SuperMoms ALWAYS rule!

Today I finally got up the nerve to call the plastic surgeon's nurse. She is almost always more on the ball than me, so I usually don't call to bug her. It ahd been almost 2 weeks since I talked to her last and all she was waiting on was the official letter from the hematologist so that we could schedule surgery. Low and behold, I called and she had the letter! Amazing.... I got to something before she did! She had to check into what all he needed before surgery and call me back. She called about an hour ago.
Drew is scheduled for bone graft surgery and palatal fisure repair in January 22, 2007.
Hey, I just realized something! He had his soft palate surgery January 22, 2002! CRAZY! Anyway... I am just glad it is all worked out! That is a big wieght off my shoulders and we can start preparing again to get it out of the way. He will have to miss more school than I would have liked, but all in all I think it will work out just fine. It seems we have been led so far and everything has worked out for the best. It is just nice to finally be here.... AGAIN! Now, I just have to get in touch with the dentist (he and the orthodontist decided SIX of Drew's bottom teeth needed to be removed) to coordinate surgery times with them and the hematology departmetn to set up the palatlet transfusion the night before the surgery. Hmmm. I guess it never really ends anyway!

Can You Kill a SuperMom?

I think my nemesis, Crazy Medical Surprise Man, is sure trying! The latest installment in the saga that is my life is as follows.

Drew not only has VWD, but a platelet dysfunction. It is a mild one, thankfully! It only causes him problems because he has to have major surgery. However, the correction for it may kill me! Drew has to have a platelet TRANSFUSION ( yes, that is a type of blood transfusion) before every surgery! There was some good news, the medication for correcting his VWD IS EFFECTIVE for Drew! Yea! So, he will receive that before surgery too.

Drew's orthodontic expander fell out and we had to drive an hour both ways for them to tell us that they have to make a new one and he definitely has to have one put back in because with his plastic surgeon we are probably looking at January or February as the earliest opening in the surgery schedule. He can't go 2 or 3 months without an expander. So we will have to go back to the orthodontist on Nov. 26th, which is the very first available appointment they had. What a joke! They started this whole bone graft thing in June 2006! And now it looks like it will actually happen in January 2008. Does that seem wrong to anyone else?

Oh, and just in case that wasn't bad enough, they are pulling 6 of Drew's bottom teeth when he has the bone graft to optimize what little space he does have for his adult teeth to grow into. Poor, poor child. At least he only has the option to "eat" liquid for 2 months after the surgery.

I feel like I have a big chunk of Cryptonite tied around my neck. I am pushing and fighting and struggling for every little millimeter of success I get these days. It just doesn't seem right.

Von Willebrandes Disease- The Disease That Isn't a Disease!

I looks like Drew has Von Willebrande's Disease. Funny... it's not really a disease. It's more just a condition, a way of being. So, where do we go from here? We have another appointment with the hematologist on Monday. We are doing a drug trial. The drug is called DDAVP. It corrects the problem in a lot of people with Von Wille's. We have to draw blood, give the DDVAP and then draw the blood again to see if it improves his condition. If it is effective, we can use it before surgery to prevent bleeding problems. I am hoping we walk away from the hematologist on Monday with some answers. I just want to get the go ahead for surgery! We really need to get this done! At least now we have had the chance to investigate Drew's tendancy toward bleeding and hopefully fix it for this and future surgeries! I will be adding some links to info. on Von Willebrande's Disease to my long list of helpful links for those of you who want to know more!

Perfect for Families with Crazy Schedules

Try out this program, I think you'll love it!
http://www.cozi.com/
It is a family calendaring program. I just tried it and I think I am REALLY going to love it!

Prioritizing Emotions

Evan, my Aspie was so excited because I got some Signing Time videos for the boys and they came in the mail today. He immediately grabbed the ABC's volume and ran to watch it. The TV upstairs is in a bedroom that we use as a den. Right outside the door are... (TRUMPET FANFARE) the stairs. I HATE THIS! It has been a constant worry that the kids or myself will fall down the stairs sleep walking (yeah, my kids have night terrors) or rough housing, not paying attention, etc. Today was the day. Evan was running in and out of that room watching the video and then finding me to show me the sign he just learned. My 18 month old, Robby, had terrible timing and was between the door and the stairs as Evan ran out. Nothing but the grace of God saved Robby from being seriously hurt. He stopped himself on the third stair down and has no severe injuries. He cried for a little while, then he was fine.

