Tag Archives: humor

5 Ways That Motherhood Has Changed Me

8 Feb

1. I can’t stand silence.

I used to revel in the silence. Now if no one is crying, giggling, arguing, singing or asking me a thousand questions I feel like the apocalypse may have happened and I was left behind.
I also can’t stand it because I know what it means. . .someone is coloring on the walls, making hair and dresses out of the toilet paper, or gluing my new earrings to paper.

2. I cook

No, I don’t cook well. But I do cook. Before I had kids cooking consisted of pouring a bowl of cereal and adding milk. Now I am like a mad scientist. You can find me in the kitchen whipping up concoctions, smoke billowing from burning pots and pans and children begging me for McDonalds. (They just haven’t developed their pallets yet to appreciate my cooking.)

3. Drool no longer bothers me.

I seriously had a major hang up about drool when I was pregnant with my first child. Thick, drippy, smelly, liquid constantly hanging from a baby’s mouth was one of my phobias. Gross. I never thought I’d get used to it. Now I don’t even think about wiping my kid’s mouths with my shirt, pants, hands, arm, or the nearest toy or baby blanket if it suits me. Sometimes I’m sneaky and wipe one of my kid’s mouths on the back of my other kid’s shirt. Excellent reason to have multiple children. You never run out of clothing surfaces to wipe faces on.

4. I don’t sleep.

Ok I do sleep, but I definitely don’t sleep like I used to. I used to close my eyes and be completely comatose until my alarm went off the next morning. Now I am on night time mommy watch 24/7. I hear a cough, sneeze, or fart in the night and I am suddenly the world’s fastest, sneakiest spy. I creep into their room, find out which one made the sound, decipher if it needs further investigation and then escape like Houdini before I am spotted by the enemy.

5. I think yoga pants and pajamas should be a strictly enforced dress code for stay at home moms.

Before I had kids I wouldn’t have been caught dead without my hair brushed, make up on and a properly thought out wardrobe. Now I think. . .Why do I have to get dressed to go to the grocery store? Why do I need to put on my “good jeans” (you know. . .the ones that don’t make my ass look like a deflated saggy pillow) to go sit in a circle with 15 other toddlers, singing The Wheels on the bus, coloring happy faces and trying to keep my kid from gluing the picture to the table? No my good jeans are reserved for the times when even my pallet is too underdeveloped to appreciate my cooking and we need to go to out to eat. I mean really out to eat. Like going to McDonalds and forgoing the drive through to sit in the exceptionally fun play room. I mean Playscape. . .yes, my jeans must be worn to the Playscape. If for no other reason than to provide a thicker barrier between my knees and the pee soaked tunnels my kids ask me to crawl through.

Emergency items are required!

7 Feb

“Having a child is liking getting a tattoo…on your face. You better be committed.” ~ Eat Pray Love screenplay

When Oli was born I got a crash course in packing for a child with disabilities. And it wasn’t only the trips to LA that provided me with my learning experience. We still lived an hour away from Las Vegas at that time, which is where all of her regular doctors and specialists were located.

I have learned over the years that the amount of stuff Oli has to have to go anywhere has not decreased in proportion to her age as it usually does with children. If anything I think it has actually increased.

When she was a little baby I had to make sure to remember to pack diapers, bottles, the mommy torture device, er… I mean breast pump, and a couple changes of clothes for her AND me. She had really bad reflux and was prone to soaking both her and I with sour partially digested milk. On that note, I also had to remember to bring lots of wet wipes and never forget the bulb syringe. While driving I had to keep a close eye on her in the review mirror in case she had a particularly bad bout of reflux. The milk, and later her baby food, would come up and out her nose in which case I had to immediately pull over and perform the very precarious operation of baby nose sucking.

As an older baby she required diapers, wipes, food, clothes, toys and a good song on the radio.

As a toddler these same items were required and we added in a few extra things. The toys we had to bring got more interesting and had to be MacGyvered into our car and hung in a way that she could always find them and know where they were. Young blind children have no concept of item permanency. When a blind baby drops something it just magically disappears into space. Once it’s out of touch with their little hands, in their minds, it’s gone. Poof!

