The Stories of My Children

I don’t blog often. Since this blog post will be shared by more people than normal , I would suggest to a new reader that you read my previous posts . There are only a few , and SO much has changed since my last post almost a year ago. This new post is inspired by a Super Mom. We’ll just call her ” mom to Aiden” . We “know” each other through facebook . She and a  bunch of other parents I have recently “met” have great FB pages ..pages that really GET being a parent to autistic children. I understand them , they understand me. We do draw strength from each other . If you read my older post on this blog entitled ” shitting rainbows and butterflies” you will see that as early as last year I felt all these other parents of disabled kids were sniffing some kind of drug that made them glad they got one with a spectrum disorder. Secret special club or something. Fast forward to now , and I have connected with real parents who are not afraid to let it all hang out.

Yes , we love our children more than anything..but autism is a struggle , it is scary . Very very scary. They get the uncertainty . Not the uncertainty that typical parents have..will he get into college? Will he do ok at sports ?Will my child be popular? Will she pick a good career ?Will she marry a good man?  Our uncertainty is different . It is dark if you let it be. Will they be able to function after we are gone? Will they know how to love someone besides me? Will they ever drive? Will they be in assisted living or will they be independent ? You ( typical parent ) get what I am saying I’m sure. If you don’t you need a soccer mom intervention group.

ANYWHO..moving right along ..mom to Aiden- whose page and posts have given me comfort , hope , ideas , and laughter, asked me to write to her about my kids and their story . So here it is. In blog form , because this shit is going to be loooooong!I suspect that only other parents of spectrum kids will read it through and I understand that too. No worries. It is as much for me and my new friends as it is for anyone.

I have 3 children that I love more than anything in this world. In age order :

Molly , my typical one. Well , truth is ,there is nothing typical about Molly. She is beautiful , wonderful , smart , outgoing . Her friends love her. She does great in Kindergarten. She is also quirky and has a very honed sense of humor and satire. She is my rock , she keeps me sane. And she has been unintentionally neglected . We are working on that and the improvements are already showing. We just did not give her the credit of being able to understand and to be ..in her own words..”disappointed that something is now wrong with the baby too” . What do you say to a 6 year old that says something like that? All the sudden you realize that shit , she had expectations too.   She expected everything to be ok this time , as did we. Heck the reason we had a 3rd for the most part is because we felt there was a chance Oisin may never live totally independently and Molly would appreciate having another sibling to lean on . Someone who might give her nieces and nephews ( hey Oisin might do that too , not discounting that possibility , just trying to let you into my head here) . Someone else to visit and possibly care for Oisin when she was tired or had it with him.

So , she dropped the “disappointed in the baby” bomb and we went on to explain that we are not “disappointed” IN the baby , but yes we are disappointed that it is obvious he has a long road of therapy and uncertainty in front of him too. I told her she has two brothers who have special needs. Which is a great way to say” disabled “to the world because it is so PC , but a terrible way to convey it to a 6 year old. All she heard was “special” . This lead to her ,out of character , acting up in class. When I really sat down with her and probed her brain deeply she finally took a big sigh and said ” guess I’m special too , and I need therapy” . Big palm face slap here. Of course it seems fun to her. They have cool contraptions. People with cool toys come to the house .They go to school and swing and climb into ball pits . Shit , Peadar has a fucking trapeze in his sensory room in his school! What kid would not feel left out of being special and in therapy?

Sat her down , forgot about all the PC nicey nice, and laid it on the line for her. They need therapy because they are not functioning as they should be. Oisin should be playing ball , having conversations with us , he should have an obsession like dinosaurs or something rather than kitchen utensils. Instead at 4 1/2 he is just learning how to look a person he meets in the eye and say “hi” . Shit Molly , this sucks?? Doesn’t it? Peadar should be walking , pointing to airplanes in the sky , saying momma dadda and about 10 to 20 other words. He’s not . That , Molly , is why Oisin gets a therapist after school  and why Peadar has 5 therapists coming in and out of the house all the time and why his “school” looks like an indoor playground/gymnastics stage.  At this point I am crying and so is she.

She got it though. She understood. Loud and clear. Sometime 3 weeks ago I was honest with my “typical” child , and she and I became a lot closer. Her improvement in school was immediate  and she holds her head a bit higher at home. She asked to take a half day to go watch Peadar get his therapy so she can learn how to play with him at home , to help. I said yes. She also noticed that Oisin IS getting better , he plays with her now , says her name , he hugs her , and he bravely goes to the second floor with her when she is afraid of monsters ( one advantage of lack of imaginative play ..no monsters under the bed) . She said ” my brother is liking me now , he is getting better from all that therapy he gets ” Yes honey , he is . Sorry I underestimated how it all effects you , it won’t happen again. I love you so much it makes my heart hurt. I promise I will never keep you uninvolved again.