Here's my issue. Just as I was running to save Robby (I heard them vocalize as they ran into each other and assumed the worst, so I ran out to save Robby from falling down the stairs), Evan came joyously bounding out to show me another sign. I didn't raise my voice. I just said, "Evan, Robby is hurt. You knocked him down the stairs." Evan replied, "This is how you make a 'Z' mom!" He was jumping and so excited. Recently, Evan has made real strides in noticing when he has hurt someone and saying, "I'm sorry." But today, no matter what I said, and even after I raised my voice so he could hear me over his jubilant, repetitive talking, he seemed like he just couldn't make feeling sorry a priority over his excitement. And I could tell he was really thinking about it! Even after a lot of progress in one area, he can't regulate his emotions and "prioritize" which emotion is more important at that time. I would say he has now "learned" what social cues tell you that you have hurt someone. I would say that he has "learned" that the appropriate response is, "I'm sorry." He has even gotten really good at jazzing that part up! Today, it just wouldn't come. He was far too excited about the new videos. How do you teach someone to prioritize what they feel? It seems so internal, so instinctual. Of course, I never thought he'd make a friend on his own or learn to recognize when he hurt someone, and he has done those things. It is just a struggle I hadn't thought about...

Group Discussion!

I would LOVE for this blog to become a forum for discussion between moms. I started it with the ambition of having it be a place for SuperMoms of Exceptional Kids to come and leave comments on my works (like my book). I had also hoped that you would read my posts and share yout own stories and successes with everyone else! So, if you read a post that touches a nerve, makes you cry, or gets you thinking.... LET US KNOW! Click on the "post a comment" link at the bottom of my post and comment away! I have now set it up to show all the comments when you open one specific post. That way, you can see what other moms have to say as well as add your thoughts. I would love this to become a place for moms (and all parents) to come when they find out they are having/ have a child with exceptions and be immersed with support, information, and help from not only myself, but all of you!

Excerpt from Chapter Six

*****CHAPTER NUMBER SIX- RULE NUMBER FOUR******

Seek Those Who Have Gone on Before

It’s dark and you are alone. You walk forward, knowing you can’t go back and you can’t stop. You reach the edge of an over-grown forest. You are afraid but there is something pushing you to go on, to complete what you have started. You cautiously move into the brush. You are afraid and you don’t know which way to go or what to do. By chance, you bump into a middle aged woman. She smiles and says, “First time here, huh?” You nod and wonder who this woman is. She seems to have a sense of where she is going. She can tell that you are contemplating her. She smiles again. “Yeah, I’ve been through here before. In fact, I live here. If you want, I can show to a clearing where there is good light and berries we can pick for dinner.” You wonder why she doesn’t offer to show you the way out, but finding no better alternative, you nod and follow her to the clearing. In the middle of the clearing there is a fire and several women gathered around it. You can hear people stumbling about in the dark forest and you can see women sitting off away from the group, cold and sad. You decide that the best option is to gather around the fire and enjoy the company of the other women. As the night goes on, the women start to share with you their experiences in the forest. Some are happy and seem to point to the way out of the forest. Some are sad and you can tell that they were setbacks for the women. It is now that you realize you are not leaving the forest. This forest will be your home forever. You wonder why some of the women are still wandering in the forest, going it alone, when there is warmth and friendship so near by. You wonder what makes some of the women stay in the shadows, unwilling to join the group even though they know it exists. It is here that your learning of life in the forest starts and here that you begin to learn how to flourish in this new environment that was thrust on you.
You will find that your foray into the complicated, confusing and often emotional life in the world of exceptional kids will be frightening. You will feel like you are in the dark. There is no way that you can magically know how to parent a child with exceptions. However, there are those that have gone on before you that have learned from trial and error, research, services offered, and those who went on before them. It really is a beautiful system.
There will be many things that prevent you from seeking help and advice from others. Pride is Public Offender Number ONE! Do not allow your pride to get in the way of your learning. We all instinctively seem to know what is best for out kids. But, if I asked you to make a decision critical to the success of a mission to the moon, something tells me you would rely on more than instinct. There is a beautiful blend of Mommy Gut and education that makes a SuperMom to exceptional kids. Never be too proud to seek help from others.
Access to information may be a barrier to some moms. There are so many different resources in our society these days. You have early intervention services in every state that are required by law to help you and your exceptional child once an evaluation demonstrates need. There is the internet that has countless forums, support groups and boards where you can meet and chat with other parents that are facing the same or similar challenges that you are. At two different times in my life I have used different online parent groups to gather information and find support. How useful are the experiences of others who have been where you are now! And the simple beauty of the system is that at some point, you will become that wizened one, sharing tips and advice to those who are just starting out. The system perpetuates its self.
Shyness and other personality traits may prevent you from seeking help and information from others. May I present the idea that anyone of us would walk through fire for our kids. Sometimes small and simple things seem harder than a grandiose gesture. But it is often in the small and simple things that we effect the greatest change! Start with baby steps and work up to the face to face meetings or other things that may seem more intimidating!