The binky. It was a major disaster if I forgot to bring the binky. I still find myself in a moment of panic when I realize that we are out and I did not bring the one item Oli needs to soothe herself. No binky could potentially ruin a car trip, a nice dinner out, a shopping trip, or any other function that requires my girl to sit nicely for longer than a few minutes.

Going out or on a road trip now forces me to do a medication check list. Has she had her seizure medication? Check. Her drooling medication? Check. Emergency seizure medication in the bag? Check. Prilosec been given for her reflux? Check. Are we staying over night? Then we need more seizure medication, more drooling medication, more Prilosec, and THE MOST IMPORTANT MEDICATION…..

the sleeping medicine. I absolutely CANNOT forget the sleeping medicine if we ever stay over night somewhere. This would be very very bad. Trust me.

She also needs her little potty seat. Even though she’s not fully potty trained I’ve been taking her to the bathroom since she was two. And my girl absolutely insists that I take her poop on the potty.

She needs little toys that I can stick in her bag. Things to entertain her in restaurants, waiting rooms, or in the grocery cart. Like dolls with yarn hair or small blankets that she can flap around. She loves this.

Snacks! My girl absolutely loses her mind when she is hungry! I mean sometimes I think she has been possessed by a demon. Her head starts spinning, she starts snarling and clawing. I’m thinking what is wrong with this child. People in close proximity to her are backing up and grabbing the cross hanging around their neck. And then I realize she hasn’t had a snack in two hours. I only have a two hour window between meals and snacks and then Oli apparently thinks she is starving to death and is convinced that I will never feed her again. Yes, snacks are very important.

Drinks. She has only a slightly more docile reaction to feeling thirsty.

Boogie wipes are also a necessity. She always has a runny nose and they are great for cleaning the bit of maka pia pia (eye sand) from the corner of her eye.

The stroller in case she comes down with a case of floppy spaghetti legs and refuses to walk.

Q-tips. Oh my gosh, I almost forgot to write about Q-tips. Not for her ears either. These are for her eyes. Sounds strange I know but, try fixing a rolled prosthetic eye with your big clumsy fingers. Impossible. Q-tips work perfectly and I am proud to say that I offer training opportunities frequently for Oli’s new teachers and therapists. I probably have personally funded vacations for the CEO’s of Uline with my frequent Q-tip purchases. Well, okay, maybe I haven’t bought that many boxes. But I have bought a lot!

I’m sure there are many things I am forgetting but it seems like I’ve covered the emergency items needed for a trip “to the outside world” with Oli.

Memorizing the Cars Movie was not an aspiration of mine.

6 Feb

“Love doesn’t make the world go ’round. Love is what makes the ride worthwhile.” -Franklin P. Jones quotes (American Businessman, 1887-1929)

Our first trip to see the ocularist in LA was just a little traumatic…for me. Oh, you were worried about Oli? No, she was fine. I mean she cried a little bit when her ocularist Mr. Haddad first put her new conformers in but, it only took literally about 5 seconds for each eye. At least for her first set.

As her eyes stretched and the conformers got bigger sometimes it was hard to get them past her eye lids. She has only had a couple sets that were really difficult to get in. Once they are in they’re not painful.

Well, wait, I guess I don’t know that they’re not painful since she can’t tell me. I don’t think they are though because Oli doesn’t try to claw my eyes out or maim me in some way which is what she does when she is in pain.

The trips to see Mr. Haddad, and later his partner Beverly, were exhausting. We drove 6 hours (one way) to Hollywood, CA from Las Vegas every 3-4 weeks. We were usually gone about 14-16 hours total because of the time it took to snail through traffic in Los Angeles. We never stayed over night because it was just too expensive and usually one of us had to work the next day.

We took both children with us every single time. Kekoa was 19 months old when we went the first time and Oli was 2 months. To say that it was a little stressful sometimes would be an understatement. But that is what Oli needed so that is what we did.

Thank God for little portable TV’s you put in the car. However, if I never hear or see the movie Cars again it will be too soon. Kekoa watched that movie at least twice every time we went, for 2 years.

I’ll let you do the math.

Let me tell you, you get to know your spouse far more than you ever really wanted to cooped up in a small car with 2 crying children for that many hours. Driving that far so frequently was not without humor either.

