A look at having a special needs child

WELCOME TO HOLLAND

by

Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

This describes our family exactly.  This is not what we thought we would be doing.  It has taken alot of time and prayer and ranting, but we have finally reached the point where acceptance and even embracing this life has happened.  I don't know why God chose our family, but I pray that we do right by my daughter.

Immigration

I have been listening to President Obama's speech on immigration reform.  I was surprised that I actually agreed with alot of what he said.  But the more I have thought about it, I have got to point out a few things.
First, my ancestors were immigrants.  They came from Ireland and Scotland.  I am not sure how much you know about history, but they were not generally treated well when they arrived.  I don't have time to go into all of it, but just think back to the movie, Far and Away.  You will get the general idea.
I love the idea of the big Melting Pot.  Each culture here has left it's mark on America, and yet America is unique in it's own way.  It is like we have kept the best of each culture.
In times past, people came here because their lives in their home countries was not ideal, and they wanted to improve themselves and the opportunities of their children.  They came, they learned English, and they worked very hard and were productive members of society.
It seems that the global society has changed.  Now alot(no, not all)of today's immigrants make their first stop at the local welfare office.  As a nurse, I have personally seen this.  I am not against helping people.  But there is NO WAY our country can afford to provide for the welfare of our own people, much less ones from other countries!
Then we have the whole national security facet.  I posted a link on FB last week about Hamas setting up a camp in Mexico just south of San Diego!!  We NEED secure borders!  Our children DESERVE them!  We are the only country in the world that does not secure our borders!!  It is insane!
I don't have the answer to the problem.  But neither does Congress, and they get paid to have one!  That is the problem with letting the rules relax and letting people slide by without enforcing the laws.  You wind up with a big mess that is not going to be able to be resolved without alot of pain and suffering on someone's part.  I just pray that it does not affect me and my family.
That is my rant of the day.  Just a few thoughts.  Suas Alba!!  Erin go braugh!!  God Bless America!!!

Mother's Day

With what price we pay for the glory of motherhood.  ~Isadora Duncan


I have had a wonderful Mother's Day weekend.  My 6 year old son has really embraced the holiday this year!  He made his daddy take him shopping and made sure to get me a necklace and roses.  My daughter has autism, and I am not even sure she knew it was a holiday.  She did tell me Happy Mother's Day when prompted by her daddy.  


My kids may not always act like they love me.  They fight with each other, disobey me, and treat me like a maid most of the time, but I am the one they want when they are hurting or scared.  I guess that means something, right?  I can only pray that I do everything right enough to raise them up right!


Sunday night is here.  That means Monday is just hours away.  I really hate Mondays.  It means  house cleaning and tons of laundry.  But I am really dreading it this week.  My reign as Queen is over :(

Different, not less

Different, not less.  This is a quote by Temple Grandin.  There is a wealth of truth in it.  Parenting, especially balancing multiple kids, is hard.  Parenting with an autistic kid and a neurotypical kid is like a roller coaster ride.  There are so many emotional ups and downs.
I constantly worry that I am not doing enough for each of my kids.  I don't want to make either of them feel that I have put the other first.  C is 11---with the mentality of about 5-6.  B is 6--with the mentality of about 7-8.  It is kind of funny how they have reversed roles and he acts like the older brother.  He dotes on her like she is his own personal baby or pet!  But sometimes, you can tell that he just wants to be Mama's baby boy.
C has autism, epilepsy, ADHD, and mild CP.  Obviously, she takes up alot of my time and energy.  She needs help with so many little things that he has done on his own for for a while now.  She has to be constantly prompted to do the things she knows how to do.  Caring for her is a full-time job for anyone.  B is very independent and likes to think he knows how to do everything.  And he is usually right!  So at the end of the day, I feel utterly exhausted from dealing with her, and guilty because he has basically cared for himself all day.  I have been trying to carve out little times for me to read to him or do something else that he like to do.
Friday was a typical roller coaster day.  I had C's IEP meeting first thing.  She will be going into 5th grade next year.  She has improved some in her reading and math, but basically we are staying the course.  Not bad, but not a big breakthough either.  Just another reminder of how hard life is for her.  Then I get a call to B's school because he is not feeling well.  His teacher just bragged on him.  She says that even though he is in kindergarten, she feels that he is ready for 2nd grade.  She is going to suggest that he be placed in a multi-age class with 1st and 2nd graders next year.  I am really proud of him, but at the same time I feel guilty because I don't feel that way about C.
I guess that is just life.  I don't love one of them more, but it is a slightly different kind of love.  I love him with a fierce pride.  He has excelled at so much.  I love her with a fierce protectiveness.  I don't want anyone to hurt her or make fun of her.  And I wish I could somehow make things easier for her.  She may be different, but she NOT less.