Karin Dent- My New Best Friend

Ah, happiness. I got a call two Wednesdays ago in the afternoon (shortly after my last post!)from our genetic counselor, Karin Dent. She starts by telling me how sorry she is and saying that she had to call back as soon as she got my message because of everything that had happened leading up to this call. We talked about Drew and how fitting the diagnosis of VCFS was. I told her we had been researching it and we felt it fit him perfectly. Then, she took down all my concerns- all the things we saw in Drew that fit the syndrome. She told me she would get me an appointment from the scheduling lady (who had already gone home) and I should be getting a call back. The next day, I get a call from Carol, yes, blacklisted Carol, how cheerfully tells me that they have an appointment for Drew on Spetember 18th. There now, Carol, WAS THAT SO HARD! A little while later, I am in contact with the plastic surgeon's nurse. By the end of the business day, I have an appointment for Drew with a hematologist on the 12th of Spetember. So, what has this taught me? Being the Dreaded, Horribly Obnoxious Mom really pays off! In all seriousness, I have learned that NO ONE will fight for your child like you will and YOU WILL HAVE TO FIGHT! But, it is worth being the scourge of the medical world if my son gets the treatment he deserves.

Mom on a Rampage!

Boy Howdy! This is in bright green because I am feeling crazy today. I have a beef with the medical profession (which I am actually a part of). It seems that it has become one giant ball of red tape! If it isn't a policy preventing you from achieving your end game, it's physician's personal preference or politics. Drew had his surgery cancelled yesterday- an hour and a half before we would have left for the hospital. See, that happy little questionnaire they call you about the day before ACTUALLY has a purpose! When they asked if Drew or a family member had bleeding problems, I answered honestly that of the last 2 major surgeries he had, there WAS bleeding issues! Then I opened my BIG DUMB RN mouth and mentioned that he was just diagnosised with a Chromosome 22q11 Deletion and that can cause thrombocytopenia (fancy word for low platelet count). And the floodgates opened.

I had to take Drew back to the Children's Hospital (we had been there that morning because the orthodontists office scheduled us incorrectly the week before) after his speech therapy at breakneck speed to make it before the outpatient lab closed. They took a sample for a complete blood count and prothrombin times (a fancy way of saying how fast your blood clots). We got the call the next morning around 8:30 AM. The results were abnormal. They were going to talk to a hematologist, but they were most likely cancelling the surgery. About 20 minutes later, another call. The hematologist feels that the abnormalities won't effect the surgery and we can go ahead. The plastic surgeon, however, will not. He wants Drew to be evaluated by the a hematologist and have further tests done to diagnose or rule out a clotting disorder before he will do the surgery. GRAAAAAAAHHHHH!!!!!!!!! It's so bitter sweet! We are grateful to know that the surgeon wants to be completely sure there are no unresolved problems before we proceed. We may have just prevented serious complications for Drew. However, I feel so GUILTY! If I have just left out that "Thrombocytopenia bit" we most likely would have gone to surgery. That's how the medical field works. A history of bleeding... okay. We'll monitor him. A diagnosis (that may or may not be related) and -WHAMO!!! - tests and cancellation. Not necessarily "right", but the way it is.