I remember one night (actually the wee hours of the morning) we returned home after one of our trips. Seth got into the shower and then immediately laid down in bed and passed out. I was still awake reading when he shot up and out of bed in a panic 30 minutes later.

“Seth! What’s wrong? Are you okay?”

“I almost crashed the car Shannon! I almost crashed!”

“What?”

Apparently he was dreaming that he was still driving and thought he had fallen asleep at the wheel. It was HILARIOUS!

I know when he reads this he will give me his usual response to my rendition of this story.

“Shannon, it was NOT funny.”

It was.

I also want to dispel a common myth about Oli’s “glass eyes”.

They are not made out of glass any more, they are made out of acrylic. There, now you know. It bugs me when people say “glass eyes” I don’t know why, it’s silly. I know…I have issues.

Here is a little history about prosthetic eyes courtesy of Oli’s new ocularist Randy Trawnik.

A Brief History of Ocular Prostheses

The art of making artificial eyes has been practiced since ancient times. Egyptian priests made the first ocular prostheses, called Ectblepharons, as early as the fifth century BC. In those days, artificial eyes were made of enameled metal or painted clay and attached to cloth and worn outside the socket.”
photo_history_1

The first in-socket artificial eyes made in the 15th century were made of gold with colored enamel. In the latter part of the sixteenth century, the Venetian glass artisans discovered a formula that could be tolerated inside the eye socket. These early glass eyes were crude, uncomfortable to wear, and very fragile. Even so, the Venetian method was considered the finest in the world. They kept their methods and materials secret until the end of the eighteenth century.
photo_history_2
In the 17th century the center for artificial eye making shifted to Paris for a time. Improvements in techniques and materials followed. The French word oculariste was given to the makers of artificial eyes.

photo_history_3

In the mid-nineteenth century, glass artisans in Thuringia, a region in eastern Germany, developed a superior glass formula for the making of artificial eyes. Combined with their techniques of blowing hollow glass objects, the center for glass eye making moved to Germany. The methods of making hollow kryolite glass prosthesis are still used today in Germany and many parts of the world. Glass eye making was introduced in the United States in the mid 1800’s by immigrant German ocularists. Although the American Ocularists of this era continued to make glass prostheses, the kryolite glass material itself was exported from Germany.

The onset of World War II cut of the export of kryolite glass to the United States. With so many injured soldiers needing artificial eyes, the U.S. government searched for a replacement material. Almost immediately the new plastics industry came to the rescue. Medical plastics were already being used in the dental field before World War II. The Department of the Navy set up a crash course in applying plastics to the field of Ocularistry that lead to the development of medical grade acrylic plastic and its use in eye-making. Combined with the use of impressions in the design of the artificial eye, modern prostheses can be perfectly fit for each individual patient. The popularity of these methods has continued to increase over the years. Today the vast majority of patients all around the world wear ocular prostheses made of acrylic.

Yes. Sometimes I do hide in closets.

3 Feb

images (7)
I find it so odd that when I first meet people and tell them that I have a special needs child their first response is either A: God gave her to you for a reason. Or B. You must be a wonderful mother.

I already explained why I find A hard to comprehend when I described me and my experience when Kekoa was born. And B, how in the hell does having a special needs child = being a good mom? I am a wonderful mom, but it is not because I have a child with disabilities.

Is it because I love, take care of, feed, water, and provide for her? Because I’ll tell you, I also do those things for my cat.

Is it because I haven’t run for my life when it gets to be too much or locked myself in a closet somewhere crying and banging my head against the wall? Because I have found myself in many closets. Just not for very long. And as for running away, I did take a 30 day hiatus one time. I just came back and I came back a better mother.

imagesCAPB40ZS

Maybe it’s because a lot of people could just never imagine having a disabled child? I understand that. But you can’t meet me for 5 minutes, learn that I have Oli and then jump to the conclusion that I am amazing.

Maybe I just unknowingly emit good-mother-vibes?

Or maybe it’s just a pity statement and they are really just looking at me like “Boy am I glad that I’m not you!”

I understand that too.

