Friday, November 20, 2015
I have a que of unfinished blog posts waiting to be revised and published but I can not let this one be one of those pieces left to rot in my blogger back page.
This week my daughter was Star of the Week. We got to fill out a paper about her and have her bring in toys and items to tell her friends all about herself and her interests. Woo hoo The end! No..... On Tuesday morning my Doe eyed beauty looked up at me and said " you need to make me cupcakes because I'm the star, I think you should make them tonight and bring them in Wednesday".
I looked at that Angelic face and said "Since WHEN do I need to make cupcakes for this too?" It was a mixture of embarrassment as well as annoyance, had I forgotten some special mom thing I needed to do in order to make my daughter fit in and if so WHY? Wednesday morning I asked her teacher if this cupcake thing was the norm only to have her look at me with eyes that said no, this has gotten out of control....... She said.... "no no no , if you want to you can but one mom brought them in one week and then every other kid brought them in after so believe me, if you don't it's not a big deal. Friday we are having a birthday so if you want you can bring another snack if Lia wants"
I long for the days before social media (even though its my guilty pleasure) and Pinterest. The days before I could be shown how inadequate I was. I scroll through Facebook seeing these amazing projects and birthday parties and feel like the worlds least magical mother.
My kids have never been to Disney, I don't have birthday parties at places, I don't go over the top with Santa, I don't like baking and On their birthdays they don't woke up to a living room full of gifts and streamers and waffles with ice cream. According to Modern Mothering I'm an A-hole.
Motherhood has become this Marathon which creates anxiety and insanity in all of us. I like to think we are running this marathon and we are hoping that when its done these kids ended up OK. Apparently in this day and age at the end of this marathon the kids not only need to end up OK, they need to be well rounded, popular, happy, successful, honor role achieving super athletes who are going to better the world and I had to do it all while Selling the Idea that the world is made of Unicorns and rainbow and hopefully I will be lucky I'm not dead at the finish line.
Everyday we have a damn activity to go to and this week I cancelled 2 of them because i just couldn't. I'm literally so exhausted I fall asleep in places not meant for sleep. A little over a month ago I fell asleep at my kitchen table scanning patient files for work. I fell asleep with my chin on my hand and proceeded to lose my balance, fall and crack my head on the floor. ER visit, CT scan ,concussion and 4 days of wooziness later I was back at the madness. I told myself I was going to slow down and it didn't happen.
I promised my daughter I would bring Pretzels to school as her special snack for Star of the week. As I grocery shopped i realized I forgot to send the damn things in. My mind was on work (I work from home) I needed to fax over and I completely forgot. So I ran o the pretzel aisle and bought some Start stickers, threw them in a pretty bag and ran to the school. That extra trip had me late to pick up my youngest at school so i had to run there. I ran home so I could then fax over work stuff and find paperwork my husband needed and as i did all this running I slipped on my rug, twisted my ankle, fell and hit my head on banister to the stairs.
I sat on the floor for a minute....i called my husband, my step mom and my mom. My mom said she thinks i need to slow down. I think I need to slow down too but is it realistic? I'm sitting here typing when I am suppose to be at a play date in 13 minutes and then in 3 hours I need to be at pack night for cub scouts, then i need to feed all the kids and put them to bed because tomorrow i need to wake up and go shopping for birthday gifts because we have two birthday parities this weekend...... and next week is Thanksgiving nonsense at school. Yes I know that was a major run on sentence but that's how i feel like my life and most moms I knows life has become..... an INSANE run on sentence with no breaths in between.
I'm not sure when the turning point came for this new motherhood we are in. Maybe it was when women went to work, when we had the choice on the life we wanted to lead....and then slowly the choice was taken away since we needed two incomes to survive. Having the two incomes didn't bring freedom or change women's roles, we just ended up more tired. I'm tired.
I think we all need a break....... who wants to form a Mommy Union with me?