So, I call to make the appointment with a hematologist at the number the doctor gave me. They won't make the appointment. The surgeon has to call them directly and refer Drew and then they can make the appointment. The surgeon's nurse is out of the office all morning. When we finally get ahold of her, she is upset that we are thrusting this on their office when it really isn't their responsibility- Drew's diagnosising physician should do it. After 5 minutes of explaining that there is no diagnosising physician (or clotting disorder diagnosis for that matter) and that this was all discovered through the pre-op process, she lightens up a little. I also explain that the genetics department that made the 22q11 diagnosis is IMPOSSIBLE to get ahold of and more so to make an appointment before the new year, so we haven't even seen the geneticist to know if this really is an issue! She softens slightly, but will still only talk to the doctor on Thursday when he is back in the office. BAMO! I am now officially on a rampage!

I had talked to the receptionist at the genetics department. She is, for the second time, NO HELP! I explained that things had changed. She asked me what the urgency of this matter was. Then I had to repeat the WHOLE thing to her so that she "knew what to tell the doctor this was about". DEATH TO CAROL (yeah, that's one name I am mentioning- Carol's on my blacklist!). I go downstairs to look for the paper I wrote the direct line of the genetic counselor that is assigned to us on. She had been my only help in the past with genetics. It was lost and I had looked for 30+ minutes at the beginning of the month for it with no luck. I find it in less than a minute. I thank God for divine intervention and head upstairs to make the call. She is in the clinic Tuesday and Wednesday. I leave a message- an "Oh, crap, this mom is PISSED!" message. I am praying she'll call me back and help us out yet again.

And so, after a night out with my hubby (thanks to his awesome parents for driving an hour both ways to watch the boys so we can collect ourselves after our nightmarish day) and a night of sleep, I am no longer on a rampage. I am a step above despair. Why can't everyone else do their job the way it needs to be done?! I wish I could do this job of motherhood that way some days- but I don't. And these idiots are getting paid!!!

It hurts me to see Drew so upset about this. He kept telling us he was running away. Now he keeps asking when he gets to go to surgery. How do you explain the twisted politics and workings of the health care system to a six year old? We'll work this out. We always do. I think God has a purpose for all this. He has never let Drew come to harm in all the things that have happened. Maybe it was Him saving Drew. Maybe, as my mom had to remind me, it is just the cost of being alive. Crap happens- so get your shovel and start digging!

It's ALL Worth It!

This is the hardest job in the world, but doesn't this make it all worth it!

My favorite section so far- excerpt from chapter 2

WWF Bedtime

Ah, my least favorite time of day. And now, it’s time to play, ‘How Many Ways Can You Think to Get Out of Bedtime?’ Yeah, that’s about how it goes most night. Let’s see- hungry, scared, cold, hot, wet, need to pee, miss mom, miss dad, love mom, love dad, thirsty, too loud, too quiet, too light, too dark, need more toys, too many toys in my bed, not tired, too tired (yeah, I’m serious), need music, need different music, need a story, need different pajamas, too excited, forgot “something”, ummm… (that’s my favorite), needed to see what mom and dad were doing, and – well, I think that’s it. I’m tapped out of excuses. But I am sure you have heard all of those and many more. What is it about bedtime that is so detestable to little kids?! I look forward to bedtime with great anticipation every day! I suppose our Tired Index is much different than that of a child. We already discussed my many reasons for being tired and I am sure you could list many of your own. While we would love to give our kids a Tiredness Transfusion, that particular science has yet to be tapped into. SO we sojourn on with the tools we have available to us currently. I was lucky enough to stumble across the most amazing bedtime idea in a magazine one day, and it changed my life! So, this is where you will be privy to Rule Number Seven- Be Creative (And Don’t Be Afraid to Make a Fool of Yourself!).
Today, yes the very day that I sat at my computer and wrote this, Drew was displaying a rather ugly side of his temper. Drew has a hard time keeping his emotions in perspective sometimes. We use the 911 Emergency Rule- if this is something you need to call 911 for, you may scream. If not, use your “big boy voice” to convey the problem in calm, reasonable terms to the party(ies) involved. Anywho, back to today, he was shrieking. I asked what limb had just been amputated and he explained that Evan wasn’t letting him play the games in the DVD special features section. I was getting ready to go into the same old tired speech as always about how he should calmly come to a compromise with his brother in this situation. (Did I mention he had barged into the bathroom as I was just getting out of the shower? I love problem solving in the nude- helps me think.) I suddenly had this geeky flash of brilliance. I started singing this terrible “Drew Can You Do an Angry Dance?” song. (Never fear, my towel was available and employed at this point.) Drew started stomping a foot and then both feet. He started smiling and Robby started dancing along. (If you were questioning, I have ABSOLUTELY NO PRIVACY!) Robby started singing as he danced. The song went on describing Drew’s dance moves. It was a growling angry sounding song, but we all were smiling. I asked Drew if he felt less angry. He said, “Yes”. I told him that now that his angries were out because of his Angry Dance, he could go ask Evan nicely if they could agree to a compromise. They are still kids and they didn’t really compromise. Evan just continued watching the DVD. However, there was no screaming, shrieking, pushing, hitting, kicking, fighting or other violence. Be creative. Parenting isn’t a concrete set of rules (except for mine, of course). Think around problems. Take your kids off guard. My greatest successes in parenting came when I took my kids off guard in a positive way. Kids learn to block out the negative. Use your talents to get their attention before it gets ugly. Use your talents to teach them how to cope positively with negative things. Be creative and pass it on to your kids.