Next -Oisin! ( pronounced OH-sheen)  Oisin was born healthy , seemed a typical infant. He did everything just fine , he was early on all his physical milestones. He crawled at 4 months . He walked then ran by the end of his 11 month. He smiled and played with us . Stuff was missing though. Nothing glaring , nothing that even the pediatrician picked up on. Just little red flags. It took too long to get his attention sometimes. He hated books , did not really “play ” with toys. He liked common household things better . He would carry around something like salad tongs as if it was a favorite stuffed animal. He did not point. I called early intervention when he was 11 months old because of those things. They evaluated him and said he was fine. He had about 5 words , understood some commands. They said to call back if he was not pointing by 15 months or so . When he was 15 months old ( and still not pointing ) he came down with the H1N1 Flu . It was that first year it was around. He was SO sick. Then he was gone. He lost his words , he stopped listening . He no longer went to the fridge when we said “yogurt” . He no longer shouted NA-nana when he wanted a banana. The doc said to give it a few weeks since viruses can knock it out of a toddler. Well , 8 weeks later EI was back and this time he qualified with flying colors. No expressive or receptive language to speak of ( pun loosely intended )   . On to ABA therapy! On to OT ! We were going to get this sorted by the time he was 3 so he could go to regular old preschool . He had no other signs of autism at that time. I do think it still would have happened without the flu , or vaccines , or whatever. I think the sickness just sped up his ASD timeline , the same way vaccines do it for others, if that makes any sense. I believe it is genetic and will happen anyway , just as soon as a trigger gets in there. Same way some who smoke get lung cancer , while some live to be 90. Genetics. Genetics can suck it sometimes.

Looking back now there were other things. He did not notice his big sister Molly . I don’t mean he stayed away from her and did not want to play with her , I mean she may have well been invisible. Now that we look back and remember , and now that relatives and friends feel comfortable being honest ( WTF is that about anyway?) , it turns out that every person besides me and my husband ( and on occasion my dad) might have well been invisible. We did not notice that aspect of it per say ..mostly because he was so affectionate and loving and playful with us..his parents. And my dad . He always has played with my dad.Now we look back and remember these things. We did not notice everything back then . Wish we did.

Ok , so , some kids don’t start talking a lot until they are 3 . Boys especially ( eyes rolling here..when you have an affected kid you meet throngs of people who know boys that did not speak until they were 3..or 4….or 20 , AND THEY WERE FINE .Sigh , they mean well) . We went to Ireland to see my husband’s family when he was 2 years and 3 months old and that was the first time people started noticing that Oisin was not noticing them. No matter what. They started asking and we acknowledged it and proudly said ” he gets lots of therapy and will be fine!”  Just to digress a moment ..prior to this trip to Ireland, ONE friend of mine , one , answered me honestly when I asked her if Oisin seemed ok. He was 16 months old or so.  She cared enough about me and my family to be brave enough to be honest and say she thought something was up. I love her for it. So if anyone ever asks you that same question , be gentle , be honest , and be ready to be supportive and listen. Odds are that is what they want , not to just be placated . Odds are , if a mom feels the need to ask , then something IS going on. Be a good friend or relative and be gently honest. Ok , back to the story.

Oisin turns 2 1/2 .Then 2 3/4 . Still no words , no interaction with his environment. We kind of worry now at this point..and we kind of got pregnant again.On purpose , but ….you know.

During my pregnancy his sensory issues started surfacing. Before age 2 1/2 Oisin had no “typical” signs of autism like hand flapping , toe walking , spinning , scripting ( repeating words without knowing their meaning or purpose) . He was just a late talker ..mixed expressive receptive disorder. Intelligent ,   normal to advanced cognitive skills . Liked to play with his parents ( up until age 3 kids often play side by side rather than with each other , so he was not late at that , yet..according to the therapists) . As he neared his 3rd birthday , it started. Noising , which is a series of whining noises and clicks and inappropriate bursts of laughter and stuff . Kind of like Leonardo DiCaprio’s character in What Is Eating Gilbert Grape .  The hand flapping started. Oh God , not hand flapping . That universal sign that screams autism. Severe head banging , toe walking , finger flicking , licking the rug , licking everything to explore it , sever temper explosions ( and no , your neurotypical 3 or 4 year does not have the same type of meltdown. They just don’t , ok? ) . This ALL arrived just before and just after Oisin’s 3rd birthday.

His 3rd birthday SUCKED.I had just given birth 18 days before to Peadar who promptly turned blue minutes after birth and then spent the next year in and out of the hospital . NICU , regular hospital , intensive care , EEGS , MRIs …but I’ll get to him later. I was emotional. Oisin was just diagnosed as being more affected than we originally thought ,and autistic. He was 3 and still not talking , not reacting when you said “daddy’s home” . He was feral , he was breaking everything in the house. I mean , like , the furniture man ,and the walls. Every day.

But my God did I love him. He loved me. That was glaringly obvious.Much to our delight , he loved the new baby! I never expected that gift from him. He was gentle.  He said “aww baby” ( his first phrase actually) . He went out of his way not to knock into him or hurt him. He willingly shared my lap with him and often fell asleep on my lap with him. Both my arms filled with baby boys. I can still feel how great that felt. To this day Oisin is still wonderful to his baby brother. I have no worries that he will so much as stub a toe on him. Because Oisin is sweet , that is why. So with all that goodness shining through the medical rodeo that was the baby’s first year , here is why Oisin’s 3rd birthday sucked.

