Excerpt From Chapter Two

Bugle Call

I am NOT a morning person. Years of night shift have only exaggerated this problem. I’d like to think I have fibromyalgia or lupus. I think what I actually have is children. Most mornings I get up at “when my kids do”. I recently had a run of a few weeks where I got up before they did. That really works out well. I noticed our days generally went along better when we had that good running start. It fizzled out pretty fast. One would wonder why something that seemed to work so well ended so easily and so soon after it was instituted. I was tired. Yup, it IS just that easy! You see, I am the mom to exceptional kids. Let’s break that word down- ‘exception- al’. My kids definitely have a lot of exceptions, and, well, sleep is no exception (ha, ha!). Drew didn’t sleep through the night until he was almost 4 years old. Remember the dramatic, life threatening tonsillectomy? The purpose behind that was to put an end to his obstructive sleep apnea. We discovered he had sleep apnea when he was about 3 ½ years old. By that time, I had a newborn. We finally got Drew sleeping through the night just in time for Evan to STOP sleeping through the night! Why do babies do that? It’s so deceptive. Evan started sleeping through the night around 2 ½ months old. By the time he was 8 or 9 months old, all hell broke loose and he wasn’t taking bottles from his dad when I was at work and he was waking at night to breastfeed when I was at home. This was right about the time Drew started sleeping through the night! Evan was trained to sleep through the night again shortly after I weaned him from breastfeeding, so around 14 months- don’t judge. Evan was a champion breastfeeder extraordinaire! And you have to remember that by this time we had known for a couple months that he was highly allergic and I was thinking putting off milk as long as possible was a good thing! Anywho, I have gone WAY off topic! Tiredness, is the topic, if you have forgotten as well. By the time I had had a couple months of good uninterrupted sleep (although I was still working night shift on the weekends and that really destroys your circadian rhythm) Ryan had his hours cut at work. We decided he should quit so I could pick up hours at work whenever they needed someone as he would be a stay-at-home dad. He did and I started working around 45 hours a week. He found a new and better job in less than a month- right when work could change my schedule to full-time. Bad to worse, within a week, I found out I was pregnant with baby number three. We had planned to have this baby because Ryan would be a stay-at-home parent and we had lived off my full-time income before. What we hadn’t figured on was two full-time working parents so fast! I told my manager the situation and she said she could change my schedule, but not until the next schedule was put out- 3 months away! Hello, Tiredness, my old friend! So, I eventually got back to part time and then had another newborn waking me up to breastfeed. Why is she telling me all this, you are thinking. I’ll tell you why I am telling you all this. Chances are, you are extremely tired too. And chances are you don’t have fibromyalgia either. Chances are, you have “Children” just like I do! And you have a particularly virulent strain of Children, too- the special needs kind! So, did our days seem to go better when I got up, exercised, showered and got dressed before the kids got up. Yeah, of course they did! Am I kicking myself that those days are few and far between? No. I have had to make peace with settling for survival.
And that, my friends, is Rule Number One to Raising Exceptional Kids- Make Peace with Settling for Survival. Would I love to be the woman who keeps a scintillatingly spotless house and perfectly behaved and groomed children with gourmet meals three times a day? Give me an A-MEN! But that will never happen (please don’t tell my husband, he’s still holding out hope). I am still reaching for a path through the clutter with only a few crunched pieces of cereal and other debris visible, reasonably unsullied somewhat obedient kids and ANY meals in a day that I prepared! But we all make it out alive and healthy enough to the end of the day. And that’s enough. Celebrate your successes. Twenty minutes of speech therapy practice in any given day at my house has taken the place of getting my Bachelor’s degree in nursing, losing 50 lbs., and winning $1000. Celebrate your successes!
I am terrible at routine. I always felt so guilty about this. I think it has served a greater purpose, however. Evan has been able to develop some flexibility where other Autistic children may have not. I can’t know that is all because of me for sure, but I love to tell people that it is! This brings us to Rule Number Two for Raising Exceptional Kids- Do What YOU Do Well, Not What Other Moms Do Well. I have tried strict schedules at least once a year for the 6 ½ years I have been raising kids. THEY NEVER WORK! They don’t work because I don’t do schedules! Is there room for improvement in this area? Of course (I’ll add it to my ever growing list of “Areas for Improvement”). But I will never be a strict schedule mom. I have to do what I do well. How do I function without a schedule or routine when I have an Autistic child? We use a timer. When I am ready for him to do something, I give him a set amount of minutes to finish what he is doing (there is sometimes room for negotiation). I make sure he verbally acknowledges that he understands that when the timer beeps his minutes are up and we are moving on to the following task. It works like a beaute! It is what I do well.
I have strayed so far of course from describing our morning routine that explaining what happens next in our morning routine should be very easy for you to visualize! The next objective is breakfast and clothing for everyone. I rarely, if ever, eat breakfast. Again, this is bad. I am not saying this book is a “Handbook on How to be the World’s Best Mom”. It is the reality of parenting exceptional kids. The boys usually eat breakfast at their little table while they watch cartoons. This gives me time to check my e-mail and my groups at a website for moms. I am the owner of a group that supports moms in the process of getting their kids diagnosed with Autism Spectrum Disorders and a group for moms with skin problems and I am a member of groups for moms with cleft kids, moms that belong to my religion, moms who are nurses, moms with three or more children, moms of boys, moms of toddlers with asthma and allergies, moms with migraines and then a couple groups just for fun. I find that I end up fielding mail from a lot of moms with questions because I am a nurse and from a lot of moms with kids with similar “exceptions” as my kids who haven’t gotten as far along in the process as I have. I also have a few friends that have become a great support to me! It really fills my bucket. (I am fighting the urge for another rule- hang onto that thought). But, I am SO easily distracted that the minutes fly by and we are often “late for lunch”.
Okay, Rule Number Three for Raising Exceptional Kids- Find a Way to Fill Your Bucket! Some women are married to great bucket-fillers. I am not. He is a great dad. He is a great man. He is even a really considerate and thoughtful lover- I know, hard to find. But, he has yet to perfect the bucket-filling technique! I think we all have different ways that our buckets are filled. Part of the way I fill my bucket is by being that mom that helps others. I love to get online and read posts from other moms, make my reply and find a message in my inbox the next day thanking me. It makes me feel valuable and useful. I have also found some moms who know what I am going through and are invaluable when it comes to venting about what is going on at my house. Again, it fills my bucket. Some of these moms are online friends and some are women I met at church or at my kids’ school, etc. I find both helpful. I also have a few “guilty pleasures” that fill my bucket. I LOVE to get the kids in bed and put in a DVD of “Monk”, “The Dead Zone”, “Music and Lyrics, “The Holiday”, anything that makes me laugh, makes me feel love, passion, happiness- but especially the laughing. Ryan sometimes teases me that he heard me laughing from the other room. I can’t help it. It fills my bucket. Humor is a HUGE part of me and I need that! I have found exercise to be a vital part of this rule. Endorphins can do you a world of good. I love yoga, pilates, and walking with a friend (that is a two-for-one!), but you may have other favorites. Find a way to really fill you bucket- support groups online, in person or both, friends, family, TV or movies, books, exercise, some combination of all the above. Find healthy releases to give you what you need. Avoid things that you think may just be a “guilty pleasure” but in reality make things worse. You should feel uplifted when you are finished. Going out with the girls and getting butt drunk most likely doesn’t end in you feeling uplifted when you are done. Going out to dinner with the girls and having a good laugh just might! I also try to avoid fictional novels or movies and TV shows that leave me feeling sad, lonely, afraid or dark. I think our personal lives have enough of that to deal with! Look for the good, happy, humorous or uplifting.
On a good day, I get everyone (including myself) dressed and fed by about 11:00 AM. I try to celebrate that as a success! That is our morning. I try to leave it as relaxed as possible. However, Drew is headed off to 1st grade this fall and things are going to have to change! The joy of afternoon kindergarten and getting up at 9 AM are about to be lost to my little late riser. We will move forward as we do with all new challenges. I will try a barrage of different things- sticker charts, privileges that are won or lost, and good old fashion yelling- until we get it down. I will also employ another rule.
Rule Number Four for Raising Exceptional Kids- Seek Those Who Have Gone on Before! You may not personally know anyone with exceptional kids. You may be part of a support group. All of us have parents and in-laws. All of us have neighbors. All of us have a library card. I joined the groups I did online because I loved having a HUGE pool of moms who were ready and willing to offer advice. The beauty is I could read through it, implement what I liked, ignore what I hated and move on without hurting any feelings! Those of you who have lost your parents or have had your in-laws pass away may not have them here to ask questions, but you have your memories and your husband or significant other’s memories to pool from. Get to know moms that you respect. This is easier said than done, but what better way to learn than from a master! Use your library card or bookstore to borrow or buy books that give you not only the perspective of the “professionals” but of real people living every day.

