Monthly Archives: July 2013

Summer Guest Post #4 by Becky of Mixed Up Mommy

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Summer Guest Post by Becky of Mixed Up Mommy
 



I hadn’t felt that sensation of jealousy and anger in several months, but last week, as we were waiting for swim class to start, the two little girls in Connor’s class walked up to each other in excitement. The parents were joyfully greeting each other. They hadn’t seen each other in a couple weeks due to the Fourth of July holiday and illness. But the real source of excitement was that girl #2 was now walking. Girl #1 had been walking for a couple months. Connor’s age (16 months) lies somewhere in between the two. He is not walking and probably won’t be for months. 

 

Connor was born with a genetic disorder (occurrence is 1 in 6,000 live births) called tuberous sclerosis complex. Never heard of it? Neither had we. It is characterized by the growth of benign tumors on the organs. The brain, kidneys, heart, eyes, and lungs are the most commonly affected. Two gene mutations have been identified so far as causes of TSC, chromosomes 9 and 16. Connor has a mutation on 16 and is considered to have TSC2. About 2/3 of cases are spontaneous mutations, meaning it wasn’t passed down from a parent.

 

TSC presents very differently from person to person. Some people are fortunate enough to be so mildly affected that they don’t know they have it, while others need full-time care. Difficult-to-control seizures are extremely common. Because of the brain tubers, risks  of learning disabilities, mental retardation and autism are very high. The reality is that he is too young for us to know exactly how he is going to be affected. We just have to wait and see.

 

Connor’s seizures started hours after birth. It took five weeks in the NICU to get enough control to send him home, though he would need to return three months later for brain surgery. The tuber causing the majority of seizures was removed from his right frontal lobe, his progress sped up and we had a month of seizure-free life. Then came the infantile spasms. More panic. More meds. Finally control. Then came the return of complex-partial seizures. The seizure road has been full of ups and downs, but I’m still hopeful control is in the future.

 

 

Connor is developmentally delayed and receives physical, speech, music and aquatic therapy. But the last couple of months have been amazing. He actually rolled from stomach to back on time, but he refused to go the other way, fighting tummy time at all costs — I guess he just really wanted to wear one of those cool cranial remolding helmets for a few months. Suddenly, several weeks ago he finally discovered that getting on his stomach opened the door to mobility. Since then his range of movement has exploded, and while he doesn’t move in the way a typical 16-month-old does, he’s still managed to create a path of destruction in the living room. He really looks like he’s on the verge of crawling, too.

 

 

So I had my moment in swim class. But that’s okay. My baby boy is crushing it every day with a smile on his face. Today I had to pull him out of the fireplace. And I liked it.




Rebecca Gaunt is a mom, a Blogger and a Freelance Writer
She is the Chair of the TS Alliance of Atlanta/North Georgia

You can find her on her Facebook page Mixed Up Mommy or her blog








 

 

Summer Guest Post #3 by Kelly of DeBie Hive

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Guest post by Kelly of the fabulous DeBie Hive Facebook page and blog
 
 
 
 
 
 
I am honored to be writing today for Allyson, one of the people I am grateful to have “met” through this strange and beautiful online blogoverse.

When I was trying to decide what to write about for her, I knew almost immediately what it would be. Since she shares so much of her life journey with us, about what it is like raising a child like Logan, I thought I would share a piece of my journey in parenting as well.

I have four children, two of which have ADHD. Though it’s a condition more often associated in many people’s minds with boys, the girls are the ones in my family that struggle with it, which makes sense considering the fact that I most likely have it even though I have never been formally diagnosed.

My oldest daughter has the hyperactive version of ADHD, which basically means that her internal motor runs a bit faster than the rest of us. She rarely sits still for any length of time, and never has. When she was a toddler, she never actually sat anywhere. She perched herself on chairs in strange positions at times, but I wouldn’t call much of what she ever did sitting.

She was a difficult toddler, often struggling with the ability to control her impulses. I’m thankful that she is a naturally cautious person because without that tendency, she probably would have hurt herself a lot more than she did. For years she was a walking bruise as it is.