Nobody called. Not one person. EVERYBODY called on Molly’s 2nd , 3rd , 4th birthdays . Not a soul called on Oisin’s. I knew why. He does not speak. He does not understand. He does not know what a birthday is , let alone that he is having one. So nobody called.As much as I love the people who did not call and understand why they felt the call with the mock ” is Oisin there?” was not necessary , I would just like to say thank you very much for making a postpartum mom of a difficult baby and autistic 3 year old cry. Thanks for that HUGE punctuation mark for the whole 3rd birthday milestone.

Except for my dad . He was here , and he went with me to Sports Authority so I could buy my son  a giant outdoor trampoline on his birthday. My husband stayed home with everyone so I could get out for a bit ( the baby was only a few weeks old and prone to turning blue and needing to be revived.How fun.) . My husband is a superstar too , in case I forget to mention that. But , this is my blog so let’s just talk about MY feelings hahahaha !

Digressing …Oisin..3rd year of life. He started a wonderful program in our public school that year. An ABA based full day, 5 day a week program. They have made progress with him these last 1 1/2 years years when nobody else could. They genuinely love and care for him. I can feel it , and I know it because Oisin happily goes into their arms. Props to them. They are the only reason I still live in town and will continue to live in town.People in the upper ( read , wealthier) districts in Bergen County are making noise about wishing their special needs kids could get in here. So the North Arlington Special Ed program people , all of them , should be very proud of what they have put together. This is not to detract from the therapists with EI. They have always been great and sincere , hard working. But the 3 hour a week program they set up for him was not working. There was only one therapist with EI that changed up the therapy with Oisin because she saw it was not working in its present state of rigidity ( ABA can be rigid) . She was the only one I ever saw get results with him. Yes , Laurie , if you are reading this, it is you! 🙂

As good as they are at Washington  , Oisin’s progress has been agonizingly slow until just recently. He was making progress though , I feel that without them he would have continued to not improve . His autistic like behavior has continued to emerge during his third year and into his 4th..but there are also so many improvements that I feel like we can survive ,and even have a shot at him having a conversation with us someday. He may need help doing it ( speak board or Ipad or something ) or he may not need help doing it. He is so smart , he is adorable , he has a sense of humor , he knows how to read emotion on people’s faces , he likes to play with other kids now if they initiate , and most importantly he is bonding with his sister Molly.   He hugs her , calls out to her , protects her from the monsters upstairs. He is starting to understand what we are saying to him ( oh , thank you God) . He still can’t understand or answer something like ” how was school ” or “did you go to school” ..but he can now repeat “schoooooool ” with a smile when you talk about it to him. 4 weeks ago he couldn’t. He is arriving , he is going to talk to us , I know it. The autism symptoms , signs ,stims , ritualistic behavior , severe hyper activity is still there but I don’t care. My son can now somewhat indicate he enjoys school when I mention it. Oh , and he is almost potty trained! He can also label all his body parts. He says “ears” with a strong Brooklyn accent. Adorable! ( no we’re not from Brooklyn)

Then there is this underlying fear that it will go away again . Like that movie Awakenings .Because he has made this kind of limited progress before only to lose the skill. This has a different feel to it though. It feels like genuine growth rather than a learned behavior. Fingers crossed .

He counts , knows his letters , his sight words , his colors , his body parts , his people. He says “Hi Grandma” now , he tries to make people laugh. That is such a good sign! He also obsessively plays with water , screeches out of nowhere , is severely hyper , still does not understand 80% of what you say around him , can speak to get his needs met but nothing else yet , he shuts out the lights after you turn them on over and over and over infinity…he pinches affectionately in an obsessive manner ( this will be the end of me – I hate being pinched) . But , he plays with people that come over now , he notices animals now ( never did before) . He strips. He is always naked at home. He only eats chicken nuggets , waffles , and fruit. He is brilliant at figuring out how things work. He is super athletic , super strong for his size . He can’t follow directions to play a sport yet , but he will.

So that is Oisin in a nutshell. On to the baby. Baby Peadar ( pronounced Padd-er) .

“That’s a boy” . I remember my husband saying that softly with emotion and wonder when they pulled Peadar out ( 3rd c section ). He was our surprise. We did not “find out what we were having” It was special . It was planned c section and very relaxed and beautiful ( the other 2 were emergency C sections) . I picked the radio station. He was born to “One Way Or Another” by Blondie . His dad announced his gender , his dad picked his name ( Peadar is Irish for Peter) . Peadar then proceeded to turn blue. The nurses brought him around and he was fine , but one knowledgeable nurse said ” this fella is going to give us a hard time I think” . Ok , not too worried yet. Babies pull that shit after they are born sometimes. On to tying my tubes while Angus Young belts out Highway To Hell ( I picked classic rock as my Pandora let’s give birth music station).

Things were ok for one and one half days. Peadar was nursing . He was alert , he was “sproingy” like a newborn should be. I gave him his 11 pm nursing and sent him back in to the nursery. Back to the nursery . That will haunt me forever. He had to stay in the nursery with the other babies because I had a C section ,and my husband could not sleep in the hospital because nobody would stay with Oisin , the autistic one , over night. This does piss me off because ,I mean.. he was prone to tantrums yes..but he was 30 pounds and not an ax murder or anything. He has never been violent towards a person. Just objects. But , everyone is afraid to have to watch him. So the new baby goes into the nursery at 11pm.