Pull Up a Seat!

Lunch is an interesting time at our house. The day really starts at lunch time. We are all up and going. Unfortunately, that is also nap time! So, I find I am terrible at running errands early in the day. Again, I try not to sweat the small stuff. (Hey, that’s the title of a really good book!) This has been a good time for actively engaging my kids. I used to be terrible at this. I am getting better. When Robby goes down for a nap that is a good time to TURN OFF THE TV (I also used to be the Queen of All Day TV Viewing) and pull out something new and interesting (and beneficial). If we are doing speech therapy practice for Drew, we include Evan. I have found children benefit from all kinds of therapy, even those not geared specifically to their exception. Even if Evan gets a chance to be the “helper” instead of the “helped” for once, it has been a good experience for him. I have also learned that a daily small dose is better than nothing at all. Perfect segway for another rule! Rule Number Five for Raising Exceptional Kids- Don’t Wait for the Time and Energy to Do It All. Do What You Can, When You Can. This rule has so many applications for so many situations. I like to apply ot to working with kids especially. Most kids’ attention spam is one minute for every year they are old. So, if you have 3 speech therapy activities you can practice and your child is 7 years old, figure on a maximum of 21 minutes of speech therapy that day. That seems really short, but it would be a HUGE accomplishment to get 21 minutes a day of speech therapy practice done at home. I have a hard time getting it in every day. I try for twice a week and then he goes once a week for an hour to the Rehab. Celebrate your successes. There are other applications of Rule Number Five. One of my favorite is house cleaning. I often go to bed (or rather to vegetate on the couch for 2 hours before going to bed) without really cleaning up dinner because I am overwhelmed at the prospect of doing it ALL. Attention K-mart shoppers! Apply Rule #5! If all you do is clear the table, scrap the dishes and stack them by the sink, at least now they are ready to go right in the dishwasher first thing in the morning and the table is clear and ready for everyone to eat breakfast at, A bunch of small things add up to one big thing. I like to think of this rule as the rule of constancy. If you are constantly doing something, you will never fall too far behind. If all you can muster today is to sit and wash and fold laundry while you watch your shows, at least you are doing something to keep it all going in the right direction. Celebrate your successes.