30 Ways to KNOW you have an SPD kiddo!

You have seen those “You know you are a redneck when” or “You know you are from Yakima when” lists, so here is mine:


You know you have an SPD kiddo when:

1. You judge every playground by the number of swings or spinning equipment it has.
   
2. You hear the Red Robin crew begin to clap and you immediately cover your child’s ears to avoid the Happy Birthday song.
   
3. You have memorized where the automatic flushing toilets are in your whole town.
   
4. You can, all by yourself, cover the automatic flushing mechanism on a toilet, help your child to use the bathroom , do a “clean butt” check, and yell, “1-2-3!” all without your child being “in” the stall when the flush goes off.
   
5. You can think of 5 ways to use a can of soup, and none of them require opening it.
   
6. You hear about a new “spa” that allows you unlimited time to use their showers, pools and hot tubs and the first thing you think is, “My son would love that!”
   
7. You have a trampoline in your main living area (probably not far from the TV or the kitchen).
   
8. You have objects that are OK for “chewing” and are not edible.
   
9. You have visual aids so your child can get himself ready for school independently.
   
10. You can explain the difference between an IEP and a 504 in one sentence.
    
11. Your discussions with your doctor require a better understanding of acronyms than doing your own taxes.
    
12. You wonder if you can write off a swing in your playroom as a “medical expense.”
    
13. You haven’t been on vacation...pretty much ever.
    
14. You consider reading the Support Group List Serve an “afternoon out with friends.”
    
15. You have turned down more invites for parties than you attended during YOUR ENTIRE college career.
    
16. You spend equal amounts of time convincing others that your child is “not” OK as you do that he “is” OK.
    
17. Before your child was one year old, you had your first doctor ignore your concerns.
    
18. You can, from memory, give Handwriting Without Tears verbal cues without hesitation.
    
19. You have a pair of earphones that were so expensive; your husband can’t believe you let your child use them.
    
20. You carry gum, bubbles, protein snack and ear plugs in your purse; but no lipstick, powder or mirror.
    
21. You have looked into buying MULTIPLE of your child’s “favorite” toy so that if need be, you could secretly replace it.
    
22. You have heard more than one person insist that you have to spank more.
    
23. You have had at least one family member stop inviting you over to their house because they think your child is a bad influence on theirs.
    
24. You can give a minimum of 3 things OTHER than a chair that a child can use to sit on.
    
25. You have given up the idea that your child will *sit* through an entire meal.
    
26. You have seen so many doctors, it would make most women’s head spin, but for you, you can recite them, by name, and date, and what they did or did not do for your child without hesitation.
    
27. You remember the day you found support.
    
28. You remember her name, too.
    
29. You pass your new found "support" on to everyone you can think of.
    
30. You wouldn’t trade being the mom of your kid for any other “typical” kid in the world.
    

For Those Of Us In Holland

I thought I would share this with all of you--and I must say that no matter what, I love Holland; I am better for what it has taught me and even luckier for those who have traveled there with me.

I take it directly from a post on a list serve of mine:

Emily Kingsley wrote this in 1987 to describe her personal feelings on having a child with a disability, a lot of people feel this but don't know how to express it, I have seen many people ask for it in various stages of my life, and come across it in a book and thought Id post it here for future reference.

Welcome to Holland-

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum. The Michelangelo. David. The gondolas in Venice. You may learn some handy phrases in Italian. Its 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 flight plans. 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 guidebooks. 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 have 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 go to Italy, you may never be free to enjoy the very special, the very lovely things....about Holland.

Emily Perl Kingsley, 1987

Resiliency

Yesterday on the way to a yard sale with my family, we stopped at Bank of America to get some cash and turned around in the gas station parking lot. As we drove through the parking lot, there was this woman, carrying a car seat across the parking lot with a preschooler in tow; they were heading towards a man standing behind his truck. The man bent down, lit up and the boy went running to him. They were meeting for his visitation.

I don't know what exactly struck me about this, but it really got my mind thinking about how hard it is to keep a family together. Not that marriage for anyone is easy, but for families with special needs children the chaos and stress level can be so high, it is a wonder that anyone stays married. Yet, it might be even more paramount that families with young special needs kids do stay married--those adults need the support of their spouse more so perhaps than average couples.

I had friends visit last night, great friends actually, and she is recently engaged for the first time at 42. I couldn't be happier for her. Her fiance has been married before, and I read recently that the divorce rate for second marriages is like 83%--about the same rate for families with special needs children. 83%-that is amazingly high.

With the visitation scene fresh in my mind, and my friend entering into a new marriage (she has a young son as well) I began thinking about what it really takes to maintain a relationship--what it takes to beat the odds. How can my family maintain resiliency?

James May has a great lecture on the subject here in our area, but even after that talk (two years ago) my husband and I didn't feel like we got any great tips. We actually left that meeting feeling thankful that our "special needs" kiddo wasn't worse. Horrible, I know, but being in a room full of families who had kids that needed physical assistance for everything from eating to walking made us feel thankful to have the problems we did. I definitely do not have the ability to lecture on resiliency, and I by no means am an expert on the subject. However, I do know that there are a few things that help me, and so for all of you moms out there that feel like you are about to become a statistic, here are my two cents:

Humor--James May suggested this too, and most of you know me well enough to know that this is about all I have most days. My husband and I genuinely make each other laugh. That attracted me to him to begin with and sure helps still. Also, there are many days when the yelling, screaming, and feeling completely useless in helping our son that we have to step backwards and simply laugh. How in god's green earth did we get here? Three boys, chaos, a dog, a mortgage, appointments....It adds up quickly--and sometimes I still feel like that 21 year old girl who was barely making rent. LOL

Support--I can't stress this one enough. I am so incredibly lucky to have women on my side, women who have kids like mine, in all of the good and bad ways. Those women hold me up emotionally when my legs are too weak to stand. Find an emotional support system--those women are NOT necessarily your best buds, they are not necessarily your social group, they ARE the only people in the world who "get it". Online or on the phone find someone you can reach out to when your life overwhelms you.

Babysitter--Find someone who can handle your kids. Anyone. A friend, a family member, a teacher, neighbor, ANYONE. Then leave them. :) You MUST have time away from the chaos, even when the chaos is at its worst and you think that the world might literally stop spinning if you took any time for yourself. It might start that you go to visit one of those women on your "support" list--another family that no matter how bad your kid is, won't care. Will empathize, not criticize, and will not under any circumstances think that you should simply be harsher or spank more.

That is my three step program. I think all good programs have 12 steps, but that seems like a lot to remember, and I know you are reading this between your child's meltdowns or OT appointments and don't have the time to read nine more steps. LOL Oh, and I want you to actually use these tips. Start practicing these today; it will give your marriage a fighting chance and I know you are *great* at fighting for your family--you have been honing those skills while battling the insurance company, the neurologist, the school district and god knows how many others (in laws, neighbors, grocery store starers)--start fighting for your marraige too!

I hope you are all having a great weekend. I am going to watch some football with my hubby, shower and head to a play with my girlfriend Shellie; Spring Awakening. Seems like an odd one for the cold and wet fall here in Seattle, but time away is really all that matters.

H