When she started school, she learned very quickly that if she didn’t control herself that she would be picked on, even by friends. Her teachers weren’t sure quite what to do with her because her activity demands were closer to the boys in the class than any of the girls. She did good controlling it almost all the time, except for the rare occasions when she would jump up on her desk like a frog without warning or kick her legs out like a donkey in the middle of a lesson.

She worked so hard to control her impulses during the school day that the hours after she got out of school became horrendous at times. She lashed out, usually at me, often violently. She yelled, she screamed. It was literally as though the cork was removed and all the pent up bubbles had to come out at once. This went on for years, but I tolerated it because I knew I had to. She had (and she still has) the ability to control herself at school unmedicated…it just means that I may have to deal with the Tasmanian Devil for a while after the day ends.

I learned a long time ago that she can’t do homework right after school. She needs to unwind first, and for her that means she needs to run until her lungs burn. In a cruel twist of irony, she is the one with severe asthma. Hyperactivity + asthma = some very interesting days in our lives.

I also learned that when she gets that glazed look in her eye, she just needs to run. I know she won’t listen right then because she can’t. So I let her go. Fortunately, as she has aged, her symptoms have lessened. Either that, or she just does a better and better job of controlling it.

My younger daughter has the other version of ADHD, the inattentive type. This is the same version of it that I have. I’m sure looking back that I’ve always had it, I was just able to rely on my intelligence to mask it.  She did the same for many years until she couldn’t anymore.

Starting in Kindergarten, she fell further and further behind in reading. An obviously highly intelligent child, we were all a little frustrated that she struggled so much with something like that. She was put on literacy plans. We tried reading with her at home all the time, but she fought us tooth and nail. Her stubbornness made it almost impossible to make any real progress.

After a while, it became obvious that she was glancing at the first letter of each word, then just guessing what the word was. It wasn’t until about six months ago that I realized what was actually happening. Instead of reading along with her, I stopped watching the page and started watching her face. Her eyes darted everywhere, never actually looking at the words for more than a fraction of a second at a time.

As soon as I saw that, I knew. She wasn’t even reading. She WAS guessing. And she was doing it because her brain wouldn’t let her even look at the page long enough to read the words. I kicked myself heartily for not figuring it out sooner.

Once I saw it, I had my husband, her teachers and her doctors all watch for it. Everyone was in agreement. She had inattentive type ADHD, and any behavioral therapy to try and reduce it wouldn’t help. She’d already been pulled out for small reading groups, away from the classroom setting for years. We’d already reduced every possible distraction at home, and for naught. She needed medication.

It was a decision I came to reluctantly, particularly after having already parented a child with ADHD unmedicated for years, but it was one that I knew I had to make. To reassure me, her doctor reminded me that we could just do a trial run and see how it went. If the medication didn’t work, then it wasn’t ADHD. If it worked, it would help her.

The first day she took it, she sat down and read.

There was no avoiding the summer school that she was inevitably being sent to this year, but she has become  a passionate reader now. She’s just about at grade level, which is remarkable considering how far behind she was. As a parent, I beat myself up a bit for not figuring it all out sooner, but I know that we are doing what we need to do for her now.

I’ve been roundly criticized by many people for not medicating one of my children, for medicating the other. I’m damned if I do, damned if I don’t. I don’t honestly care what anyone else says. I do what I need to for the children I am responsible for, and I don’t expect anyone else to really understand what our situation is. They aren’t in my house, they aren’t the mother of these girls.

I’ve been told that they are “just kids” and that they will outgrow it. Then I take a look in the mirror and I know that even if they get better at controlling it, they are never going to outgrow it.

I’ve been told everything would be better if we just eliminated x,y, or z from our diets or if we just took this supplement or that. What those people don’t understand is that we have done a lot of diet elimination already, we’ve supplemented, we’ve exhausted all of that.

I look at my girls and I know that they are amazing. They are smart and funny and quirky and talented. They have already overcome so much in their short lives, and they are thriving.  ADHD isn’t a curse. Quite the opposite. If you look at it the right way, it’s an opportunity. I’ve had to parent my girls more because of it. I’ve had to interact with them more. I’ve had to learn more about them. They’ve had to learn more about themselves, and there is no possible way that’s a bad thing.

