorder that manifests as involuntary movements and vocalizations (called tics) often occurring at the same time. Generally these tics are evident before age 18 and for a formal diagnosis must be present for more than a year. Infrequently the vocalizations can include obscene or socially inappropriate speech - this is widely publicized but does not actually occur very often. I was interested to learn that echolalia, often associated with autism spectrum disorders, can also be present in TS. Echolalia is a pattern of speech where the affected person repeats their own words or others' words. Many people affected by TS also struggle with learning disabilities, ADD/ADHD, Obsessive Compulsive Disorder, anxiety and depression. The educational and social challenges associated with TS and these co-morbid conditions can be devastating. TS was first described in 1885 by a french physician by the name of Georges Gilles de la Tourette. The direct cause of TS is not known. There is a clear genetic component as often several family members are affected by tic disorders. Interestingly, again like autism, boys are 3-4 times more affected than girls. For mild cases of TS, treatment consists of support, education and "watching." Depending on the severity of these conditions, medications are used to bring the tics under control, such as:

• clonidine (Catapres)
• guanfacine (Tenex)
• risperidone (Risperdal)
• haloperidol (Haldol)

To learn more about TS, I recommend visiting the National Tourette Syndrome Association.

What Will They Be When They Grow Up?

Today's action post will be a bit different...instead of telling you about a charity that works with special needs children I want to tell you about a business that hires special needs adults. I guess every parent hangs onto the apron strings at some level. Though technically your job as parent ends when your child turns 18 years of age, or at the outside 21, everyone knows that once you're a mom or dad you are always a mom or dad. I'm just guessing (since we are nowhere near this transition yet) but I bet the apron strings are more firmly tied for parents of special needs teenagers and young adults.

Consider the current economic environment. With double digit unemployment nationwide, and much higher in some states and cities, how much harder is it for young adults with special needs to find jobs they can be independent and successful in? Even normative adults are challenged to find work these days. Meanwhile, the special needs population is going to continue to grow as the number of autism diagnoses alone continues to climb. Kind of a special needs worker boom looming on the horizon. Should we just send them all home to watch TV and twiddle their thumbs or should we start now to develop job training programs and employer accommodation programs that will make it possible for special needs workers to be successful and productive. Maybe we could get ahead of the curve on this one?

I read this article at The Autism News today about "Men with Mops." You can read another article that gives more information here. Men with Mops is evidently a private business affiliated with Rutgers University's Douglass Developmental Disabilities Center. The idea of building a business that is centered around adults with developmental disabilities may be daunting to some, but consider what steps you could take in this arena:

* Encourage business owners to learn about special needs accommodations.
* If you are a business owner, look for ways to include a special needs worker in your model.
* As a parent begin early to consider what job skills your child needs to develop in order to find a suitable workplace in the future.
* Consider finding a Men with Mops equivalent in your area and offer to be a job coach, or help them recruit work opportunities.
* Advocate for job training programs and employer training programs in your area.

Book Review - Emergence, Labeled Autistic

I have been thinking about this book quite a bit lately. It is a book I read shortly after our daughter's initial diagnosis of an autism disorder. I was reading everything I could about autism, but I was especially interested in trying to "get inside" my daughter's head and understand what she was experiencing. A good friend recommended this book. For those who may be unfamiliar, Temple Grandin, the co-author of this book and several others on related topics, is autistic. She was diagnosed with autism as a toddler (early 1950s) and struggled to overcome her various challenges and succeeded in many ways. Her mother, in particular, refused to accept certain expert opinions that her daughter's autism was cause for sending her away to an institution. Instead she devised an intervention program with speech therapy, play therapy, and individualized education programs at private schools. Thanks to her mother's perseverance, Dr. Grandin eventually learned about animal behavior, earned her Ph.D, and now teaches animal science at Colorado State University.

