Coping with Parenting Multiple Children with Multiple Disabilities

Using Humor and Understanding???

The first thing people always ask us, is how do you do it? Trust me, some days we wonder that ourselves! Both of us never claim to be experts, we live and learn everyday, one day at a time! We make alot of mistakes, loose our tempers, raise our voices, expect to much... Then we fall exhausted at the end of the day and beat ourselves up for not doing a better job and start over again the next day, just like everybody else, with the best of intentions to do better. Some days we do, some days we don't. There are no definate answers, solutions or fixes available, just trying to get through the day sometimes is enough! We wanted to share our experiences with others to let them know that they are not alone and there are other families out there like there's, struggling, coping, etc. We will give you all of our knowledge and experience, somethings have worked very well, somethings, not so well! We hope that you can use them and that you have success. You may also be able to share with us somethings that have worked for you too!!

So above all don't be hard on yourself, find things to laugh about, see the humor within the chaos, be partners, you have to work together, remember that if something doesn't work, you can try something else tomorrow, and above all, remember that you are only human and you are your own worst enemy!!! Your children love you for who you are too, and really, they don't expect as much out of you as you do to yourself, they will take what you give them if what you give them is love, understanding, necessities and time. Pretty simple!!!

With that in mind, we will share some of the things that have happened to us or that we have gone through that we have found numerous, humiliating and down right hilarious! Kids are amazing and even though they have a disability, they still have the radar to embarrass you, and make you laugh!!!!

I will include one of the E-mails I sent to our friends, families and the kids teachers Assistants during our trip to Sacramento in May of 2005, they were so popular that they all encouraged me to write a book, I have now included all of them in our book!!

This was sent after flights from hell, at the very beginning of our trip to Sacramento to the MIND Institute to see Dr. Randi Hagerman and her associates. We traveled with our 3 children, my parents (Lori) and my Grandparents, as we have traced FXS back 3 generations in our family. Enjoy!

Sent: Sunday, May 15, 2005 12:15 PM

Subject: IF WE EVER DO THIS AGAIN!!!!!

Hello all,

Just bear in mind that this is being written by a half crazed, sleep deprived, discruntled airline traveler that has decided it will be a cold day you know where if we ever do this again!!!

The trip started out decent enough, the way to the airport was a trip you would expect to see in a scene from a Die-Hard movie with an insane cab driver that almost put us in the ditch 3 times and seemed to be nodding off at the wheel! With my Grandmother in the front seat trying to keep his attention focused and on the road, giving him polite driving tips when really she can not see two feet in front of her anymore, bless her heart! But we made it to the airport in one piece, we should have known it would get better from there!

The kids were really good going through customs, the only thing that they picked on was my purse a bit but all was well. They waited patiently for the plane to come and got on with no problems at all and kept all the passangers alive with squeals of delight! The were supposed to board us first but in true customer service oriented fashion, took the 1st class passangers first! The flight went smooth, THEN WE GOT TO SEATTLE, WHICH BY THE WAY IS MY LEAST FAVORITE AIRPORT NOW, THE PEOPLE ARE INSANE IN THAT PLACE!!!!

Zach wanted to take a cab from Seattle to California, as he didn't like his ears plugged on the decent. Taz went pure evil and proceed to scream and cry and swear, etc., at anyone in her path because her ears hurt so bad. We should have listened to Zach! We were laid over for which was supposed to be 1 AND1/2 hours. We were told we could board after the initial hour+ wait and Zach was freaking out so bad and had psyched himself out to be the first one on the plane. People were swearing at us, telling us to spank him, etc. The flight attendants would not give us any reassurance that we were going to get on first, as Grandma needed assistance as well, she was having a hard time walking by this point. We were all anxious to get on the flight get to our hotel, find food that was decent and didn't cost a fortune, Then the call came that every weary traveler with 3 small children and 6 adults that were exhausted dreads to hear. UNFORTUNATELY, YOUR FLIGHT WILL BE DELAYED DUE TO MECHANICAL DIFFICULTIES, WE WILL HAVE IT FIXED AND READY TO GO IN AND HOUR!!!! @#$!!!

We were delayed 3 more hours, almost escorted out of the airport due to Zach's behavior, we had other passangers cursing us, complaining about the noise, ready to discipline our "horrible children" themselves. My mother at this point made it her mission to become our PR agent and go and inform the whole area we were in that our children were disabled and having difficulty adjusting to this change and break in their routine. She was met with lots of hostility and a few kind people just trying to get the hell away from us!

We finally got on the flight and arrived in Sacramento, cranky tired and not caring anymore who stared or swore at us! Got the luggage and made our way out to the bus to take us to the rental cars. Just when you thought it was over.... all hell broke loose!!!!

We finally got a bus that could fit us all and our luggage, got to the car rental place, dad and I went in to get the cars and left mom and Byron in charge of the kids. Byron had to leave and sign off on our vehicle, mom was chasing the boys and Poor grandma was left to watch Taz who at some point escaped and called 911, yes you read it right, 911 and informed the sacramento police that her brother was trying to run away.

We go the rental cars and were loading them and anticipating our next move, I was yelling at the kids like a lunatic, as they were destroying the rental car that I could never afford, complete with leather interior a navigational system, need I go on??? and Sacramento's finest show up to question us and the kids about the 911 call. It went well, and apparently, they could track our movements from the airport, thanks to Taz as she was completely freaking out and they started to watch us from there!!! NICE!!!!!! I thought my dad who had more than enough by that point was going to turn around and fly back home, even if it was on my broom!

We finally got to our hotel, got into our rooms and went on a trip to find food, got lost, found McDonalds, ate at 10pm our time and all settled in for bed.

Today, we are starting out better, but if I don't sign off right now, I will be killed!!!! Take care, all of you be thankful you are in your own beds tonight, oh and by the way, if you happen to see the TV show Cops, watch it, as I am sure we will be making an appearance after yesterday!!!! Take care!!!

Lori, Byron, and our?? kids

If you want more, you will have to wait for now, trust me they are worth it, we even get the same cab driver on our way home!!!!! Purchase the book, which will make a donation to Fragile X Research, I promise, they got better from here!!!

Other humorous aspects of our days have been the swearing that is a consistant element of our days. Zach, who is polished in curse, can use it very appropriately like the time he stepped in something outside, looks at me and goes "awe @#$%, dam dog!" He also gives me the finger from the bus window in the morning or when he is angry, only it is the index finger I get and a big grin as he thinks he is being defiant. We haven't bothered to correct that yet!!!

Connor, can fart on command and does so in the most inappropriate settings, and laughs. Like when I am bent over in the grocery store getting something off the shelf and then he says, "Mommy, you stink!!!" and bursts out laughing and blaming me!!!

Taz is going to be the next big thing in Hollywood as her ability to act is amazing, she can be sweet and innocent one minute and down right evil the next. There is always an out crying for Drama Queens, right??? She could also star in horror movies as she has the role in the exorcist down pat, I would have to convince her to eat pea soup, that might be difficult, ah but that's what special effects were created for!!!! She also, is well versed in the art of curse and uses it well, it has gotten us out of long lines in stores!!!!!

We do not condone their inappropriate behavior, or reward it, we hold them accountable for it. But when they are in bed and the day is over, and they are asleep, we sit back and have a good laugh at most of it otherwise we would surely cry!!!!

 Send us some of your funny stories and we would love to read them and add a page to our website with humor!!!

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