Thursday, June 30, 2011

To my husband

. My husband use to tell me I was crazy when I brought up the idea of Autism. Truthfully, I thought I was crazy too. When you are new at this, you don't really understand what they mean by a spectrum, you think you know, but you don't. You have preconceived ideas that autistic kids have no future and that this is the worst thing that could have ever happened to you.

When LP was diagnosed I wasn't particullary surprised and I was super positive, but my husbands face said it all. I understood, this is your son, the boy who was named after you, the boy who you told yourself would grow up to be the best athlete, on honor roll, perfect in ever way and some psychologist just told you that might not happen. Add on top that your son displays all the same behaviors you did at the same age.....the difference is that your son does not talk. What can the guilt feel like if you believe it was you who hereditarily passes this on, but with worse symptoms?


Today it was brought to my attention that several people thought that I was such a great mom for having to have this happen to me. That I must work so hard and be so stressed. That I put my kids first and spend money on toys, and therapies. That I must be so strong, like superwomen.....then I got the question, "does your husband ever let you get a break"

Dear friends.....I am not that strong. I know people believe that everything written on Facebook must be true....it's not. I post here and on my Facebook how wonderful everything is, how everything Is rainbows and unicorns and that my son will be one of those genius autistic children and be the next Bill Gates and I am the best mom and best wife and I can do it all. It's all crap.

The sane one is my husband. The quiet, grumpy looking husband who never doubts my son. The husband that pushes my son to do things when I baby him. The husband who works 54 hours in 4 days. the husband who brings me home ice cream after Working all day just because. The husband who let me spend money we didn't have at home goods to make me feel better (but then when I found out we couldn't afford it I got sad again haha). The husband who took care of the cleaning around the house on top of working the week before CPSE because I was in such a deep dark depression that no one knew about.

Remember behind every strong autism mom, is a strong autism dad.....just because he isn't front and center, doesn't mean he's not that mamas rock. I love you hubby.

Wednesday, June 29, 2011

Thank you Steve Jobs

I'm 100% sure that if there was no such thing as an iPad, I would never be able to attend a social function with myson with out crying.

Once upon a time in the land of Me before kids, I swore my child would NEVER play video games. My children would never be the zombies sitting at the table at a restaurant ignoring the waitress because they were to engrossed in their games. Ahhhh, that person we all were before we had children!

I had always struggled bringing LP out. No amount of coloring, trains or food could keep him sitting still or quiet. It was because of this that I became very secluded from the rest of the world. I spent most of my time in my house away from other people because it was the only place I could get my son to behave.

The day I it was suggested that I buy an IPad I almost fell off my chair. These people were crazy I thought, I'm going to get my kid an iPad as I sit here broke living in a tiny apartment living pay check to paycheck, eating Ramen noodles??? Like a small miracle, my mother decided to buy my son an iPad......and I sobbed, I wept, almost fell to the ground. Let me say, I was still skeptical of this thing, my son was beginning to be verbal so I didn't see how it would help him and not just end up being some expensive as he'll toy.

I can say 2 months later, my son can read because of the iPad. He knows his colors and shapes and grew the patience to listen to a book. He learned to trace letters and what items rhyme. He learned opposites, matching and what doesnt belong. And even though hearing "a doctor uses a stethoscope to hear your heart" scripted over and over again daily can grow annoying, at least he is saying something! The iPad helped my son sit through him great grandmothers funeral and helped say my goodbyes. It makes going to dinner a joy instead of a pain. And lastly it has let me type my blog on it after mY computer broke.....THANK YOU IPAD!!!!

Friday, June 24, 2011

CSPSE.......

CPSE = Committee for Pre-School Special Education.....I'm not sure how things go in other states since I'm new to all this but I can explain NY for you.  Between the ages of Birth - 3 your child falls under the care of Early Intervention which is run by your county (mine being Nassau).  Lucky for us, we live in the 3rd most expensive County in the country, we have the highest taxes and because of this kids in our area can get amazing services between the ages of 0-3.  When your child turns 2.6 years old its time to start the transition into the school district so that by the time they are 3, the county is no longer paying, but the district is.  Once again I am blessed to be renting in a town with high taxes :)  Before your child's 3rd birthday you must have a CPSE meeting to determine what services the district is willing to provide for your child.

