Tag Archives: special needs

Fasten Your Seatbelt, This Road May Get Bumpy

19 Feb

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It was sometime around this point in Oli’s life that I decided I would learn braille. I mean, why not, right? My daughter was still in diapers, had about 4 teeth, could say one word and had just learned to sit up. Why wouldn’t I want to learn braille so I could start teaching her immediately something that blind kids don’t really learn until they are about 5 years old(give or take-I’m not completely sure because Oli hasn’t even started it yet. So glad I ran that gauntlet 5 YEARS AGO!!).

That picture of the crazy mom at the top of my blog, that is cartoon me. She has blond hair because what suburban house wife/stay at home mom doesn’t picture herself as a smoking hot blond bombshell. Or is that just me? Maybe I watch too much reality TV.

I love how chic it is to say “housewife” now. Much better I say that, than tell people I don’t have a job or tell them I take care of my 3 children…all day…everyday…and I never get out of the house…or put real clothes on. . .or have any friends…

See how she’s holding her head. That’s me totally flabbergasted by this whole crazy, loopy, bumpy path that is the road of a mom with a child with disabilities.

Before I had kids my road looked like this:

road 1

It was smooth, newly paved, no potholes and was 100% safe. I didn’t even need a seat belt.

When I decided to have kids it looked like this:

road 2

Highs and lows, a few tiny pot holes, but I could still see where I was going. There were beautiful flowers by the side of the road and sunsets and rainbows in the distance. (I’ll bet you didn’t know that I am also an artist. I will now add that to my resume of blog writer, magic Q-tip eye ball manipulator, Binky locating expert, and projectile vomit catcher.)

After Oli was born my road started looking like this:

road 3

Most of the time I can’t even see where the hell I am going and have no clue where to turn next. I just bump along, twisting, crashing through potholes the size of Connecticut, and try to avoid the boulders falling on my head. A 5 point restraint race car driver seat belt is required for this road. It gives me a terrible headache. That’s also why I’m holding my head.

And I’m holding it because I get crazy ideas like learning braille when my baby is 8 months old and I run with them full force, balls to the wall. It makes my head spin so I’m trying to hold it on so it doesn’t fly off while my mind is traveling at 500 million miles a minute.

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I might have a few issues, but I did learn un-contracted braille that year:)

I probably get my neurosis from my mother. She learned un-contracted and contracted braille that same year. Along with the numbers, math, and maybe music? Basically the whole shebang of braille. She was ready to open up her own little braille school and teach all the little blind babies of the greater Las Vegas valley.

Never underestimate the love that my mom has for her grandchildren.

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My Special Needs Mother Hat

18 Feb

“A woman is like a tea bag; you never know how strong it is until it’s in hot water.”
― Eleanor Roosevelt

I talk a lot about my journey to obtain my special needs mother hat. I don’t know why I use this term. I guess it just gives me a good descriptive picture in my head and explains a major role I play.

To me, this hat looks different than a mother hat. My mother hat fit well the first time I put it on. It was easy to wear, simple, elegant, and light. It was beautiful from the beginning and did not tear easily. When it did, I could take it off at night and stitch up any holes it acquired during the day. My stitching was never loose, came apart or was crooked. It always came back together nicely. It rarely fell off and never seemed heavy. I was proud to wear it and frequently showed it off. I enjoyed this new hat tremendously and was very reluctant to turn it in for my special needs mother hat.

When I got this hat it was WAY too big. It fell off all of the time. Sometimes it just blew right off my head. In the beginning I forgot that I had it and a big gust of wind would come along and POOF! Gone. I would have to go chasing it down the street. Sometimes I threw it to the floor in a moment of rage, frustration, or grief. And sometimes I just tried to leave it on the counter at home. I tried to pretend that I didn’t have it and that it wasn’t sitting there waiting to adorn my head like a 1000lb weight. It was extremely heavy. It had all kinds of straps, buckles, and ties attached to it that I couldn’t figure out. It had random flowers on it with names that I couldn’t pronounce. It was uncomfortable and became worn out looking. Rips and tears began to decorate the sides and no matter how hard I tried to stitch it up, my stitching never fixed the holes. They were loose, crooked and simply came apart by an unexpected tug in the wrong way. The whole hat would just fall apart. I would carry my hat in pieces back home and painstakingly try to put it all back together. At first it seemed destined to be big, ugly, uncomfortable, and prone to making me feel like an outsider. It seemed nobody had a hat that looked like mine.

After I wore it for a while, I began to notice other mothers whose hats looked like mine. They were worn and tattered, but had been repaired with beautiful hand crafted stitching and appeared loved and cherished. These mothers looked at me in my hat and smiled a knowing smile and pointed to their heads. “See. I’m proud of my hat. It may appear complicated and worn out to you, but to me it’s beautiful. Your hat will be beautiful too one day.”