They bring him back in 2am . He is groggy and won’t eat. They tell me that he “had another one of those blue spells like he did right after birth” .Great. I feel horrible. He turned blue ( well , dusky gray according to them ..they thought he had died) and I was not there. I know had I been holding him I would have noticed, and I would have fixed it before he was pale and gray( I know this because we found out the cause later down the road ,and you can tip them out of it before they are gray around the mouth). The doctor checked out his vitals , he was fine , sometimes babies do this tricky stuff that scares us.

They brought him back to the nursery and assured me a nurse would be staring at him from that point on. He had no more blue spells , but he would not eat. He was listless . It was like a switch went off. They wanted to give him a bottle with formula because it was easier for him to drink than to latch , and they really wanted him to eat to see if he would perk up. I refused and instead tried to fruitlessly pump more than just a little colostrum for the bottle.  And this is where I will go off a bit on the breast feeding Nazis. Yes , breast is best and I believe that wholeheartedly. I also believe that nurses in the nursery are SOMETIMES too quick to try a bottle with a newborn to solve minor issues that nature will sort out , like jaundice. I was an indoctrinated , card carrying member of the Boob Nazis. So I would not let them “ruin” the establishment of breast feeding by stuffing him with formula. Well , I was wrong. They brought him in again after a nap, after another exhausting bout of trying to get him to nurse and latch again..and his blood sugar had crashed to TEN. He was in trouble. The lactation consultant who coached me to “not listen to the nurses” was not around..good thing because I would have slapped her. Note to all new moms. Yes , the LCs are awesome and knowledgeable , but sometimes ..well , often times actually ..the nurse has handled about 60,000 babies to the LCs 100 clients that she has under her belt , and her education is just a TAD bit more medical oriented . So be open minded to the fact that nurses are smart , and LCs can be wrong sometimes. Off my soapbox.

So the low blood sugar led to an emergency IV in my baby’s tiny hand , and it led to formula feeding ANYWAY because sometimes sick or early or otherwise not average newborns do in fact need more than what mom can supply .  He was admitted to the NICU. He had no other blue episodes in the hospital , but he was changed. He was listless. Adorable , but listless. His MRI showed mild PVL. PVL is damage to the white matter of the brain , due to lack of oxygen that occurs either during birth , in utero , or right after birth. His was mild , and the amount of white matter affected directly correlates to the amount of damage that is caused. So we were looking at mild here , ok , check.PVL is the leading cause or cerebral palsy. Low blood sugar so soon after birth can also cause issues. So , lots of unknowns here folks.

He came home on an apnea monitor , and I will spare you what will turn this novel into something the length of Finnegan’s Wake. Basically , he was in and out of the hospital for more blue episodes , one we called 911 for .Over  a period of 1 year. MRIs ,EEGs ,swallow tests .  Turns out he has vaso vagal syncope , which basically means he turns blue and faints when he is pissed off. It is usually the 10 months old and up crowd that develop it..he was young to have it , but he did. It MAY have caused some damage that day in the nursery because he was not quite full term ( 37 weeks) . Once a baby is full term they can withstand to lose oxygen for up to 2 or 3 minutes before any damage is done. Before that though , they are more susceptible.The super low blood sugar that the lactation consultant Rah Rah Shish Boom bah-ed us into was also low enough to cause issues , maybe.

Through his 6 months he was behind in motor skills ( Molly was too though , and she caught up fine)  ..we were already in EI and he was getting physical therapy. He was so social with everyone , smiling and engaging with strangers , with his sister , smiled at his brother..and these are all things Oisin never did , so there was a bit of relief there. Not for long though. As he grew his delays became more pronounced. They continue to become more pronounced. At 18 months old he has a global delay to the point that he is ,across the board , operating at a 6 to 9 month level. He is progressing , just slooowly.  Most notable recently is his attention is becoming hard to get. Uh oh , not this again

Well the truth is we don’t know anything with Peadar yet. At 18 months he is not pointing , babbling much , and he has no words and very little understanding of words. The thing is though , he is across the board 6 to 9 months..so his language abilities are not necessarily “behind” for a 6 to 9 month old. You see , Oisin had all these normal and typical abilities with a glaring lack of speech/communication. But Peadar , well , he is Global Developmental Delay ( ton ton toooon) .

If 6 months from now he is functioning at a 12 to 15 month level including speech like a 12 to 15 month old , we are in good shape. Hopeful at least. However if he continues to grow his motor skills but the words and sounds and understanding do not come , then we are dealing with whatever Oisin has with some additional delays thrown in..maybe caused by his birth episodes . We just don’t know. I’m afraid to say it or type it..but I do feel like his physical growth is starting to outpace his language skills . We just have to wait. We just have to work hard.

And oh ,we work hard. Peadar is getting 17 hours per week of PT , OT , DI , ABA , and a few other letters thrown in there.

Oisin did not even start therapy until almost 20 months , and then he only got 3 hours a week. Until he got to Washington School . Again , thank goodness for their program.