Mommy Doubt

Have you ever wondered if you are a good Mom?  I must admit that I do it all the time.  I am constantly second-guessing myself.  Anyway, I had that experience last week.  My son had the stomach virus.  He is prone to puking for no apparent reason, so this was really no big deal.  Plus, I am a nurse, so I figured I could handle it.  Except that it wouldn't go away.  He started vomiting Sunday night.  Monday night, I asked FB friends how long it had lasted with their kids.  Most said about 24 hours.  So I figured I would give super-gag-reflex boy and extra day.  By Wednesday morning he was still throwing up and had started running a fever.  So I finally made an appointment with his doctor.  We had a late afternoon appointment, and by then he was just pitiful.  I felt like dirt!  Surely, with a nurse for a mama, he ought to be better!!  Labs came back, and he was too dry so we had to be admitted overnight for hydration.  Okay, I really felt lower than dirt!!  Surely, I could care for a kid better than that!!  I spent most of the night going over his whole illness in my head.  Turns out, I would have done everything the same.  I did all the right things.  They just didn't work this time.  Then I spent some time thanking God that we live in modern times where IV hydration is available!! It amazes me how fast a little one can dehydrate, and it amazes me even more how quickly they can perk up!!  He came home the next day.  He was puny for a few days, but as soon as he started eating good, he was back to his normal self.

Did I mention that he is my easy kid??  My daughter has autism and epilepsy, and that is a whole other can of parental doubt!!  It is a constant attempt to try and balance her anxieties in public places and trying to push her to expand her horizons!  I just have so much trouble trying to see if her meltdowns are partial panic attacks or typical tantrums!

I suppose most parents have these doubts.  Unfortunately, our kids don't come with owner manuals.  It probably weighs more on the minds of moms than dads, since we spend so much time with the kids.  I just hope and pray that I do mostly the right things.  I hope I remember to teach them all they need to know to function properly in the world, and to productive members of society.  I know she will have her limitations, but hopefully she can be semi-independent.  It is times like this, when the weight of responsibility seems almost more than I can bear.  Then I look around and realize I am not alone.  I have a great support system among my FB friends and family.  So remember--you have to keep me on the right track!!  No pressure there, huh??

Holiday Blues

Well, here we are at another school holiday.  Let me just say that I have mixed feelings about school holidays.  I enjoy the prospect of getting to sleep late.  It doesn't always happen.  My kids are on a schedule and they usually wake up close to their regular time.  But 30 minutes extra sleep is nice.  The problem is my daughter.  She has autism, and does not like change of any kind--especially in her schedule!  I can guarantee melt-downs, hearing "I hate you" more times than I can count, and my blood pressure going through the roof.  I really wish I could sleep until Wednesday morning.  I mean, we aren't even Catholic.  Why should we get off for Mardi Gras??  Oh well, I guess I will survive.  And lucky me, we have spring break starting the 28th!

Unplugged(mostly)

After my hectic Monday, I decided to have a peaceful Tuesday.  So I spent the day unplugged--mostly.  No TV, radio, or computer(except family reunion related things.)  No FB games played today.  No stressing over the idiots in D.C.  Just peace, quiet, a good book, and laundry.  I NEVER get very far from laundry!  I must say I have really enjoyed it.  I do feel more relaxed.  Of course, the kids have been home for less than an hour, so we shall see how it is at bedtime.  Anyway, maybe this will lead to a better evening.  This is always the busy time of the day for me.  Homework, supper, baths, etc....  I may do it again for the rest of the week and see how it goes.  By then, I am sure I will be having FNC and Frontierville withdrawals!  ;)