Night Terrors, Fevers, and Seizures

Demons come into our house at night
To steal our hopes, dreams, and maybes
The tears, the heart ache, despair come in those dark moments

A child screaming, deep asleep, trapped in terror
Scared of windows, shadows, voices, sensations and sound,
You pray for kind and understanding neighbors

Loose tears still flowing, shivering in your arms, clawing at your wrists
While you're slowly reassuring and silently praying,
You realize this may never get better, it may never be outgrown

A Mother's Despair released in the quiet darkness
Silent tears and loneliness sound so loud.
Kneeling, holding his hand, my Son suddenly says: "It's okay mom, I love you."


A little boy's love lives here. Demons do not.

@2014 Twingle mami (LCL)

Out with the old, it's a new day!

We unexpectedly and pleasantly got a min-staycation without kids last week. The kiddos asked to sleep over at my parents. I love that my seventy something dad does his own research and reads about autism. My dad does floor time without realizing he’s doing something called floor time. My kids are very lucky to have the family that they have. 

It was nice to see that glimpse of who we used to be and to know that it is still there-- Somewhere. It’s kind of hard to still remember why you got married when you’re the only one advocating for services or working on therapies and goals with the kids. Well it is!  

I was a different person before kids. I was more focused on work and in some ways more immature. My husband and I never argued to the severity and extent that we do now. Sure we had disagreements. But to yell and scream, talk about walking out and divorcing? We never did that. Never! The one time we thought of calling it quits was when we were planning the wedding. I had my wedding binder and my husband could not have cared less. I stormed out of his house and left. And yes I still remember. Oh I was so mad at him then! Ah, to be twenty five with no kids again.

Becoming a MOM is the BEST decision I ever made. I am so thankful and blessed to be their mom. I think I am always going to be scared for their future until they are older and living their life, especially because of Autism and Apraxia. I wish I knew with certainty that they will be ok, that they can live independently, have a job, to have a happy life.

Nowadays, everything is so different but the house is full of giggles, laughs, cries, and craziness! Life is what you make it. When life gives you lemons, make lemonade. What I am trying to say is life isn’t perfect. What life is? But we are both of us slowly learning to find a new normal in our imperfection and hopefully we both grow old together and raise our kids together.

2013 summed up in a couple words was: miscarriage, arguing/shouting, apraxia diagnosed, expelled and discriminated, regression of skills, hating school, cats sick and dying, worried about my health and my dads. I don’t know about you, but I am glad it’s a new year. As Michael Buble would sing: “It’s a new day, it’s a new dawn, it’s a new life. . .for me.” (Yes, I'm a HUGE fan. We go to his concert each time he's in Philly. He puts on a Great show!)
 

Happy New Year Folks! Hope 2014 has good stuff for you! Let's make it a great year!

Holiday craziness

@2013 Twinglemami in Autismland
Xmas Eve, 2013

The holidays were here and gone. We survived Xmas Eve at my parents with extended family present. True we spent 30 minutes hiding and fighting upstairs in the dark away from everyone. I think we scared my cousin and his girlfriend so badly that they may never even think about procreating together should they be thinking long term. Then Xmas day time with the in laws. That's at our house so it goes much better. We try to time things right so the kiddo doesn't get too overwhelmed. Something as simple as knocking on the door sets all 3 off. JD runs screaming with anxiety up the steps to hide and hover, the girls get riled up and start screaming and running, that sets him off even worse, soon its one big ol crazy.

Honestly, no one in our family truly gets how rough the holidays are for us. Holidays he's so hyper, so out of control. How? An example: His last day of school before the break-- horrid. It was PJ day and breakfast with Santa day at the school, parents got to visit and it was hectic.It was 1 huge ol' melt down from 9-12:45 p.m. until I said we're done, let's go home. And that was with both me and his aide there! I think sometimes extended family forgets that JD's coping skills get worse in crowds. And by crowds I mean family and friends. Sorry but its true. A crowd is a crowd, doesn't matter who makes it.

My favorite part of the holiday is Xmas morning, when it's just us. Hubby, the kids, and me, all in PJs and we watch the kids attack their presents, catch the happiness and joy of being a kid, where I don't worry about autism or overload, I just let all 3 kids be. It's our time to just be, where I don't have to parent (much) or try therapies (much). I love Christmas morning, it makes up for all the craziness and commercialization of the rest of the holiday. For those who believe, I hope Santa was good to you this year.

@2013 Twinglemami in Autismland
Xmas morning, he made himself into a present. My coatbox, perfect size for a 5 year old to play in.