Peadar also has sensory issues through the ROOF ( remember , Oisin’s were not evident until age 3) . He postures , twitches , obsessively rubs his face on things , bites , pulls hair ( poor Molly gets the brunt of it) he can’t eat any solids , as he gags. He still drinks formula and eats level 2 pureed baby food ( for – you guessed it – 6 to 9 month olds ) . He does not respond to some noises , but freaks out over others. He hates his hands touched. We do feeding therapy , sensory brushing , deep tissue massage , sensory swings , ball pits .. the list goes on and on.

And I swear the unknown is the worst part of it all.

Hopefully the earlier start with Peadar’s therapy will make a difference? I don’t know but we are sure going to try , and we are going to keep going forward with Oisin , hard as we can.

If you read this book I just wrote either you have affected children too , or you really want to know what it is like to have one. Hope I helped impart a little feeling in any event. Thanks for reading.

Sandy

Shitting Rainbows And Butterflies , A Perspective On Autism Support

I have been meaning to write this post for some time now. It is difficult , as was my last post. A lot of people won’t like it , especially some people who are embracing life with an autistic child. This is a vent , only a vent , about a few things that get under my skin in this new world of “parent to an autistic child” that I am in.

It is , again , about Oisin’s autism. Or, his Mixed Expressive Receptive Language Disorder with Sensory Integration Disorder with probable severe ADHD to be determined. Whatever , it all means “damaged” .

I have reached out to several groups , read several blogs by other moms with similar children , joined play groups for special kids . They are all great , don’t get me wrong. Everyone who is dealing with it should reach out. Here is my chief complaint though – the focus of it all. They focus on the why ( lets spend TONS of energy vilifying whatever did this to our child), they focus on the specialness of their child( which I do too, believe me) , they focus on new  treatments ,  they focus on IEPs , they focus on being warriors for their children. This is all very important , VERY important. But , something is missing.

Missing are the topics of grief , disappointment , resentment , severe fear of the future . These are completely normal feelings to have when your child is not ok by the modern sense of the word . This is the big skeleton in the closet when it comes to the support offered to parents of neuro atypical children.

They are champions ! They are parents of a special child! They wonder at all the amazing things their child can do ! They are there to welcome with open arms any parent of a newly diagnosed toddler , to show them how wonderful and unique their child is ! That is all true and positive attitudes are very important, but to be only optimistic and all embracing of the situation?

Bullshit.

That’s right , Bullshit. Sure you love your kids no matter what . I love my autistic son more than anything in this world except for my other two kids ..I love them equally.

But I am grieving. I am grieving over no T Ball ,not  hearing ” mommy I have a boo boo” , not knowing who his favorite super hero is , not yelling J-E-T-S Jets Jets Jets with me no matter how much they suck , not reading him a bedtime story because he is not interested and I may as well be reading in Russian , not having him care about Halloween , Christmas , The Easter Bunny .

Yes , he is getting better , yes they all tell me he will do all those things and he will talk and listen and I have to work to believe them , and  I do..but he is not doing it now dammit , and it hurts. He will only be 3 once!I am grieving a toddlerhood my one child  never had. I challenge ANYONE to look me in the eye and tell me the wonders of an unfolding normal human being from the ages of birth through age 4 is not an amazing and wonderful thing..a time full of 3 year olds asking “why” questions , child like observations and wonderful spins on things , talking like Elmer Fudd. Talking. Learning to talk. Tell me any of those things are not a precious part of childhood that are very important to you all that have had children. I had it with Molly ..I know what I have missed with my much loved 1st born son. I look back at his toddler years as “before and after”. Before I knew something was wrong , and after. The “after ” part dragged on and on..from nagging feelings of “uh uh” to realizing something was up , to realizing it was not just going away with therapy , to realizing he had autism. I don’t have the same feel good memories I have with Molly. The way at age 2 she could make fun of her Uncle’s Dublin accent. The way she was THERE. I missed that with Oisin. It was nagging concern , then apprehension , then dread . Now I am in the acceptance phase , I suppose.

I want to tell parents it is ok to talk about grief even though their child’s future may be very hopeful , it is ok to have grief even though other kids are worse off.It is ok to express grief over your child’s condition..and it is NOT selfish to feel bad for the things you as a mother are missing out on. People will say “oh you only feel bad for yourself..look at him ( points to your child who is spinning wheels on his matchbox car ) HE is happy ” They make you feel selfish for caring about the impact it all has on YOU and for lamenting the lack of regular toddlerhood nuances , the exchanges between a normal 2 year old and his mother..that are not to be.

I mean , don’t be consumed by it. That WOULD be selfish. But to not acknowledge that you as a parent feel the pang of things YOU will miss out on is repressive and unhealthy as well. It is ok to grieve those things. It does not mean you do not accept your child . It is normal to be a little sad over it , for yourself. From a biological standpoint and an instinctual standpoint procreating is a self fulfilling act . It would be abnormal not to feel shorted yourself sometimes.

When a parent with the new news that their child is on the spectrum walks in to some room to be greeted by others who have dealt with it , here is a piece of advice to the mentors. Stop shitting rainbows and butterflies right out the shoot . Yes , be positive , Yes , it is a relief and it is great to hear the success stories of diagnosis reversal , kids who went to college despite being autistic , yes , look at Temple Grandin , yes Einstein did not talk until he 4 .