You’ll have to forgive us, all three of us girls in this house, if we need a few moments to refocus from time to time. It’ll be worth the wait. I promise.

The wall

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Last night we all piled into our ‘camping out’ room- my bedroom, the bedroom with the air conditioning. Me, Seth, Logan on his mattress on the floor and 3 dogs. The conversations are hushed, the light dim. The mood is so playful and relaxed as Logan and I joke with each other until I look down and he’s asleep. I turn off the lights and sigh..I love this life..at this moment, all is perfect in my world.

We wake this morning and as usual I go downstairs with dogs and get my coffee. I hear the door open and then footsteps to the bathroom. The shower runs. A few moments later he comes downstairs in full work attire, ready for his Thursday workday. I am looking forward to the elevator ride so I can show him the “Hello Logan” sign I secretly stuck in the empty phone box.

Just as we are set to leave, we hit a wall. A big, giant, cannot go around concrete wall. I have hit this wall before and I still bear scars from banging my head against it. This does no good. There is no way over it, through it or around it, you just have to endure the pain of hitting it, back off, and wait.

There is no explanation really. Its confusing and beyond frustrating. It was a small argument over something dumb, but it sent him stomping to the bathroom, the only room that locks- and *click* it was all over, he was barricaded in and done dealing with me. (That lock is coming off TODAY).

I hate these moments. I really, really do. We have missed important things because of this concrete wall. We’ve been late to parties, missed appointments, rushed to things we had plenty of time to get to…I glance at the clock and know if I wait too much longer, I will miss a spot in the limited parking lot at work. I have to make a choice. I have to give him a choice.

“Logan, we need to go. You need to come out of there so we can go. I know you’re pissed off at me, we can talk about it on the ride to work.”

**********silence*********
 
So I leave him. I grab my stuff and go out to our shop to tell Seth “He’s all yours”. He looks confused because he had just been inside and all was well. I don’t even have the patience to explain it all and he understands. He too has scars from the wall…
 
That frigging wall that separates us from our child. That horrible wall that prevents us from knowing what he really feels in those moments. I know he gets frustrated, I know he gets angry. He can’t be happy and cooperative all the time. He is entitled to have those moments of being pissed off and having some time alone. It’s just that damn wall…I hate it.
 
I drive to work in silence next to an empty seat that should have my co-worker in it. I realize my secret phone sign will go unseen. I wonder what he’s doing or feeling. I worry that maybe I should have waited for him. I hate that wall for locking me out of his world. I am frustrated with this life…at this moment, all is empty and confusing in my world. 


Guest Post #2 – Shannon of Mommy Has Issues

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Guest post by Shannon of Mommy Has Issues
 
 
I slip quietly into my 6 year old daughter’s room and avoid turning on the light. Before I wake her up for school, I peer through the darkness to stare at her peaceful sleeping form. Her eyes are closed and she has one hand resting gently on the side of her face. She’s kicked off all of the covers and is lying on her stomach with her knees tucked up underneath her body. She’s so still, so quiet, so lovely.

I bend down and place my hand on her back, whispering close to her ear “Oli. Oli. It’s time to wake up now.”

Slowly her eyes begin to flutter open. She puts her hand over her face and moans softly.

“I know honey. It’s time to get up.”

I sit her up in bed and lift her up and over the baby gate that keeps her from falling off the bed at night. She rests her head on my shoulder as I carry her down the stairs. Her body relaxes against mine as I talk quietly into her ear and ask her about her dreams.

“Did you sleep well baby girl? Did you have nice, happy dreams? You did, didn’t you?! You had nice, happy dreams and you woke up with smiles and are going to have a great day today. Today is going to be a fantastic day. Aren’t you excited?!”

I set her down at the bottom of the stairs and hold her hand as she walks into the living room. I guide her around the furniture and push random toys, which are lying in her path, away. When we reach her favorite maroon colored chair in the living room, I ask her to reach out her other hand.

“Here’s your chair Oli. Here it is. Now turn around and sit down while I go make your breakfast.”