Rain clouds keep falling on my head. . .

                Have you ever met that person who walks around with a little raincloud over their heads? And it’s always something. That could be anyone and everyone right? I mean this past weekend we realized we have a leak in between the walls. Like freaking  waterfalls! It was pouring down the walls in my bedroom. Now there’s this huge crack going from top to floor, cave in imminent, water coming into the room now. We had to clear out that corner and see what the damage was. Yuck!
               Sunday I was supposed to go to a birthday party and well life got in the way. Both girls had yet to eat dinner, no naps, JD had fallen asleep in the car and was having a meltdown of epic proportions, there in my bedroom ceiling is Niagra Falls, Philly style. The house was a mess and this past year came back to me and overwhelmed me. I kinda lost my shizzle and grabbed my car keys and escaped. I gotta tell you its been a flipping year.  WTF is next?! When is my flipping break coming? Because I’m trying really hard to keep it all working smoothly. But I don’t see that break anywhere! And why am I the only adult in the house that has to handle every crisis Alone?!

This has been a difficult and yet great year. I lost a good friend to breast cancer, I miscarried and so around October/November I thought, my baby would've been born now, we'd have a baby in the house if my freakin body hadn't let me down again. I thought it would be baby's first Christmas, his first Thanksgiving. I am convinced the baby was a boy. This year we learned my dad’s heart is failing, working at 40% only, we are putting down our 2 cats for diabetes and kidney issues. I am fighting a losing battle with keeping my esophagus. I know I’m headed for surgery in the Spring—flipping Achalasia.  Apple has started talking (approximations 2-3 word phrases), she is running and skipping, her low tone is improving! JD has mainstreamed into Pre-K, expelled, and now we’ve found a welcoming preK. He graduated out of speech therapy and he's so incredibly smart, thirsty to learn. We’ve got ongoing legal battles with his former school and the early intervention agency. I don't even want to think about how much we've spent on legal stuff. Cemily Peanut is blossoming. She's talking and singing and being a total girly princess girl. My life is blessed for being a mother to my 3. We’re dirt poor. Ok maybe not dirt, our floors are wooden. But really anyone with 3 kids and 1 income will know money is tight. Add in the “specials” and ya know it ain’t cheap! But we’re still circling the drain. The people in our lives are our friends and family who love and support us in however they can. I am blessed for having them in my life. I am blessed for the new friends who I have met and who truly understand. I realize this past year the good and bad stuff, it is all just life happening. So I can stop making myself to be the victim.

Yesterday while the girls were in their room “napping” AKA destroying their room in a giggle fest, they dropped their 5 drawer dresser on themselves. I ran in and lifted it off of them without thinking about my back, without thinking. All thoughts of breaks and waterfalls and a broken friendship, they didn’t matter. Thankfully the girls escaped with sore leg and a sore hand. The drawers they’d pulled out in stealth ninja mode (I didn’t hear them do it) managed to stop the dresser from really hurting them. I thank God for their guardian angel. I cried. I was so scared.

Life happens, the good, the bad. And I can either live it with a raincloud over my head or I can just say screw it, this is life, let’s live it. So do me a favor, if you see me with that raincloud making myself miserable, making myself the “victim” smack the back of my head. Life is good, I’ve got 3 beautiful children, a husband who most days I like and who always makes me laugh. I’m just going to learn to live it and deal with whatever comes our way. Can’t do better than that right? Whatever your new years resolution, whatever your state of mind-- appreciate life, live it, and make a promise to yourself to be happy, be positive.

The NEW new school year

So we start a daycare on Monday. JD will be in the PreK room with 4 and 5 year old typical peers. His aide will be with him. We’ll see how it goes and maybe this will turn into our long term solution.

Meanwhile our attorney is still handling the mess of the former religious pre school (AKA Limbo) --Catholic humor. and the intervention agency (AKA A##hats). --regular humor Once they heard I was attending the IEP with representation, suddenly it was postponed and I was strongly urged to attend without representation a handful of times. So here we are 2 weeks later and still no date. Yes, we’re working on it. It is hard to understand the retaliation games being played on a 5 year old. Yes, this is really the world we live in. Grown a## people acting like my 2 year twins in tantrums. The stress is annoying. Feeling like we can not control this and get this fixed is pissing me off. ALOT!

Yesterday when we visited the daycare, he cried once he understood that some of his old friends would not be there. Emotionally tough to try and get him to cope with all the school changes. I am sure he feels confused. My one singular hope through this mess of discrimination and unfairness is that he does not feel too much of it. 