Slowly I began to notice new things about this hat that I hated at first. I was learning to pronounce the names of the flowers on it and figuring out the buckles and straps. It wasn’t so big anymore and no longer blew unexpectedly off my head. It began to fit better as each day I grew a little more confident in my role. Every once in a while I still throw it to the floor, but now my reasons are different. It still gets ripped and torn, but I am learning to sew it back up and now my stitches hold it together. It doesn’t fall apart so easily and my stitches are straighter and stronger. I’ve learned to love each and every rip, tear, crease, and stain on my hat because each one has a story. A moment in time and a memory of where I have been and what I have gone through. It isn’t so uncomfortable now and it doesn’t make me feel like an outsider. Now it makes me feel like part of a group. A group of mothers with special hats and special roles that we love and feel honored to have. Now I’m not ashamed of my hat and I never try to forget it on the counter. I walk out of my house each day with my head held up high. Proud to show off my journey with my special needs mother hat.

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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.

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What did I do before Facebook?

4 Feb

“Friendship is born at that moment when one person says to another: “What! You too? I thought I was the only one.”

― C.S. Lewis

As I struggled to understand what the doctors were telling me, looking up every unfamiliar word, phrase, and condition, I was also furiously searching the Internet for other families who had kids with Oli’s condition.

There had to be more of us out there! Where were they? This was pre-facebook when it was not as easy to find people or support.

Finally I stumbled across a Yahoo online support group for families of anophthalmic/microphthalmic children. I submitted a request to join the group explaining that I had a one month old daughter with the condition.

I was silently begging this woman on the other side of the country….

Please, please accept me. Please tell me that you can help and that you understand.

I received an email the next day telling me to follow the link to the online forum. I waited until everyone in the house was sleeping before I went back online.

With the darkness of the house surrounding me I was looking into a new light, a new hope via my small computer screen.

I clicked on the link and walked into a whole new world. A world in which my child was no longer a small minority with a strange condition. A place where I was no longer just one mom alone on this foreign voyage. I had found the hope and the sense of community that I had been looking for.

I read through numerous conversation links and looked at handfuls of photographs of children who looked like my Oli. Beautiful children with positive and inspirational parents who told me not to be discouraged. They told me that they too lived my story. My life, her life, her future was not to be without hope. I could be myself with them. I could be angry, express my grief, my sense of loss. I could tell them about the strange looks that people gave my daughter. I could tell them how annoyed I was when people thought Oli was sleeping because she couldn’t really open her eyes. They understood because they too had the same experiences.

They knew me and they knew my struggles. I never had to pretend with these women. In the months to come I clung to my computer screen in the darkness and welcomed that light. I asked many questions and always received honest and compassionate answers. I found friendship in a most unlikely place. With women I would never meet. Most of them have never heard the sound of my voice, invited me over for coffee or out to lunch. Most of them were just names on the computer screen. But, those women knew me in those early days. They knew me better than some of my closest friends because I told them how I really felt.

I never told them that I was fine.

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Growing up with Oli

4 Feb

IMG_1076“You are here in order to enable the world to live more amply, with greater vision, with a finer spirit of hope and achievement. You are here to enrich the world.”
― Woodrow Wilson

I have often wondered what it is like to be a sibling of a child with a disability. I know it’s an adjustment for any child when a new baby is brought into the house. But, what about the child whose life is forever changed beyond just having another little person to live with. It is so much more than parents now being more preoccupied with feeding routines, frequent diaper changes and crying episodes. And it’s more than just knowing that you now have to share mommy and daddy’s attention with a new sister when, well lets face it, you probably weren’t all that thrilled about her joining you. Especially since you were an only child up until now.

Your life changes because now life is riding in the car for hours and then sitting in little rooms with crappy toys and being told to “be quiet” while you try to wait patiently. It’s waiting in these rooms several times a week when all you really want to do is go back home and play with your toys and watch the Cars movie…again. It’s sensing the atmosphere change in your house and feeling the weight of a sadness that you don’t understand but, seems to have followed your sister home from the hospital. The weight that seems to intensify after waiting in another one of those little rooms.

As you get older you start to notice that your sister, who you have waited to play with since she was born, never seems to get old enough to play like you. She doesn’t sit up very well when she does learn to sit up and then she can’t see when you try to show her your newest Lightening McQueen car or your new Hot Wheels race track. Mommy tells you to put your toys in her hands to show her things, but frankly this doesn’t make sense either because then she only puts your new toy in her mouth and ruins it with slobber. She never learns to move around the house which means mommy has to carry her every where. The words “Oli just needs more help” are lost on you when you just want to be picked up and carried around like before. You love your sister but, just don’t understand her. You ask questions and want to know why she is so different than you but, mommy’s explanations that God made her different don’t make sense. Why can’t the doctors just make her better. She is obviously sick and this is what doctors do. Why doesn’t she ever get any better? Why do they keep taking her to the doctor if they don’t fix her?

As you grow and change, learn your letters, learn to count and tie you shoes you try to show your sister so she can learn too. But, your attempts are to no avail and she doesn’t seem to get it. She won’t talk to you and now you are drifting farther and farther apart. She starts to do strange things like flap her arms, hum loudly and shake her head. You try to play like her to connect with her in some way but, what seems to amuse her is just boring to you.