Dr. Grandin writes about several interesting facets of her autism. One is that doorways had a great sense of meaning to her. In particular she was anxious about passing through automatic doors, essentially having to force herself to run through them in order to enter a store; but at the same time she was always looking for what she called the "door to heaven", a doorway that would lead her to a place of comfort and calm. She also learned that she liked to feel pressure all along her body, but could not accept this sensation from human contact - a hug or embrace. While visiting her aunt she discovered a cattle chute and experimented with developing a device for people that would provide the "right" amount of pressure to calm them. Her experiments with this device eventually lead to her career in animal science.

One thing I've learned from reading this book is that reading one autistic person's biography is not sufficient for "getting into the head" of another autistic person. There is a saying that if you know one autistic child then you know one autistic child, and I have found it to be quite true among our special needs community. There are some interesting parallels, though, in Dr. Grandin's story and things I observe in my daughter. Doorways signify transitions, a common challenge for people with autism. Interestingly, my daughter is currently fascinated with the automatic doors at our nearby supermarket because there are four swinging automatic doors, but only two are for going in and two are for going out. The other day she wanted to go "out" one of the "in" doors and I explained that it wouldn't be safe to do that because if someone else was coming in she might get hit with the door. Now she just wants to choose which door to go in (or out) but she always comments on how we have to go in (or out) the right ones. Another similarity is the need for pressure. My daughter currently seems to crave this around her head area. When she is at home she has a white mesh laundry bag that she ties around her head as if it is a wig of hair.

Dr. Grandin's story is one of challenge and success, and one that I think is quite enlightening and a must-read for those who live and work with autistic individuals. It is definitely an encouragement to all parents of special needs children to support their children in any effort to find their place in the world. It just might be a very significant place.

Sunday Digest 5

1. I spent this afternoon making a weighted blanket for my daughter following directions I found here. For those who are not familiar with these, they are used by individuals who have sensory processing disorders to help provide calming input to aid the person in sitting calmly and quietly for a longer period of time. I am not a seamstress by any stretch of the imagination. In fact I had to dig out the book for the sewing machine to remind myself how to wind and load the bobbin, and how to thread the machine. However, using the instructions above I made a decent looking 4 lb. blanket. It was also not too expensive. I used an old flannel pillowcase that we weren't using for one side of the blanket, and bought a textured baby receiving blanket for the other (I figured some tactile input built in might be a good thing). I also bought some poly-pellets (for the weight), and some iron-on decorations. I'm not sure if this method would work for heavier blankets. My arms are quite tired from holding the blanket on the machine, but for a little lap blanket it was so easy and did not take too much time (maybe 7 hours total). My daughter was so excited that she actually helped make the blanket by running the foot pedal and helping put some of the beads in. Overall a very satisfying experience.

2. I have a birthday coming up this week and I'm feeling quite old. This Summer has really worn me out physically and emotionally. Yesterday I saw this give-away at Hopeful Parents, and wanted to let other special needs moms know about it. I know I tend to put my kids' needs first so much that taking care of myself, much less pampering myself with a new handbag drops way down on the to-do list. Enter for your chance to win this custom reversible bag by 1154 Lill Studio. Very chic, and roomy enough to handle all of your "extra" kid gear.

3. I've been following Specialgathering's blog for several weeks now. Earlier this week there was a post/comment discussion about appropriate worship for special needs members that I thought was really significant. The church spends a lot of time talking about making worship appealing to our culture and whether or not that is a good idea. This community of special needs adults is considering how to best meet their special needs culture in worship, and it seems an important step in the right direction to me.

4. School is starting soon. A friend of mine is planning to home school her two oldest children this year for the first time. We at one time were interested in home schooling, but given our daughter's special needs didn't think it possible. According to this article there is a subset of home schooling parents whose children are autistic. I'm still not sure it would work well for our family, but if you are interested there are some resources listed there.

5. And beyond school, "What do you want to be when you grow up?" perhaps a conversation starter for you and your special needs child. I think at last report our daughter wanted ME to grow up to be a firefighter...I'll have to see what she says now...


You can see a list of Sunday Digests (and other posts) here.