Whatever the reason, special needs mom does not in any way equal good mom. There are many kids, disabled and not, living horrendous lives that I probably can’t even fathom. And there are plenty of kids out there in the world with disabilities that are homeless, in orphanages, shelters, institutions, and foster care with mothers who have left for various reasons. Maybe they were young, in a bad relationship, had mental health issues, or just couldn’t handle it. And some of them may in fact be horrible mothers.

But many of them are probably not. Maybe they did the best they could.

For some reason it just irks me to no end when I hear about a child with disabilities not living with his parents and people automatically jumping to the conclusion that their mother didn’t love them or that she must have been a monster. Maybe she was but, maybe she wasn’t.

Just like me loving Oli and raising her does not equal wonderful mom. Giving up a child with disabilities does not always equal bad mom either.

Back to this whole, “You must be a great mom” business, I realize that people just don’t know what to say. But, I’m not looking to hear anything profound.

I tell people about Oli because I want the people who meet me to know part of what makes me, me.

And I feel the need to give a disclaimer because they might see me again in the future crying and looking for the nearest closet.

You’re probably not a special needs parent if….

2 Feb

1. You have money.

2. You drive a small car.

3. You drive a nice car.

4. You don’t know what IEP stands for.

5. You don’t have a small panic attack, cringe, or cry when you hear the word IEP.

6. You go out to eat at restaurants and stay longer than 20 minutes.

7. Going out to eat does not mean going through the drive through at McDonalds.

8. You regularly enjoy meals without someone spitting a mouthful of chewed mush all over your shirt and then clapping and laughing. This is not done by your baby.

9. Your purse doesn’t weigh 5,000lbs and include things like emergency medication syringes, extra-large diapers, special snacks, multiple packs of boogie wipes, or weird toys.

10. Your wallet isn’t bursting with business cards from doctors, specialists, therapy places, schools, and support groups.

11. You never get emails titled “Sale! Feeding chair only 1 million dollars (regularly priced at 5 million)”

12. You don’t schedule your day based on what kind of mood your child is in.

13. You can go shopping with your children and never end up back in the car crying.

14. You’ve probably never been bitten, scratched, spit on pooped on, peed on, or thrown up on all in one day. Unless you’re a nurse.

15. Poop on the walls is DEFINITLY an emergency.

I Need A Cocktail!

2 Feb

“Oh, my friend, it’s not what they take away from you that counts. It’s what you do with what you have left.” ~Hubert Humphrey

And so it began…

As awful as that first evaluation was, I knew that it was only the first of many. Countless interactions with doctors and specialists, listing endless possibilities of what could be wrong with her. I know that they were trying to help us but, I started to feel like I needed anti-anxiety medication or a stiff drink every time I walked through their doors.

What kind of syndrome, disease, or affliction hypothesis are they going to throw at me today?

Sometimes I knew right away as I rushed home to Google their current theory.

Okay, I know she doesn’t have that!!

Sometimes I came up with my own diagnosis.

Whoops! Cats out of the bag!

I still do that sometimes.

(Didn’t I mention that my special needs mother hat also came with a medical degree.)

I guess in a way I am lucky. I knew right away that something was wrong with Oli. I’ve never had to search out doctors and try to convince them that something is wrong with her.

Ahhh…the silver lining?

On the other hand, I have had to convince them of things that are not wrong with her.

Yes, I promise you she can hear.

Yes, she really can feed herself a little.

Yes, she really can repeat a few words.

Yes, she really can walk a few steps by herself.

Yes, I promise you she does smile and laugh.

You are just not warm and inviting enough to have earned her smile nor are you funny enough to have earned her laugh.

Poking at her probably doesn’t help.

Sorry but, your loss.

25 Reasons You Know You’re A Special Needs Parent

31 Jan

I recently read a post on the Scary Mommy blog entitled 25 reasons why you know you’re a parent.

I would to like to add a list of 25 reasons you know you’re a special needs parent:

1.You invite random strangers (new therapists) into your house and before they get there, tell your children to quickly throw their crap around the room so it doesn’t appear “too clean” because you don’t want the therapists to expect a clean house every time they visit.

2.Meeting a great therapist is like a 12 year old girl meeting a celebrity. There are tears, lots of hugs and phrases spoken like “you’re so cool”. You also make sure you to tell them multiple times throughout a session how amazing they are and you are thrilled to have finally met one.