Friday, October 9, 2015
I hear this all the time. You're soooooo laid back, you're sooooo ok, you're sooooooo just happy.
Today I cried. I cried because its October and I am already overwhelmed. Unless you read this blog.....you would have no idea I cried. You would most likely assume I am cheery , happy, laid back, even keel Danielle because.....that is who I am on the outside....and for the most part the inside too. Its those days though, the days it finally hits again and I lose it.....those days are tough and no one sees them other then my husband or one of the kids.
How are you so Nice/ok/loving/happy?....... First and foremost I'm a Christian. A Christian who put all my faith and hopes in the hands of the Lord a long time ago. Christians always say things are in "God's hands" or "you need to surrender" and it wasn't until Autism was in our life that I truly knew what that meant.
I don't know what will happen for Frankie in 10, 20, 30 years....I also don't know what will happen tomorrow. He is the definition of erratic. Everyday is a surprise in terms of behavior. It was when that started happening about 3 years ago that I learned what it was like to truly surrender. I will try my hardest, but tomorrow is always a NEW day and that can mean a positive attitude can go to a negative rather quickly.
It was through that....well THIS because I do this on a daily basis....that I learned to not sweat the small stuff.....or even the BIG stuff some days. When your life revolves around the mental health of your child everything else become trivial. My car makes crazy noises, who the F- cares, my sink is leaking, i don't care, I live in a 2 bedroom apartment with 5 people and i don't care because the money and time spent on him is more important.....because its ALL SMALL STUFF.
Today I cried because my son was approved for 1 hour of therapy 5x a week at a center IN new Hyde Park which is 30 minutes from my house. I cried because I have put him first for the last 5 years. Everyday after school I will have to drive my three kids a half hour each way for Frankie's therapy. Today my daughter looked at me and said "You promised me you were going to sign me up for Dance, you didn't, the ballet outfit you bought me should fit by now". What do I say to her? Do I say.....Frankie has to come first again?
I'm laid back but.....I'm not that laid back. I'm not super human, I have insane anxiety....i just hide it well.
Wednesday, October 7, 2015
I re-read a blog I wrote 2 + years ago... It was called "I cured my sons Autism with Granola Bars and juice made in China" . My Internet buddy Autism Daddy has cited that post (with my permission ) and I figured I'd update you all.
I wrote then how he looked recovered.....he still does....I wrote about inclusion Kindergarten....That kinda happened.....I wrote about mainstreaming in 1st grade....that did NOT happen.
I have talked about this phenomena that happens to us parents of high functioning kids, the one where we assume our kids will be ok by 1st or 2nd grade. You go through early intervention, you do preschool you see amazing things happening and you say....this is going to be a one way train to normalcy. WRONG.
Ok, maybe some people have amazing success stories. Maybe some have all their dreams work out. We on the other hand are still in a self contained class. Don't get me wrong I'm thrilled with his placement. He's in a 12:1:1 following typical curriculum. He even has it in his IEP that he can push into a a mainstream class once he can get his behavior under control.....but....behavior is 100% not in control.
I could go on and on about his aggressive behavior but that is a long story and a blog for another day.
Its a strange limbo to be in. He is in Cub Scouts with typical kids, he has 1:1 play dates with typical kids, he acts like a typical kid but.....the behaviors and impulsivity.....we are still working on that.
Still, 2 years after i poo pooed all those crazy treatments, i still look at them every once and a while. We use essential oils and Epsom salt baths. Do they cure? No. DO they calm? Yes. I called to look at NAET treatments and then kinda got sticker shock.
I don't need to fix him nor do I want to fix him but, I want him to be comfortable in his own skin. Time will tell, I'm just done having expectations. I mean I expect him to be an amazing boy, teen, man but.....I wont expect him to be the head of NASA ;)
With that..... He doesn't like Granola Bars anymore and the new juice we drink is actually organic but its Cheap because its from Aldi. Maybe that's part of the behavioral regression....maybe that Chinese apple juice was the Cure!