But please , acknowledge their grief and disappointment. You all feel it from time to time , you know you do.And you know the fear and the whirl of emotions..most negative , that accompany finally getting THE diagnosis after months and sometimes years of watching the obvious slowly and painfully unfold starting with an “aloof” 8 week old baby that you had very high aspirations for. You know it. Start from there , let it be heard , give it the floor. Rip it down to its foundation , then rebuild from there.

I am one to face fears . Face them down , acknowledge the worse case scenario. Let the demons out so you can deal. Anyone who has a 3 year old with this new diagnosis can tell you their fears – that their child will only graduate to assisted living as an adult . Will always need care, even after you , their parents , are dead and gone . And that is a real possibility . Very real , despite Dr Temple Grandin’s revolution of cow slaughter methods.

I think parents would be better able to face these fears , to vent , to let it all out , to adequately prepare for what life may bring with their child , if everyone was not so afraid to not be SO optimistic in front of others.

Which brings me to my next beef.

Did you know you can screw your child out of good assisted living if you leave them a good inheritance? Not much unlike nursing home situations.” Look backs” count in aid for the mentally disabled who are left behind too.  People need to talk about the dark stuff too.For the sake of mental and planning productivity. Geez , you plan for college from PreK up. But plan for something important like your autistic child existing happily in secure settings once you are six feet under ? Nah , they’ll be fine . They are special. The WORLD will embrace them and care for them just like you do because their light shines so bright…( voice trailing off here) .

It is important to talk about the real possibility of pit falls in the future. . Nobody talks about it though. You hint at them taking a bus to bag groceries until they are 65 and people will tell you a million success stories of artists and inventors and engineers .It is flat out “planning negligence”. It will rear its head in society one day when this explosion of ASD kids grow up. And there is an explosion. Look around you. The biggest group being affected are the new generation of toddlers. I have sent 5 moms to my favorite Developmental Pediatrician because their kids who were 3 or near 3 were still non verbal.  5. Think about that. Something is going on. It may be evolution , it may environmental ..it is important to find out , but there are other issues at hand.They need MORE therapy than they typically get in an IEP . More than they typically get in Early Intervention.

I was just talking to a therapist for the blind that works for Early Intervention. She said most of her blind clients even at the Pre K level have parents who are organizing and saving and learning about how to preserve their child’s future after they die and leave that blind child behind. Maybe I just haven’t been to the right groups or playdates , but the autism parents seem to only focus on finding answers and cures ..they seem sure some breakthrough therapy or drug or chelation something or another will come up soon and their kids will be functioning adults , a little quirky maybe , maybe a mad scientist…this is all GREAT. But you also have to plan for other what ifs. And there are plenty. Not one therapist , developmental pediatrician ,or neurologist has asked me about future planning. If my son had Downs , it would have discussed at length already.  Why? Because autism these days does not have a definite end  of growth and progress until near adulthood ( some kids become independent at the high school level even) , needing help for the rest of their lives is a “what if” that is pushed out of the hopeful parent’s mind for a long time. Therefore , the planning is all too often forgotten. Even best case scenario , if they are super high functioning or have Asperbergers  ..they are at much greater risk of not being able to hold a job , not being able to have a good marriage ,   falling into substance abuse. They need planning by you as their parent , for when you are gone.

Yet nobody talks about that in the future tense.

I remember when Oisin was first admitted to EI at age 2 because of red flags. I thought , well , they can fix autism now with ABA therapy and stuff and most are just quirky and super smart and we all knew that super smart weird kid in class well I bet he was autistic  they just didn’t know it then and now he works for NASA….. ( voice trailing off again) .

I thought that way , because that is the prevailing picture of the new face of autism. And I bet they are right 90% of the time. I hope they are ! But the lack of planning that I see from my autism parenting peers when it comes to the possibility that their kids will NOT be independent is staggering . I can tell you what happens to autistic kids who lose their parents and they no longer have them looking out for them. They often eventually join the throngs of mentally disabled homeless. YOU NEED TO PLAN FOR THIS STUFF AHEAD OF TIME EVEN IF EVERYONE TELLS YOU YOUR 3 YEAR OLD HAS A GREAT PROGNOSIS. Prognosis is not a sure thing. It is hope. Have it by all means , but not to the point where you shut out negative thoughts because HEY we all know about the power of positive thinking.

So if your child is on the spectrum , even if they have the best prognosis a child on the spectrum can have , do your child a favor. In addition to all the other research we parents of autistic children do ( I do TONS) , take a look at Planned Lifetime Advocacy Network . That will get you started. Squeeze it in to your dietary and therapy research. It is OK to plan for the what ifs.

I do think my son has a great prognosis and chances are he will learn to somewhat function normally in society , go to regular school , go to college , build a whole new type of airplane or something. .