Just Clumsy?

Evan fell OFF MY LAP and broke his arm. Try explaining that to the Nurse Practitioner at the Urgent Care. She looked at me like I had three eyes! Children with Asperger Syndrome are clumsy by nature. Go figure! He has no judgement about things like pulling his arms inside his shirt and then deliberately falling off Mom's lap.

Chromosome 22q11.2 Deletion

DiGeorge Syndrome, Velocraniofacial Syndrome (VCFS)- so many names, so little time. That's why a lot of doctors have started simply calling it what it is, Chromosome 22q11 Deletion. A small piece of the long arm of the 22 chromosome is missing (deleted). So, why do I care, do you ask? Is it because it is the fourth most common syndrome and 1 in 700 kids are born with it? Is it because a lot of kids with it don't know they have the deletion but are sick all the time and no one knows why? Those are good reasons. The best reason is that my oldest son, Drew was just diagnosed with VCFS. Drew has a 22q11.2 deletion. Check my "Websites You May Find Helpful" section for links to more info. on VCFS.

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.

SuperMom?

Mothers of special needs kids take the job of mothering to a new height. While I was partly being funny with my blog title (you'll get to know my need to use humor all the time as a BIG part of my personality), I also realized that every mom that has a special needs kid(s) and hangs in there every day trying to make a positive difference is most definitely a SUPERMOM!

What's a "2E Kid"?

A 2E kid is a "twice exceptional kid". This refers to the fact that they have a special need (exception #1) and they are gifted (exception #2). While I see my two oldest boys as 2E kids, Evan fits the definition to a tee! He tested in the 94th percentile on his cognitive testing, but only in the 2nd percentile in his social and behavioral testing and has also been rated "very highly probably Asperger Syndrome" by a screening tool.

My 1E kid!

Thus far, he is only 16 months old, Robby has yet to show any signs of having a special need. Who would have thought that would alienate you in a family!!! He is, however, very advanced for his age! I have even had professionals that we were consulting for Drew and Evan coment on his advanced fine and gross motor skills and verbal skills.

Writing a book

Above: Drew and Evan, my two Twice Exceptional (2E) kids!

A very dear friend from high school suggested that I write a book about how I have choosen to parent my two special needs yet gifted children with humor and with discipline like I would any other "normal" child. At first I chortled at the thought. Who would want to buy that? Than, I thought I would give it a try- at least for my own benefit. And if I can help other moms like me along the way.... all the better!