3.Racing through the grocery store, hollering please stop biting my face, pushing a big stroller and a little cart, shoving gluten free snacks in your child’s hands, while you watch them slowly go from quiet whining to total combustion, still managing to remember to grab deodorant (since you’ve been out for two days and have been using your husbands), and NOT cry when the checkout lady insists on talking to you about her grandson and how well behaved he is.

4.Sitting in a doctor’s office for 3 hours at least a few times a month doesn’t seem abnormal at all and now you just remember to pack every single portable electronic device in your house, a picnic basket full of snacks and also a full meal because you never know when 3 hours may turn into 5 or 6.

5.When you have to wait anywhere else with your other kids they are always the best behaved.

6.The sentence “Her eye is crooked again” is not spoken by the sci-fi character in the TV.

7.The sentence “Her eye fell out” is not from the horror movie.

8.A diaper bag is required for at least 5 years. It’s probably the same bag purchased when your child was born.

9.The medicine cabinet in your house full of syringes, liquids, and pills does not belong to a drug addict or your 90 year old grandmother.

10.You have strange swinging contraptions hanging from the ceiling and huge jungle gym equipment in your living room.

11.You go to the gym not to get fit, but simply to get out of the house. Then spend the entire time you are there checking your Facebook and bursting into fits of crazed laughter because you have “escaped”.

12.You believe that all baby items should come super-sized so you don’t have to spend a gazillion dollars on special order items that are the same ones they sell at Walmart only bigger.

13.Driving an hour and a half for a 25 minute appointment does not seem like a waste of time.

14.An hour and a half drive is actually like a mini vacation.

15.You start to actually love driving because when your kids are crying you can say “Sorry can’t get to you. Mommy’s driving” and not feel bad.

16.You celebrate pooping on the potty and reward it with high fives, good jobs, kisses, and candy. (Oh wait. That was also my 2 year old)

17.You don’t even bat an eye anymore when you check out at the pharmacy and the bill is $400. You just smile sweetly at the cashier and say “Of course. Do you accept credit?”

18.The wrong look from a stranger in the direction of your child causes you to snort, snarl, and foam at the mouth. You have the world’s best stink eye.

19.Sometimes punching people in the face just makes sense to you.

20.If someone overheard your conversation with your husband while on a dinner date they would think you were from the CIA and speaking in code. blah blah… IEP. . . blah blah. . .ARD. . .blah blah… MMHR. . .blah blah. . . DARS. . .

21.LOL! That last one was a joke. You don’t go to restaurants!! And you definitely don’t go there with your husband!

22.Dates include wearing your best flannel pajamas, renting a movie on TV and falling asleep during the opening credits.

23.Poop on the walls is not an emergency.

24.You are somewhat proud of the title “that mom”.

25.You absolutely hate it when people ask you “what is your child’s diagnosis?” and are thinking of just handing out laminated business cards because it would just be so much easier than explaining it. And you forget how to spell the damn word half the time so having it written down would be nice. Plus they’d be handy in those time when someone has the nerve to look at your child wrong. While snarling, spitting and growling you could also hand them a business card.

My booger awards.

30 Jan

“Sometimes crying or laughing are the only options left, and laughing feels better right now.”

― Veronica Roth, Divergent

So since I’ve recently been entered into the top 25 blog contestant on Circle of Moms (for my other blog. I am in the process of transferring all of the content from there to here.) I have been reading some of the top blogs. Seriously, there is a reason why the number one blog on there has like 8 million votes. It is hilarious!! I have absolutely no chance when it comes to these women and their humor.

But, I still really appreciate everyone who has voted for me. Keep voting!!! You never know, I could get 8 million votes too 🙂 Plus, I just like the thought of winning something other than the booger off my 2 year olds finger. Seriously…she presents it to me like an award. “Here mommy! Look what I have for you!” She hands it to me like it’s one of her prized possessions.

These mom blogs are about how funny it is raising kids. How, ultimately, you do get a little crazy and find yourself doing things that you never thought you’d do. Like responding “Thank you” when someone hands you a booger.