She turns around slowly, scoots back, and curls up in the chair. I continue talking to her, telling her about the day, and asking her questions.

But Oli doesn’t talk back to me.


She doesn’t answer my questions or tell me about her dreams. She doesn’t complain about being tired or say that she doesn’t want to go to school. She never says that she doesn’t like her outfit or the way I’ve done her hair. She doesn’t wake up in the morning and run down the stairs, demanding breakfast or fighting with her siblings. She never wanders into my room to wake me up first, even though she’s six.

Oli doesn’t say anything. Oli doesn’t walk or run around on her own.

Because she’s nonverbal.

Because she’s autistic.

Because she’s globally developmentally delayed and has seizures.

Because she is also totally blind.

Oli was born without eyes.

Severe bilateral microphthalmia. That’s what her eye condition is called.

Blind. No eyes. Severe bilateral microphthalmia. Those words ran through my head a million times in the first few months…no that’s a lie, the first few YEARS after she was born. My baby girl was blind.

I couldn’t believe it. I had no idea anything was wrong with her before she was born. I had no idea until an emotionless doctor walked into my hospital room on her second day of life, while I was sitting on a bed with crisp white sheets, all alone, and announced that he didn’t think she had eyes and was going to be blind for the rest of her life.  

What? What did he just say? Blind. No. No! That couldn’t be right! I didn’t sign up for this! No one told me that this was a possibility when I decided to have children. I was supposed to have healthy children! My life was supposed to be filled with roses and rainbows and beautiful sunsets. Blind? How could she be blind? I had never even met a blind person! What the hell was I supposed to do now?

No one could tell me. No one really knew. We went to LOTS of doctors and specialists and sat through TONS of evaluations and examinations. We were told that she would NEVER do this and that she MIGHT do that. I cried, I pleaded, I screamed at God. I prayed that things were different. I wished that it had been me that had been born blind and not her. I couldn’t sleep. I couldn’t eat. I couldn’t understand why. Why did this happen? I dreamed in fantasy lands where my life made sense and I recognized myself in the mirror again. I pressured myself into exhaustion worrying about what she would be able to do. I lied to my friends at work and bragged about things that she wasn’t even doing yet.

“How’s Oli? Oh she’s great! She’s 18 months and learning to walk. That’s exceptional for a blind child! She’s doing so well! She’s right on track!” This is what I told everyone. This is what I WANTED for her. The truth? She wasn’t walking at all. Not even close. Unless you count me carrying her around with her feet brushing the floor and me moving her legs back and forth. Is that walking? No? I don’t think so either.

I used to think that her slower progress was somehow a reflection on me as a mother. I thought that if she didn’t do all of the “normal” childhood things and hit those milestones in a timely fashion that I had somehow failed her.

Turns out? I was wrong. What she is able or not able to do has nothing to do with my abilities as her mother. She will do what she will do regardless of how much time I spend worrying about it. Regardless of how much time I spend crying over it. Regardless of how much time I waste wishing it was different.

I also never told anyone how broken my heart was. I never said that once the sun went down and my family went to sleep, I sat out in my living room for hours crying and sobbing until I had no more tears. I never told anyone how much I hated it. I thought that if I said “This is really hard” you would hear “I don’t love my daughter.” You never heard that at all. You heard “This is really hard”. It was all in my head. I was wrong about that too.

Eventually, ahem…5 years later…I learned that I had to accept her for who she is. I had to come to terms with the fact that this was HER life, HER struggle. It was who she was. No matter how much it felt like this had happened to ME in the beginning, it hadn’t. It had happened to Oli. My only job was to love her and support her in any way that I could.

I stopped listening to doctors and therapists who told me that she would NEVER do ______.  They don’t really know. How could they know for sure? Oli is the only one who gets to decide what she will or won’t do. Only her. No one else. The absolute best doctor we ever went to was an oculoplastic surgeon at UCLA that when we asked him if she would ever have light perception said this, “Based on the MRI evidence that she is missing her optic chiasm, the possibility is unlikely. If it truly is missing, she will not see anything at all. However, I am only a doctor and the MRI is only a machine. We get it wrong sometimes. Oli will have to be the one to answer that question with any absolute positivity.”