Excerpt of Chapter One

* The Pain of Discovery *

Drew was born March 25, 2001. He was only 5 lbs. 3 oz. even though I was almost 38 weeks when I had him. We discovered after delivery that the placenta was unusually small- dangerously small. His umbilical cord was so short that I couldn’t put him on my stomach after delivery. No TLC’s “The Baby Story” moment for me. I had to hold him dangling angrily between my legs. Boy, that kid couldn’t get a break from day one!
We found out on our detailed ultra sound at 22 or so weeks that Drew had multiple birth defects. Apparently, our ultrasound tech was near getting her ultrasound sainthood, because she even noticed Drew’s heart defect. All fetuses have a hole between the top two chambers of their heart until just before or shortly after birth. She amazingly noticed that the hole in Drew’s heart was different than “normal” (a word I have come to see in a different light).
When I say ‘we found out’ I really mean ‘I found out’. That’s right- your worst nightmare. I was alone. This was the first visit that my husband Ryan couldn’t come to without rearranging his work schedule. I told him not to worry about it . (How brave am I?) You see, we had had an ultrasound by the Certified Nurse Midwife every appointment so far and she hadn’t seen anything that worried her. I was confident that everything was going to be “normal” (there’s that word again). It was eerie, really. I was lying there, watching the ultrasound on the monitor. I was a nurse, myself, but with little experience in ultrasounds (that was soon to change). I started to feel very light-headed. This is not uncommon for pregnant women lying on their back. It had never happened to me before. I remember feeling a sudden attack of panic, almost. I should have known. I think the ultrasound tech took that moment to tactfully do what she knew she had to do. She left to get me some juice and some one to take my vital signs. She returned with a doctor. My midwife had that day off. I really should have known that something was going to happen. They spoke cryptically for a couple seconds and then after a few utterances of “Oh, I see it,” and “Okay, I agree with you,” the doctor told me that my baby had a cleft lip and most likely a cleft palate and that he probably had a heart defect too. Everything from here turns into what I could later term as a “Matrix moment”. It seemed like sounds were almost distorted and that people were moving in irregular fashion. I remember sitting in a room I had never been in before- I think it was his office- as they got me an appointment with the perinatologist. I navigated my way downstairs and out the door. As soon as I hit the frigid December air, my insides crumpled together and I started bawling! I couldn’t hold it in anymore. I remember being so shocked by the ferocity and the duration of my tears. ‘Pull it together,’ I kept thinking. There was just one problem… I couldn’t.
I knew Ryan couldn’t take phone calls at work. We had only been married for seven months, so my in-laws weren’t even on my “Help Radar” in times of extreme trauma when I wasn’t thinking clearly. I also knew that my family had started gathering for Christmas at my parents’ house and someone had to be there. I called my parents’ house on my cell phone and my older sister answered. She was pregnant with her second child. I don’t know if this made it harder for me or not, or if it was just the familiar voice, but I started crying with increased intensity. Caller ID had never been more valuable. I am not sure what my sister would have thought of the psycho on the other end of the phone call had she not known it was me. She asked me if something was wrong with the baby (very astute) and I made some grunt of acknowledgement, I finally was able to utter some kind of explanation one word at a time. After speaking to my mom, I drove myself home (in peril of death the entire drive as I was crying so hard I could hardly see, let alone think or reason!). I dashed to the computer and immediately used Instant Messenger to tell my husband what had happened. He came home straightway and we pack and left immediately for my parents’ house (our original plan was to leave the next night).