I find it interesting that there are not many funny blogs about raising a special needs child. Oh, they’re out there I’m sure and if you know of one please list it in the comments below or on facebook because I would love to read it.

I wonder if it is because no one wants to associate humor with special needs.

There is nothing funny about a child or an adult that has a disability.

And it’s really not funny in the beginning when you can’t even seem to drag yourself out of bed in the morning because the very thought of the weight now on your shoulders seems like it will crush you.

I don’t think I really truly laughed until about a year ago. I was so caught up in all that I couldn’t do and all that she wouldn’t do that I forgot to laugh and ultimately I forgot to live.

Now I see that those thoughts and sorrow were slowly killing me and if I kept on the path that I was on I was going to die a slow and agonizing death.

Now I see that I just took it all for granted and was so deeply entrenched in self pity that I couldn’t appreciate the wonderful life that I had been given.

Now I see that it is possible to move past all of those things and learn to live again and subsequently learn to laugh again.

I’ve missed that.

I’ve missed being able to laugh at myself.

It really can be funny.

Having children in and of itself is a funny journey, but having a child with special needs has it’s own unique humor. One of my friends on facebook, Jill, posts about the funny things her 6 year old daughter says.

Ella has anophthalmia and makes jokes about her blindness and prosthetic eyes. Her mom posts stories about the humor in their life. Like her whole family panicking in a power outage at night, but little Ella remaining calm and leading her younger brother to the bathroom in the darkness grumbling under her breath that she “doesn’t see what the big deal is?” I love stories like that!! (Jill, I hope you don’t mind me using you and Ella as an example.)

Yes, it can be sad sometimes, but it can also be hilarious and crazy in a good way.

Sometimes it’s okay to laugh and it’s okay to talk about the funny parts. I’m glad I realize that now and I’m glad that I remembered what it’s like to be funny.

Really all that I want to accomplish with this blog is to help the me’s from 5 years ago out there in the world stumbling along in pain trying to figure this whole mess out. If I can reach just one person who knows what I’m talking about and make them feel just a little bit less alone, then I have done the job that I set out to do.

Oh…and somehow writing about my craziness in all it’s glory amuses me.

If you want to share my blog and you feel that it may reach someone and help them, please share it. Or if you just like it and want to share it, please do.

It’s not about the amount of followers I get, or how many likes I get on Facebook or winning any awards (although all of those things are very nice and I do really appreciate them) (Vote for me!:)

It’s just about telling my story, healing through telling it, and maybe helping somebody else.

10 Things my mother forgot to tell me about being a mom

30 Jan

1. I will never eat a hot meal again.

2. Strike that. I will never eat a meal again. I will be forced to eat random snacks I find at the bottom of my purse or in the car because I will continually be too busy and forget to eat.

3. I will be expected to be available at all times during my child’s shower to adjust the temperature with the faucet because it is always too hot or too cold and can change multiple times during a 10 minute shower. (Seriously when do they learn to adjust the temperature themselves?)

4. The main sentences in my house will be the following:

• Stop picking your nose.
• Don’t stick your toy in that.
• You need to poop INSIDE the potty.
• No you can’t build a rocket ship out of crap in the random crap drawer.
• Stop picking your nose. (I say that one a lot)
• Eat your dinner.
• Sit down and eat your dinner.
• Stop crying and eat your dinner.
• No I did not make that to torture you.

6. If I get rid of the one toy that they haven’t play with in 2 years that is the one toy they will ask me about the day after I get rid of it. And then I will have to go to the store and spend $50 replacing it because I crumble like gluten-free bread under my children’s guilt trips.

7. Bedtime is actually hours after I put them in bed.

8. “Go to bed and stay there” means absolutely nothing in my children’s language. I may as well be speaking Chinese after they hear the words “It’s bedtime”

9. There are such days as Pee on the floor day. Where everyone in my house somehow manages to pee on the floor. Including the cat.

10. I will never pee or shower alone again. Someone will always barge in, bring their drama, expect me to referee from the shower stall, find a toy behind the toilet, need juice, a snack, fall down, cry, have to pee, or have a poop emergency while I am using the bathroom. Including the cat.

8 things I wish I would have known when Oli was born.