I know right?! The BEST answer. And you know what? He was right. He was right in regards to all aspects of her life. You never know what a child will or won’t do until they show you what they are capable of.
 As parents…all we have to do is keep believing in them.

Summer Guest Post #1 Beth Navarro of Mother-naked

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Guest post by Beth Navarro of Mother-naked. She is a mom, an author and a hula-hoop champion! Check out all of her awesome sites all linked at the bottom of the post. 
 
 
 
 
I don’t know what I thought parenting would be like. I don’t remember that pre-baby brain of mine. I do know I could not have  possibly imagined all that has happened these last six years since becoming a mom. No amount of parenting books will prepare you. Not really.  And every parent you know will tell you some version of: “It’s hard. It’s amazing. There is no love like it.” Which is true, but until you experience it, they are just words. So I had no idea what to expect, but I did find a life preserver, writing about it.
A big reason why I write my raw and sometimes silly blog, Mother-naked, is because sometimes I have to see it in writing to believe that the shit that happened, happened. Yes, Beth, you really did worry for a good week that your six-year-old, Love Monster, would become a stripper because she dug poles so much and loved to be naked. And I made peace with it dammit. If I had to pay twenty bucks for a lap dance to spend quality time with my girl, I’d do it.
You have to laugh at your worries. And being a parent is naturally ridiculous. The shit you have to do. The shit you say. You can’t make it up. Running out of material is impossible. It’s REDICULOUS. Here you are barely hanging on to what you’ve figured out life is to be so far and you’re expected to raise this new human who looks up to you like you know everything. It’s a crazy situation. You go from rule enforcer to chef to butt wiper to their pet pony in a matter of minutes. You better know how to roll with that.
I stuck with writing  the more comedic side for a while until last year. I decided to follow my gut and write whatever felt true. If it came out serious, well damn, my readers would deal. I wrote about going through a silent internal war thinking I’m a bad mom and found I was not the only one. Though my next blogs on the docket are about how Love Monster huffs her teddy bear so hard it rivals an addict and their Scotch Guard static cling spray and how I’ve realized I’m  letting myself get bullied by my three-year-old, Smirker, for candy. Anything goes on my blog.
My other life preserver is all the amazing mom and dad bloggers out there. Being a parent really is like being in a club. The common ground is comforting. “Holy shit, your kid got kicked out of preschool once??? Mine too!” That rush of maybe-I’m-not-totally-fucking-this-up is addictive.
One of the first times I purused The Crumb Diaries on facebook, I was looking at a picture of Logan. I wish I could remember which one, not that it would matter, because all have the quality Love Monster noticed.
 “I love his smile,” Love Monster said looking over my shoulder.
That is what she saw. No differences. Just love and happiness.
Well that just made my sarcastic, sometimes-cynical self all warm and fuzzy. Though this didn’t surprise me concerning her. She’s always been so open. She herself is in a special ed class. She has ADHD and some sensory issues, but she is doing well. She just finished her first year of Kindergarten after a very rough start. I’ll never forget looking at her one day with worry in my eyes: Is she going to be okay? Will she catch up? Will she make friends? The look she gave me was startling. It said volumes, “Mama, It’s all good. I’m going to do it all. At my own pace. I’m doing just fine. You’re doing just fine.” I learn a lot from my girls. That is what parenting is. Learning. All of us. Learning.
What have I learned from Logan? To not judge. I thought I did this already, but I don’t think I really did. I look for his smile in everyone now.
What have I learned from Ally? To write and share with complete honesty. She feels like a soul sister. Thanks for the inspiration, Honeynugget. You are the real deal.
I must also add my girls and Logan would have a seriously good time playing ponies. The girl’s collection is getting out of control. And I’ve seen all 60 episodes of My Little Pony. More then once. Oy.
I will press on trying to figure out this Rubik’s cube parenting puzzle I’ve been given. Maybe one day all the colors will align. Or maybe I’ll realize that the mixed-up colors are just as beautiful.
 
Beth Navarro writes a blog, Mother-naked and is a children’s book author. Check out her facebook page and website!