But I have fears , I have resentment , I have disappointment , I have grief..and when people who have been there before you only talk about happy feely buzz words like “special” and say things like “there would be no art if not for autism” , they are making you feel like the most miserable pessimistic parent on the face of the earth. I want to scream sometimes ..and my favorite is ” oh , I would not change him if I could” ….I want to shout at them ” YEAH ,YOU WOULD CHANGE HIM IF YOU COULD ”

It is accurate and believable to say  you love them the way they are , you love them dearly , you embrace who they are , you will always love them and help them and give them everything they need , you find joy in the achievements even more because it is such an accomplishment . I genuinely feel those things about my son. I love him to death . I want him to be who he is. But this whole ” I would not change a thing” sentiment is crap. I would change a few things in a fucking heartbeat. I would change the fact that he can’t tell me what is making him so mad , what he wants , what he feels . I would change whatever wretched thing or condition caused this neurological damage . I would kick it to curb , take it out of his timeline  , step on it , light it on fire. I would love the opportunity to wave a wand and make my son normal. Who are these people who say these things that they would not “change them even if they could”?? How does that make other parents feel internally ? Gee , I suck , because I would change him if I could in a minute without hesitation.

People say stupid things , but for kind reasons .

Maybe I am totally wrong , and the other parents do feel this blessed and are genuinely super fucking ok with the situation. Maybe I am being pessimistic and grieving something I should not be grieving . I don’t know..I think the truth is if I paid a private practice psychiatrist to listen to my woes he would tell me the grief and disappointment and blinding fear is normal and the elation people express over getting a special child and thinking they got that special child because  “I am strong enough to handle it according to to the powers that be” is something people in denial say and feel.

I love my son. Here is a list of things that are true.

-I love him more than I love myself , that is why I want good things for him and that is why I am so grief stricken over his autism

-I feel bad for me , because I enjoy being a mother so much and I so desperately want to hear my son talk to me , to make ME feel good. What your child says to you is a barometer to moms on how well they are doing as a parent. When the words are missing there is so much uncertainty

-I would not trade my son for any other boy in the world , but I would change him if I could

-sometimes in the morning when everyone is still sleeping I daydream about him coming in and saying in a husky voice that only 3 year old boys have ” hey mom I want some pancakes” .  Then I cry .

– I watch my new baby boy with paranoia to look for signs in him too. I don’t think I can go through this again. What if I leave Molly with 2 disabled brothers after I am gone? What will it mean to her life. Remember Molly?

-I am optimistic despite the tone of this post. It really is just a vent . Enough experts have told me he has the potential and the feel of a child that will break out in sentences. But I can’t be too optimistic because the let down is profound. I already went through it slowly when it became obvious he was not “just a late talker”

-I love him to bits and the best period of my life will be when he talks to me. He is not in his own world. We are fortunate there. I want to hear what he thinks about everything

-I flop back and forth from being optimistic , depressed over it , ok with it , proactive over it , angry over it. All in one day.

-and most importantly , he is due home on the bus in 20 minutes , and I can’t wait to hug him.

Autism

I don’t know what else to call this post.I can’t think of anything creative where the title is concerned. The word has actual physical weight to it when it is directly affecting your child. I can feel it in my chest every time I say it. My 3 year old son was diagnosed with autism. We received the diagnosis after 2 years of searching and 2 years of therapy . His diagnosis was not given across the board. One doctor and one neurologist say he has too many social strengths to be autistic . They feel Oisin has a Mixed Expressive Receptive Language Disorder with Sensory Integration Disorder. A more recent doctor/neurology team we went to (because our insurance changed) said moderate to sever autism with a good prognosis.  Autism with a good prognosis is easier to say than Mixed Expressive Language Disorder with Sensory Integration Disorder. So , we will just go with that one heavy word..Autism.

I first knew Oisin had issues when he was 8 months old. He was very social. Loved his people. Smiled easily. There was something though. He did not belly laugh (he does now)He was not pointing , his babbling did not sound like regular babble ..it sounded like the sounds a deaf kid would make. Kind of like a Bruce Lee “wahhhh” followed by a few more vowels. He was not pointing. I’ll never forget the day I was at a red light at the intersection of Bergen Ave and River Rd. I could not get his attention. He was just staring out of the window at the river. I had to shake and hit his foot to get his attention . Finally he turned and smiled at me. It took too long . I knew it. I had a nagging feeling in my heart after that. Hard to explain unless you have been there. An exterior part of your brain says ” nahh , he was just fixated on _____” But  there is a spot in your brain and your heart that JUST.KNOWS.

I called Early Intervention when he was 11 months old because he still was not pointing or babbling much. He did have about 4 or 5 words though  . Mama , Dada , ball , banana , yo-yo ( yogurt) , apo ( apple) . He did not qualify as needing therapy or being delayed that first visit. He was seriously ahead in motor skills ( always was) , had age appropriate  emerging vocabulary , and he had RECEPTIVE language . That is the important part folks. A child who is speech delayed but “understands everything that is said to him” is much less troubling than one who does not understand either. So , he had receptive language at that time. He understood when they said “Where’s Mommy”  “Where’s Bo ( our dog) ” He said Hi and Bye. Good. They said to call back if he was not pointing by 18 months , get his hearing checked ( we did , 3 times. All was ok) and if there was any regression at any point , call them immediately.