*And then there’s… *

Feedings were a nightmare. I was using a breast pump to get breast milk and then we would feed that to him. That lasted for seven and a half months before I started losing my milk supply. Between working full time and medical appointments and all the care Drew needed- when did I think I had time to pump?! Drew had tube feedings for about 5 weeks. At that time I was going back to work and Ryan was really uncomfortable with doing the tube feedings. Drew had gotten to the point where he could take an ounce and a half in about 20 minutes with his special bottle, so we let the tube feedings go. In hindsight, that was probably a mistake. However, he was soon taking two ounces in 20-30 minutes and slowly increasing his feedings to a point where we felt really comfortable doing only bottle feedings. Drew woke up three times at night for feedings as he could only take two or three ounces at a time. Drew was still waking up at least once a night for a feeding at 19 months. I know he was hungry because I could feel his empty little stomach rumbling under my fingers when I’d get him out of bed!
Ear infections are common in kids with cleft palates. There is a medical explanation as to why, but that is not the point of this book and I am sure most of you couldn’t care less! Drew had tubes put in his ears when he was 3 months old at his first surgery. We had anticipated his first surgery would be cleft related, but Drew wanted to do things the hard way! At 6 weeks of age (about 3 days after I went back to work) Drew developed bilateral inguinal hernias. They had to be repaired first. Sigh. At least we could get the tubes in his ears at the same time before he started getting ear infections- HA! The boy had his first ear infection AFTER we put the tubes in! The ENT did say that there was a lot of thick fluid behind his ear drums and that can make it difficult for the child to hear correctly, so I always try to console myself that way. Drew had more ear infections than I can count after that first one. His pediatrician finally decided to culture the drainage to see what we were fighting and why it wasn’t going away. The results came back as staph. Those of you who are non-medical people, think gangrene. We cultured it a short time later and it came back strep. I had the joy of cleaning out the copious drainage one day only to smell bread raising. I wasn’t making bread. We cultured it again- yeast. The joys of motherhood are magnified tenfold with special needs kids! I want to meet the mother who can say she has put Lotramin in her child’s ears. I have!
Early Intervention services are a gift and a curse (I am taking that from one of my favorite TV shows, ‘Monk’). They are provided by the government in most cases. Don’t we all love and cherish the government? I was so pleased to be getting help for Drew. They sent out a speech professional to help him with speech therapy and an early intervention specialist to help with the developmental delays that had been identified through assessment. He also attended a playgroup. How fabulous is that?! As our first child, he really had no other children to interact with and learn from. Shortly after we started using the services, the government decided that families should pay for these services based on their ability to pay. Just like the government! Don’t they realize that most families with special needs kids don’t have “extra” income floating around? And those that do should be able to focus it on private services. I have mixed feelings about this, but in general, I feel that families with special needs kids DO NOT GET A BREAK! Early Intervention could be one place that we could give it to them!
Surgery- this is something I am sure many parents face at least once in their parenting career. We have done surgery 12 times so far with Drew. At the time that I wrote this book, Drew was 6 years old. Most of his surgeries went as we had expected. His first surgery, he was EXTREMEMLY sleepy. We spent almost 6 hours in post-op trying to get him to take two ounces. He wouldn’t wake up! His second surgery, in speaking to the anesthesiologist, we decided that it was the narcotics that did this. So, they went light on the narcotics. They give kids narcotics after surgery not only to manage pain, but to manage a less known side effect. Children respond negatively to anesthesia. I like to think of it as waking the sleeping bear by putting the wakeful child to sleep. Drew came out of his second surgery screaming! They gave him a half dose of narcotics and he calmed down. There were only two other times that surgery didn’t end up as we expected. The first was the tonsillectomy. Eight days after the surgery Drew’s scabs fell off and he started to hemorrhage. Let’s all think back to what I said about Drew in the very first paragraph. This kid can’t get a break! The only reason I knew he was hemorrhaging is because he had a small amount of blood around one corner of his lip. Ryan asked me if he had fallen as we were getting in the van to go to Wal-Mart to get diapers. We called the ENT resident who told us to come to the ER at the children’s hospital where the procedure was done and to tell them when we got there to page him. In a blur of activity after that, they determined that Drew was still actively hemorrhaging and needed to have emergency surgery to stop the bleeding. I will relate more about this experience in a later chapter. We had to stay the night to make sure the bleeding stopped (just a protocol as they hadn’t had a patient need to go BACK into surgery in their experience). By 4 AM I could see fresh blood on the pillow. By 7 AM Drew was back in emergency surgery. The other surgery that didn’t go as planned was his hard palate repair. This happened 3 months after his tonsillectomy. It was supposed to take an hour and a half. After three and a half hours, we were worried. The surgeon walked into the waiting room as I was standing to ask the receptionist what was going on. The surgeon told us that the soft palate repair had come undone, so he had to re-repair that. To make matters worse, Drew was bleeding so heavily during the procedure they were spending all their time cauterizing and not repairing. So, they stopped and did lab work and determined that his clotting times were increased and his blood count was low, but that they could continue. They were able to finish without too much trouble. Drew was lethargic for months after that surgery!