Sunday, July 5, 2015
Well not Little anymore.
I posted the following photo on my Facebook.....someone commented about how unsure I looked on the Left.
I posted the following photo on my Facebook.....someone commented about how unsure I looked on the Left.
I look unsure because I was!! Every birthday I write some sappy stuff and I'm sure the boy will read it in the future. I will give it a break this year and laugh at myself. I gave birth at 3:02 am.....they then took the boy to the nursery and I went to my room. They brought him back to me around 7am....
This was left in my room while I was in the bathroom.....
Literally....I came out of the bathroom and there was a baby in my room....no nurse....just this baby I had seen for 10 minutes at 3am before they whisked him away and I passed out (terrible birth story on that but that's another blog). SO I took the picture above...... Just me and the boy in the room on July 6th 2008.
I sat there and stared at him for 15 minutes or so..... looking back it reminds me of some national geographic documentary where a mommy animal isn't sure about its baby. I didn't really know what I was suppose to do with him. I paged the nurse..... She comes in and I ask her.... "what do I do with him?" She looks at me and says...."whatever you want, he's yours". "Do i pick him up?" I ask..... "do you want to pick him up?" She asks...... "maybe?"
So I picked him up....and THEN I fell in love with that little baby. We had a delayed attachment...well a few hour delay nothing insane.... because I was so unsure of myself.
I never let him go. I got reprimanded multiple times in the hospital for falling asleep with him but he was mine so like the nurse said....I was going to do whatever I wanted with him.
I let that kid sleep in my bed till he was two.....talk about not letting go ;) .
Happy 7th Birthday Frankie
You have grown to be more amazing then we
Tuesday, November 11, 2014
That Picture......These pictures have only started coming home in Frankie's back pack in the last few months. I'm not sure if he just didn't have the time or maybe his creativity hadn't peaked yet, but all these lovely drawings are new to me. Some I hang up and some I stow away in a special cubby he has that house crafts since he started school at 3.
This picture was different. I found it, like others before, and placed it on the kitchen table and smiled. Through out the course of the night he was obsessively asking for new crayons and after about an hour asked me for a stapler. I questioned what he was doing, then he told me he needed to show two children, in the mainstream class , that he too could draw and color in the lines. If you have yet to read my about section, my son was diagnosed with Autism at 30 months. Since then he has been in some sort of intense therapy and at age three began full time 8am-3pm schooling 5 days a week. OT, PT, Speech, etc. etc. He now is in a special Ed class and is mainstreamed certain parts of the day.
So here he sat, holding this picture, telling me about how he was told he was not a very good drawer and never stayed in the lines. He started getting upset because no one could tell that the orange figure on the right was a tick tock crock and how he should have used green but he was too terrible at coloring. That thing in the middle.....its the Jolly Roger, Captain hooks boat, but no one could tell because he was a bad drawer and he should be better.
I'll be honest, at first I was angry. I was angry that anyone would tell him he wasn't good. It took close to two years to get him to hold a pencil right and now hes stressed out about his drawing abilities. Of course I took a step back and realized that no Five or Six year old is going to understand the mountain that Frankie has climbed. The mere fact that he had enough imagination to think up this scene from Jake and the Never land Pirates and then tried to produce it on paper while sitting quietly in a mainstream classroom was a friggen miracle.....no one could know that.
My son began to cry the more I insisted that his drawing was amazing, he cried because he said he would never be good.....and then I cried. I sat on the floor of his room and cried and cried that he was upset and then I cried because I was glad he had enough emotion and realization of the world around him now that he could cry. I sat him down on his desk chair and said..... "let me tell you a story about a little boy I knew...."