26 Jan

“None of us is as smart as all of us.” Eric Schmidt

1. I am my child’s parent 1st.

I am not her therapist, or teacher. I am definitely not her drill sergeant. It’s okay to just be her mom sometimes. Of course, I still have to work with her at home. But, I no longer have that tremendous amount of guilt when I just cuddle her instead of doing physical therapy exercises. I don’t feel guilty when I carry her up the stairs once in a while instead of forcing her to walk up them when she doesn’t want to.

A woman from the Texas School for the Blind and Visually Impaired told me this when Oli was 4 years old. It was the first time anyone ever gave me permission to “just be her mom”. I will never forget that because it was the gift that I had been aching to receive since the day she was born.

2. Think about today.

Boy, does this one catch me up sometimes… I don’t need to worry about the things that Oli will or won’t do 10 years from now. (I really like to do this!) It just weighs me down when I do. I have realized that she can do what she can do today and that is just fine. I really can’t tell you what her future will look like but, for right now, what she is doing is perfect.

3. Don’t be afraid to be Donald Trump

If a doctor talks about Oli while she’s in the room like she is not even there, I fire them.

If a doctor is not compassionate and does not realize the he/she is treating my whole family and not just my little girl, I fire them.

If a doctor or therapist seems annoyed that my 2 year old is crying and my 7 year old keeps interrupting because he wants me to look at his latest accomplishment on his Nintendo DS game, I fire them.

These doctors and therapists have no idea how many times I have dragged my other children to these appointments. How many hours of their short lives have been spent in waiting rooms and in the car driving to different appointments. If they cannot respect the fact that my other children are also affected by Oli’s disabilities, we find someone who does.

4. Google is my friend.

5. Laughter is an even better friend.

6. I probably have Post Traumatic Stress

Oli’s wonderful pediatrician in Las Vegas, Dr. Hyun, told Seth and I this while we were sitting in her office one day.

It could have been our red swollen eyes, lack of matching clothes,all around disheveled appearance and the “Holy shit! What just happened?” look on our faces that tipped her off.

It was the first validation I received that all the craziness in my head had a diagnosis.

7. Functional not Perfect

So many therapists would spend hours trying to get Oli to do things perfectly. She was never successful because the reality is, no child does things perfectly when they are just learning to do something. Special needs or not.

Oli’s new physical therapist, Cathrine, was working on trying to get Oli to stand up from the middle of the floor. (We had been working on this for a couple of years with different therapists.)

She told me on her first visit, “I don’t care how she does it. I just want her to be able to do it. It doesn’t have to look pretty.”

And guess what….Oli did it!

8. Special = Expensive

Having a special needs child is very very expensive. I had to claim bankruptcy when Oli was 6 months old because of the mounting medical bills, co-pays, and things our insurance didn’t cover.

Very Special = Very expensive

(It’s okay. I’ll still take very special, even though it means I’m broke all the time.)

thecrumbdiaries

Logan is challenged but not limited, and he is living his life like a boss. I am just lucky enough to be along for the ride.

Mommy Got Her Groove Back

How a new mom, and wife does parenting and daily life.

Lessons from my daughter

Although all doctors agreed she would do nothing.....

I'm fine, but my Mommy has issues!

Raising a daughter with special needs.

Living on the Spectrum: The Connor Chronicles

Our family's adventures in the world of ADHD and Autism.

Parenting And Stuff

Not a "how to be a great parent" blog

don of all trades

Master of none...

The Third Glance

A peek into my (Autistic) mind

One Stitch At A Time

Making my way back in time.

Disability Watchdog

Exposing Injustices for Vulnerable People

My thoughts on a page.

Living, Laughing, Loving, Loathing.

It is Well...with my Soul

Sure, my hands are full. So is my HEART!

Chopping Potatoes

And other metaphors for motherhood

This is the Corner We Pee In

Bulletins from the Parenting Trenches...

clotildajamcracker

The wacky stories of a crazy lady.

This is the place

visiting places where writers were born, lived, loved & are buried.

My Dance in the Rain

The journey of my life, my path to redefine myself and a special little girl with Cri du Chat Syndrome and Primary Ciliary Dyskenisia who changed it all.

Prego and the Loon

Pregnant and Dealing With Domestic Violence

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