We are starting over. I hope the ugliness is behind us. I just want him to be around other kids his age and I hope the remainder of this year goes well for him. My fear is that it will not go well and we will be “asked” to leave another place. I think if that happens I will keep him home with me and home school. It is not fair to him to keep subjecting him to other folks hatred and ignorance. 

Does it ever get easy? Being a parent means we make decisions, sometimes good and sometimes bad. I made a bad decision in sending him to the religious pre-k. I should never have tried it, I should never have believed that my parish would keep its promise. I am so sorry JD, I’m sorry I let you down buddy. Mommy is sorry.

Silver Linings

It’s been a rough week. My kiddo is dealing with such obvious targeted discrimination and he’s 5!! I am emotional: angry, sad, disappointed, furious, stressed.

I can’t post much about this as we’re exploring our options. Suffice to say I am so saddened that this is starting in Pre-K. For us, the only logical assumption, the only thing that makes any sense is that this is targeted discrimination. He had adjusted very well and we were seeing a lot of progress. Now I am forced to start the process all over again and desperately look for another place to put him.

Now they say we need to look at the positives during the bad times. If thing happen for a reason, maybe this is why this has happened to us:

• Nothing like a stressful hardship to occur for a married couple to reunite for a common cause, to realize that we are connected even when it feels like we are not on the same team.
• Maybe we’re done with all the nasty discrimination stuff after this (yeah allright, but a girl can dream!
• We’ll go to a better place—err let me re=phrase to a better pre-K. Sounded like someone had passed away for a second there. (oh c’mon it wasn’t that bad of a joke was it?)
• It was in some way meant to strengthen my faith. Whatever church I move on to might be a better fit for our family. We are certainly not welcome in our current one and it’ll be a cold day in hell before I step foot in that church again. 
• It could be worse!  (Well it could)

I got nothing else. . .if you have any positives out of this please share.  I could’ve done without this particular incident. I’m stuck telling a 5 year old that he has to go to a new school and no more seeing his friends. SUCKS big time.

Not More Food!!

It’s almost that time of year again for my seasonal depression where I go on my happy pills from now until oh March?  I think the holidays overwhelm me and I get depressed, anxious and what not. I don’t enjoy the holidays. I love Halloween, don’t have to deal with a meal, don't have to deal with much family, I get to watch the kids enjoy it. Win!!

I do not enjoy Thanksgiving or Christmas because they are BIG family events, sit down dinners, filled with get together’s revolving around what else MORE Eating! Do you have any IDEA how STRESSFUL it is to deal with the crazy family (c’mon they’re all crazy, everyone’s family is crazy, admit it) and then add watching to see if the kids are behaving too? Then I have to deal with the hubs anxiety before these things. Is it any wonder that I never actually EAT at these things. I’m either watching the kids, taking care of the kids, making sure they don’t aggrevate the hubs anxiety, or worrying about my F—ing Achalasia. Quite frankly I’d rather be home making playdoh or watching another episode of Caillou with the kids. I’d rather be reading my Kindle while the kids play in the yard, I’d rather be at Zumba sweating my butt off while the instructor is killing me with leg squats. I’d rather be anywhere but together as a family. I really would.

Achalasia—where Eating is never normal again. I’m going to put that on a tshirt! I’m tired of trying to explain to family that it’s not specific foods, its not consistencies, its not me being a picky eater, no the damn surgery didn’t cure me, No I’m not doing better. I’ve just learned to how to hide it really well and I know what to eat to keep weight on. I eat because I have to. But if I didn’t need to? I’d be the happiest of people except for those freaking spasms. I hate eating. I will always hate eating. It is a struggle to swallow food. It hurts to digest the food. Eating socially? Uggh, please, I’d rather go take a statistics exam. The dysphaghia, the pain, the discomfort, the sensation of choking, never knowing what’s going to set it off. Blah—no thanks. I try to enjoy this time of year, I truly do.

I’m usually in the middle of one of these get togethers that I realize, “Oh hell, I’ve become one of those moms where ALL I can talk about revolves around the KIDS or SPECIAL NEEDS. I have no clue what movies are playing, the latest fashion craze, what grown ups do? No clue. I can tell you about Obamacare as it relates to special needs or pre existing conditions. I can tell you what services you would qualify for in Philadelphia. Oh my God, I’ve become a terrible wife whose life revolves around her KIDS. Well shit, something else I should feel bad and guilty about. Sigh. Where’s the damn wine people?