Today was my CPSE meeting.  Now, because I know I was in a decent district and my son had preformed pretty bad on some of his new evaluations I was walking in trying to be laid back.  I knew what I wanted, full day pre-school with at least 5 hours of ABA at home.  I was warned that they probably would say no to home therapy, but I could ask.  I thought the hardest part would be arguing for home service, but no, the hardest part was being read the findings of my sons evaluations.  I knew he didn't do his best, I had read them over and over myself and absorbed it.  It wasn't until a complete stranger read every weakness my son had out loud, page after page that I literally felt like I was having an out of body experience.

When LP was born I knew I would be his biggest fan, but when people told me I would have to be his advocate I really didn't think this was for me.  Somehow during my Out of Body Experience , out came this person I didn't know.  Truth is, I am awkward and I hate to talk in public around people I don't really know about something I don't know everything about.  Today though, I looked up at a bulletin board, saw a  lady bug push pin (lady bugs have always been a God Wink for me), opened my mouth and out came everything I had to say without an ounce of shakiness to my voice.  Somehow I got through it, sounding intelligent and persistent and in turn got full day pre-school with the possibility of home ABA.  The possibility is huge, because they didn't say no.....they didn't say yes....but they didn't say No.


My advice for those parents going through this is to know that its stressful, but in times of stress, the spirit can do amazing things.  You never doubt your child, so never doubt yourself.  You are your child's voice and if you love that child, I promise the words will come out.  Fight forever and never back down.

Thursday, June 23, 2011

My son Typically loves his sister.......and typically knocks her over too


These are my children....Little Professor and Baby Diva. I had Baby Diva before LP's diagnosis. When I got pregnant with Baby Diva I just figured LP would grow out of these horrible behaviors and constant anxiety. I was convinced his speech would start soon considering here he was at 18 months and he knew the entire alphabet (who knew knowing the alphabet so young was a red flag?!?!) The actual day I found out I was pregnant my son tripped on his own feet and broke his tooth in half at a wedding...he screamed for the remainder of the night till he fell asleep in my arms. That day still pains me, that day was one of those days I would think "something is not right with my child".

A positive pregnancy test and all I thought was, how will my son handle this. My husbands response was "relax, you have 9 months to figure it out". For the next 9 months I freaked out...literally. Still making excuses for my sons behaviors as he became clingyer then ever and still no words. On the morning of September 29th when I started having cramps as I lay cuddled in bed with my little son, I remember thinking I wasn't ready. I wasn't ready for the sibling rivalry, the crying nights up, the jealousy, the idea of having to carry 2 kids (not sure why i was thinking that)

Exactly 12 hours from the first feelings of cramps my Daughter was born 7lbs 6 oz and loud as hell, she made quite a grumpy entrance(LP was born crying a little, but very observant, taking in everything, I remember thinking he looked like that baby alien from Men in Black). My husband brought LP the next morning....I was so nervous, how would he act, what would he do?? Well he tried to climb into her bassinet that's what haha


We came home and not one thing I worried about happened. He loved her, he would drag people to her and push their hands and make them touch her. I Nursed her and he didn't care, i carried her and he walked, i rocked her and he would climb up and make sure not to hurt her.

Magically it was perfect......but I can say that with therapy he has talking and expressing himself....especially in a big brother bossy way. Now that Baby Diva is mobile I hear a lot more crying in my home....along with words like, no, mine, go to sleep, go way, ew yucky baby. When I look over my son is usually taking something from his sister or pushing her to go play away from him. I suppose on a positive note, when I brought this behavior up to his therapists i was told this is what a typical 3 year old big brother would do.....Wowee, my son is exhibiting typical behaviors!!! :)

In the end, I've said it many times, LP needed Baby Diva. Her birth brought a gentleness to him that i had not seen prior. Much of his early spontaneous language was directed at her and for once, he has a real friend. I pray they stay this close forever.

How Dare You Tape Me

video

Two minutes prior to this LP was sitting on my living room floor singing songs like a little Angle.....I swear! I thought it was soooo cute so i say, "sing twinkle twinkle again for mommy pleeeeeeease" God Forbid you ask him to do anything....this is the behavior we get. He whines through the whole thing. His therapists say this also....its not that he wont do it....he will just scream through the entire thing.

Wednesday, June 22, 2011

I'm Supermom, an Autism diagnosis will never get me down......yea right

I wonder if its possible to be in denial for 4 months? Ok, maybe its not denial that i exactly suffer from, but instead extreme optimism. After LP's diagnosis, I thought to myself, "ok this is ok, we can do this" I smiled at the psychologist and said "That's what I thought it was, great at least now I know". I then began an aggressive Early Intervention program and read everything I could about Autism.