I told him a story......It went like this...... "Once upon a time there was a tiny little boy. He didn't talk at all! He liked to spin wheels and never answered to his name. His mommy and daddy thought his ears were broke and he cried all the time. The boy liked to jump all day and when he got angry he would hit his head, bite and hit others. He didn't know how to play with his toys, friends or anything!............ He is now looking at me like I'm insane........... Then one day the mommy called the doctors who told her that the little boy had Autism. They told her that they didn't know what could happen. The mommy and daddy even got the boy an Ipad because they didn't know if he would ever talk. The little boy had teachers come to his house everyday for HOURS to teach him to play and listen and learn to talk....the little boy was so upset, he didn't think he couldn't do it sometimes and he would even try and throw tables........ Insert Wide eyed shocked look from my son now............... But the boy kept trying and trying and he surprised everyone, no one thought he could do the things he would do, some people didn't believe in him but his family and teachers sure did. He tried so hard to learn new things and he did great at all of them. Now he is doing awesome and still learning to do new things everyday!"........ Then I ask him.... "Do you know that boy?" of course he says no. So it came as quite a shock when I explained to him that, I had just told him the story of him. I said "There were days I didn't think I would hear your voice ever and people told me they weren't sure if you would say more then one word at a time but you worked so hard and now your a great talker. If you could learn to talk and write and play nice with your friends, I promise you, you will learn to draw".
Frankie said ok. I told him we would start working on learning to draw things tomorrow. I asked him what he wanted to learn first and his reply was "I think maybe a star"
He is my star and tomorrow I will show him how to draw one <3
Monday, November 10, 2014
Quick tutorial on how to get "Bed head/beachy hair"
OK get ready....
- Take Shower
- DO NOT brush your hair
- Put hair up in messy bun
- Pour a HUGE glass of wine
- Drink the Wine
- Fall asleep
- wake up
- Be scared of your reflection
- Undo Bun
- Put on a headband to look like you care
- Wipe left over mascara out from under your eye
- Drop child off at school.
The Neurotypical Moms Guide to Bed head hair....... just get out of bed.
You can throw on some sunglasses to make you look Hollywood
Sunday, November 9, 2014
He wanted to play a sport and soccer is what he chose. Coming out of an amazing year in Kindergarten and a relatively calm summer, I chose to put him in an intermurals team that was for typical children. I may have made a mistake.....no, I made a mistake.
That's me running between two fields, one with my four year old daughter and the other with my son. That's me missing my daughters first goals because I have to wonder if my son will hit yours. This is me looking like a basket case on the sidelines crying, crying because my son can't process and handle his emotions when your son says he's stupid.
There are days I wish I could hang a sign around my neck, or our necks that say "my son has Autism....yes i know he doesn't look it" (whatever the F that means) . I use to think the sticker on my car was obvious enough but, its not. You see my son, he looks like your son...except mine is talking obsessively about numbers. My son is socially awkward and anxious and your son picks that up.
That's me pacing up and down the sidelines, I see whats going to happen before it does. That's me yelling "Frankie!" . I'm sure half the parents think I'm some psycho helicopter parent, I don't want to be. I want your kid to stay safe, my sons new response to your child's unkind words it to kick him.
Your kid kicked my kid....because my son is "weird". You respond, "just stay away from him, stay away from that kid". That's me wiping away my tears. As much as bullying words hurt, parents telling their children to stay away from my son, that hurts just as much. That's me dragging my sobbing son off a soccer field for running full force into another child....for no real reason. Maybe you think I'm overly strict, maybe you think I'm being too hard on him. That's me dragging him off early because i can't stand to cry in front of you all.
That's my son.....walking to apologize to your son....who ignores him because he was instructed to stay away from that kid. Mine stands there defeated and yells, "I tried, they walked away"
That's us....walking off the field, defeated. I waited to cry till I thought my son couldn't see me. He saw me, he began to sob himself. He made promises I know he can't keep, we have one more day of soccer, he made me promises.
The next time you see people like me, a family like us.....give them the benefit of the doubt. Don't assume that child is bad, don't assume that mother is incompetent, teachyour children to be kind.
One....More.....Practice......God, let him get through that last practice, I'm going to have a positive attitude, because that's just me.