*Twice the Fun*

Evan was born December 14, 2003. He was three weeks early, but weighed 7 lbs. 12 oz. He was vigorous and healthy! He had all his fingers and toes and… face. We were so happy. We felt we had really taken a chance in having another baby. Every couple on the planet has approximately 1 in 750 chance if having a child with a cleft. After having a previous cleft child, your risk is more like 3 in 100. Ryan was reasonably scared. I thought because we had no family history of birth defects it was probably an environmental thing and we were relatively safe. And here was Evan- our miracle after a storm. Drew had already had 5 surgeries by the time Evan was born. We were ready for a reprieve and Drew was ready for a sibling!
Evan was a smiley, happy baby. He grew quickly, reaching 18 lbs. before he was four months old. He had all his vaccinations on time. He babbled and cooed. Most parents take this for granted. As the parents of a child that had struggled to make any recognizable sound, we reveled in any sound Evan made that sounded like a “normal” baby (yes, still with the quotes). Evan had some respiratory issues that worried me a bit. I have a brother that had severe asthma and Ryan had a brother that struggled with asthma as a child. I knew that we could be facing asthma in Evan’s future.
Around the time Evan was 8 or 9 months old a whirlwind of activity started. Evan was introduced to peanut butter by his helpful older brother and he had what appeared to be an allergic reaction. I told Ryan it was IMPERATIVE that we keep Evan away from any and all forms of peanut and peanut exposed foods. A month later, Ryan called me from his mom’s house (I was scheduled to work and then put on-call after Ryan and the boys had already left for Nana’s house) and told me that Evan had swiped someone’s PBJ and taken a bite. The result was hives and swelling. They had given him Benadryl, and the hives were going away. The coughing spells were getting worse. I knew we were dealing with a child who needed medical intervention. His pediatrician and they put him on Xopenx, a medicine that opens the bronchiols. We were using it so frequently I called my parents and got the name of an asthma specialist. It was weeks before they could get me in. We would wait the two weeks. At this same time, but completely unrelated, Evan stopped babbling. I didn’t think much about it until 10 months later. We were dealing with his physical health, possibly life threatening stuff. I’m not saying I would have put more stock in it if he had been physically healthy, but we were justifiably distracted with a higher priority. Evan was diagnosed with asthma and considered “severely allergic” at 14 months. We started carrying an EpiPen (thank heavens he was a chunky kid- most 14 month olds aren’t big enough for the EpiPen Jr.). We bought a nebulizer. I pitied myself a little bit that I had two kids with special needs. Ha! I should have saved it for later!

Circle, Circle, Circle, Circle…

At 18 months, Evan was still completely non-verbal. We suspected that it had something to do with the fact that his older brother had unintelligible speech. His pediatrician recommended… you guessed it, early intervention. They tested Evan and he was developmentally delayed in both expressive and receptive speech. Again, EI is a blessing and a curse- they sent out an early intervention specialist but not a speech professional. I was “okay” with it because I felt I had other resources. I had talked to Drew’s private speech therapist and we had scheduled an appointment for her to assess Evan after his 2nd birthday if he was still not talking. We started to notice some other things about Evan. He didn’t really like to play with other kids. He often didn’t respond to his name and I wondered if he had hearing problems ( a quick trip to an audiologist showed that he had better than average hearing for a 2 year old). Evan rarely made eye contact, even with people he knew. He didn’t really point to things in books or around him. He occasionally walked on his toes. It was at this point I though life handed me a big fat lemon! What actually happened was I was getting ready to make a cool pitcher of lemonade. Evan’s early intervention specialist got promoted. So, we got a new specialist. She seemed so cold and matter of fact. I thought I hated her. In reality, she was about to give me the most important training I was ever going to get. She was about to teach me how to deal with my Autistic child.
When Evan was about 29 months old he started to notice circles. He would trace around and around the circle. I noticed his interest and told him it was a circle. Boy howdy! I didn’t know what I was starting! From then on, every time Evan found a circle, he would trace around it and say (yes, say!) “Circle, circle, circle,” over and over until someone redirected him. We were all just excited that he was speaking. (Okay, I WAS a little dense- or maybe hopeful. I still didn’t fully accept and understand what was going on). Shortly after that, I was holding Evan’s shoes. He looked up at them, and said, “shoes.” I was ecstatic! He had referenced an object and correctly labeled it! I tried to recreate it for Ryan when he got home, but to no avail. Then, later that night, Evan was walking around reciting the word ‘shoes’ for no one in particular and definitely not to identify shoes. It was a fascinating new sound, but he did not identify that it was the label for his Elmo sneakers!
About a month later, we were at speech therapy for Drew. I would take Evan with me and he would play in the waiting room while Drew did his one hour session with his speech pathologist. Maybe Evan was learning by diffusion (look it up, osmosis is a process that requires water) but that day something extraordinary happened. Drew, being particularly rambunctious that day, headed out of the door into the hall. We could see Drew in the hall because the Pediatric Rehab waiting room had a series of large windows looking into the hall. Evan looked up to me and said- plain as day- “Mom, Drew went outside.” I was flabbergasted. I couldn’t believe it. Not only was he talking, but he was using four word sentences!