You never give up though. You never give up trying to form that connection with her.

She is your sister despite your differences. Mommy and Daddy have always taught you to love her and help her and that is exactly what you do. Not so much out of a feeling of obligation but, because that is just who you are.

Kekoa you are such a special little boy. I love that you just love her and even though it’s been 5 years since everything in your life changed, it has never dampened your spirit or your love of your family and life. Please keep your kind heart and don’t pay any attention to people who may try to lead you down a different path.

You, my son, are going to change the world.

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Yes. Sometimes I do hide in closets.

3 Feb

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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.

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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.

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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.

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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.

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As long as nothing else is wrong…

29 Jan

“Prayer is not asking. It is a longing of the soul. It is daily admission of one’s weakness. It is better in prayer to have a heart without words than words without a heart.”

― Mahatma Gandhi

As we left the Nevada Blind Children’s Foundation that day I felt a little less alone. I finally met someone who knew what microphthalmia was. I still didn’t know what this would mean to my daughter but, I began to have that tiny seed of hope again.

The woman from the foundation told me that even though her son had bilateral microphthalmia and the doctors told them that he would be totally blind, he was actually able to see a little bit of red light. So maybe that was a possibility for Oli. Maybe she wouldn’t live in complete and total darkness. Maybe if I began to pray hard enough she would be given the gift of having some kind of light perception.

I began to once again direct my prayers toward Oliana having vision.

I didn’t realize then, that praying for someone to be given something, is not really how the whole prayer thing works. Although I was praying for her to have some sight, part of me was really praying for an easier life for myself. If she could see something, anything really, it would probably make this whole thing easier.

If she could see something she wouldn’t be among the small percentage of people who are totally blind. That small percentage that I had read about, many of whom are illiterate and unemployed. And if she wasn’t completely blind, I could probably still force her to fit into my little box of perfection.

As long as nothing else was wrong.

Many times I also prayed “God if she is going to be blind, let her just be blind. Please don’t let anything else be wrong.”

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And then….they just let me take her home.

25 Jan

“In three words I can sum up everything I’ve learned about life: it goes on.” -Robert Frost

Now I have answers to most of those questions.

No. She would never see her daddy’s face. But, she would see how beautiful his soul is every time he holds her close to his heart. Every time he fiercely protects his baby girl.

Her brain appeared to be normal but, they would have to do a MRI to be sure. This would not tell me anything about her cognitive function, however. I did not realize back then that the words “her brain appears to be normal structurally” did not mean she would have normal cognition. It turned out to be a blessing that I did not know that then.

Her kidneys were anatomically normal. Except for some extra fluid in them called hydronephrosis and something called vesicoureteral reflux.

What the heck is that?

Pertaining to her story, it was pretty insignificant. She ended up just having a few procedures and was required to take medication so she wouldn’t get a kidney infection. Although the procedure called a VCUG, to test for the reflux, was traumatic for her it was probably more traumatic for me. She eventually grew out of it by the age of 3.

The hearing screen result was a little hairy. The first screen they ran was normal in one ear and abnormal in the other the first time they did it.

You can imagine my reaction when the hearing screen person told us the results. I will never forget the look on her face as she tried to be as gentle as possible explaining that they would have to test her again.

She knew that Oli was blind and I could tell that she wanted nothing more than to tell me my baby would be able to hear me. She could see the look on my face as I silently pleaded with her to tell me the test was normal.

Please let her hearing be okay.

“We will have to run the test again tomorrow. This does happen sometimes. Sometimes we run the test too early after delivery and there is still fluid in the baby’s ears.” she told me as gently as possible.

She came back the next day and tested Oli again.

The results were normal.

She did hear all of my expressions of love.

She did hear me when I repeated “I am so sorry” over and over again.

She heard me when I vowed to do absolutely everything in my power to ensure she had the best life possible.

And then the nurse came in and told me I could take her home.

Just like any other baby. They told me to just take her home.

What was I supposed to do with her next?

They were going to let me just walk right out of the hospital with her?

Were they crazy?

I needed a few more days!

I need to prepare.

I needed a battle plan, an army of soldiers to protect her from the world.

I needed to erect some kind of force field around her.

Wasn’t there some sort of pamphlet they were supposed to give me providing detailed instructions?

Wasn’t someone going to tell me what the next step was?

I was absolutely terrified.

The hospital staff just assumed that I would know what to do?

Why?

Just because I was a NICU nurse?

I was not NOT a nurse at that point. I was a new mother and I needed support. I needed to know there was a path that I was supposed to follow. I wanted someone to direct me and tell me where to go.

I will let you in on a sad little secret of the special needs world. Most people do not tell us where to go for help. Nobody provides us with a list of all the services that our childrn can benefit from. The services our children are entitled to. I guess they think that when we get the diagnosis we automatically absorb this information through osmosis. By being in close proximity to other special needs parents.

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