I never cried. I had the optimism that since it seemed to be a High Functioning form that my son would be perfectly fine. He would grow up to be the Aspie type, have a job, live alone, get married, have kids. I never have doubted any of those things in my mind until last week.

I told myself I would never get down, I would always be positive......that is until transition tantrum 500,000. LP has been through another round of evaluations, which once again placed him below what I expected. No matter how much he can read and memorize, the fact that he cant have an actual conversation with you that's not scripted puts him at a lower percentile compared to other kids.

In four months I never broke down.....the last 2 weeks I think I have broken down at least 4 times. I'm going to get all cliche now and say things like....I never pictured this as our life, I'm mourning the perfect child I wanted, parenting shouldn't be this difficult, I just want to go to a mom and me group with out my son running and jumping uncontrollably, I want strangers to stop staring, I don't want to be anxious about LP, I don't want to fight with my spouse about how to handle things with LP, I want to leave my son in Sunday school without disrupting the whole class, I want my son to understand that things are dangerous, I want regular discipline to work, i want to shower without worrying that LP has jumped off a chair or dresser......I could go on forever.

Don't get me wrong, in 4 months my son has gone from non verbal to reading. He has learned to sit and stand, give strangers hugs, give kisses, say Hi and Bye, ask for food or a drink, hold hands while we walk, love his sister to death, take a bath without crying, learn to love the pool.....and best of all, tell me he loves me.

Its a long road we are on.....i hit some bumps this week.....I'll be more optimistic tomorrow, i promise!

The Story of Diagnosis


On July 6th 2008 I was handed a beautiful 7lb 3oz baby boy. A boy, who I knew would have me wrapped around his finger for the rest of his life. My Little Professor (LP for Blog purposes) grew typically till around 9 months after he received a Flu shot (something I will go into another time). LP ended up in the ER a week after the vax with Bronchiolitis and low oxygen, a month after that he started vomiting on and off for 3 weeks with no explanation. At this point the chronic ear infection, which went on constantly for 10 months began, it was only till i stopped vaccinating him did the ear infections end.

It was at this point that LP's development rapidly slowed down. He never had the typical regression of skills like a lot of children with Autism do, instead its like time stood still. His body grew, but his speech did not. He learned to walk, but constantly fell or got hurt. He knew his name but never turned when called. He did risky things, without understanding the idea that things hurt. His behavior was beastly and regardless of the amount of time out, scolding or spanking he didn't improve.

The idea of Autism came into my mind when LP was 15 months old. I couldn't see how it could be true, he was cuddly and happy, he seemed so smart. I was told by doctors , friends, grandparents that boys develop speech slower, that it was normal, that the behavior was because of lack of discipline etc.

I believed it until LP was 2.5 and had him evaluated through Early Intervention. May I say, those who live in NY state are so blessed with the Early Intervention programs we have......if you are thinking of moving to get better services, NY is a good place to be. Only after 2 evaluations, one by a psychologist and a second by a Speech Therapist ,did reality really hit. LP was placed on the Autism Spectrum.......his Receptive Language was placed at about a 9-12 month level and his expressive at 15-18months......that was like a punch in the stomach. It was recommended he receive 10 x 90min session of ABA a week with 1 hour of parent training and 2 x 45 min speech sessions. This was another blow.....2x a day for 90min each session I would have strangers in my house, some days i would have 3 different therapist for a total of 4+ hours invading my personal space and bonding with my new baby( I had just had my daughter 3 months prior ).

So It began in February....and my son has progressed in Leaps and Bounds. Seems intelligence was never an issue, he is as a say a Little Professor. He has a knack for memorization and letters. He can read, and memorize about everything....today he told me to "taste the rainbow". ABA has been a blessing in terms of his behavior. Though his new found speech is a lot of memorized sentences and phrases and not as functional as it should be, I get to finally hear my sons voice. I always wondered what he sounded like.

Friday Is the day we meet about the transition from Early Intervention to our school district.....this will be my first fight of what I'm sure will be many. Wish me luck! New Chapters are always fun :/

Allow me to re-introduce myself my name is.......Mom

My name is Mom......Neurotypical Mom. The Mother of a soon to be 3 year old son on the spectrum and a (so far) NT 9 month old daughter. The Wife to a wonderfully different husband, who after much research, we believe is also on the spectrum.

Life has not been easy, but I dont think its suppose to be. Everyday is something new, good and bad. Even with the struggles, I would never change a thing......this is our life, this is our story.

I love you all.....

<3 NT MOM