Regression. Another word that feels like a 10 ton weight falling out of my mouth when I say it. When Oisin was 16 months old,  the family got hit with the H1N1 flu. It was the 1st year of H1N1 ..you know , the whole “media hype” on the danger of this new flu for which there was no vaccine ( in hindsight , I am glad there was no vaccine , because I don’t think we would have opted for it then, and I would feel such profound guilt right now) . Well , it was not media hype for us . It hit my son and changed him in an instant. I want to smack people who say that”anything” that sounds scary in the media is” hype” . Sometimes it is , and sometimes it isn’t. It was a bad fucking flu. Worse than the seasonal flus of recent times.

After his scary bought with H1N1 , Oisin lost his words. More importantly , he lost his ability to respond to words. His receptive language skills were gone.

The doctor told us that sometimes when toddlers in this age group get a nasty virus, they regress..but come back in a few weeks. By the time I decided he wasn’t “coming back” he was 18 months old and I called early intervention as instructed. This time he qualified as having developmental issues ..with flying colors. He tested , at age 18 months , to the level of a 6 month old as far as communication skills went. Way lower than his first evaluation at 11 months ,where he tested to his actual age level.

At this point I had done plenty of research and knew that a lot of kids seem to have a genetic predisposition  towards “becoming autistic like” after a bad fever and/or virus IF IT HITS THEM DURING A DELICATE STAGE CALLED 15 to 24 months. That was definitely Oisin. They were hints before..nagging “red flags” …but overall he was fine . Enter bad virus..BAM . Bye bye kid . See you again after 5 or 6 years of intense therapy…maybe

Incidentally , we were scheduled to get Oisin his MMR shot the week he got H1N1 ..so of course it was cancelled . I wonder had I got him his shot that week as planned , and had he got the bad fever reaction some kids get from it … and he disappeared..would I be one of the parents saying the MMR ruined their kid ? Probably. The truth though is that any major viral reaction in Oisin at that tender age ..whether from the MMR or from a natural occurring virus .. would have done this to him. The signs he was susceptible were there. Unfortunately he got that virus at a vulnerable time for these types of predisposed kids ( 15 months to 2 years) , and was affected. I believe that had Oisin dodged a major viral illness until post age 2 1/2 or 3 , he would have come through it ok without the “regression” .Ugly word indeed.

The rest of the journey with Oisin has had its ups and downs.

We have been seeing a wonderful developmental pediatrician since Oisin was 2 . I’ll take a minute here to tell everyone if you have suspicions about a child’s development go to a pediatric developmental pediatrician or development neurologist. Regular pediatricians are not qualified to diagnose these things. And teachers and therapists are by no MEANS qualified. They may “know the signs ” and voice a suspicion..but they are NOT qualified to say yes , it is autism ( or isn’t) Part of the reason for the explosion of autism rates is because of misdiagnosis. There are signs for autism..but signs do not mean the child is autistic. A tumor is a sign of cancer..but not all tumors are cancerous. Know what I mean? There are sensory issues , hyperactivity , metabolic disorders , genetic syndromes , and plain old behavioral issues…all which can mimic autism.

Back on topic – Oisin’s Developmental Pediatrician at UMDMJ and a neurologist  both said that Oisin had a sensory integration disorder coupled with a mixed expressive receptive language disorder of unknown causes . In other words  ..undiagnosed. For an ASD he was deemed to be too social ,  too much of an appropriate range of emotions , with no persevering behavior . He had too many positives. They both cautioned me that could change , and that many ASDs presented themselves fully around age 3.

That is what has happened these last few months. Hand flapping , other types of “stimming” , “noising” , are all rearing their heads. Also , a strange way of moving his eyes when he examines things. Lack of pretend play. He can break down and put back together a toy airplane. He just won’t pretend to make it fly. He does not know what holidays or birthdays are. He does not know he is 3. The concept escapes his attention. He has never called me Mommy. Instead , when he wants me , he calls out “Sandy” ..in an Irish brogue the way his father says it. That is called echolalia .  He can count easily to high numbers. He reads ..we know this because he will see the word “apple” and say yum..or the word “hat” and put the paper on his head. He knows , last we counted , 50 sight words. He is the type of kid who you know was the guilty one when you sit on a chair and it falls apart ..because the bolts were removed.

You see , along with his disabilities he has excessive abilities. This was pointed out to me by 4 separate sources who neither know or consulted each other on his case . I have been told 4 separate times that he is in fact highly HIGHLY intelligent. On this most recent evaluation that brought us the diagnosis , he tested much higher than age 3 at  cognitive and problem solving skills.

On his paperwork it says profound delays/disabilities combined with very advanced abilities in cognition , numbers , letters , and problem solving. Above average intelligence.

Here is the promising news . In addition to criteria for being put on the spectrum , there is also criteria to determine prognosis  .  Some functional words by age 3 . Check. Reading people’s emotions and reactions..check. Affectionate ..extremely . Likes to play with others..yepper( if you can get his attention..he needs to warm up to you first if he does not know you). He has , according to them , a very good chance of going to regular Kindergarten and eventually having a diagnosis reversal . They say he will be talking and understanding by age 4. They are more confident than I am , and I feel very guilty about that. I JUST CAN’T PICTURE HIM TALKING. I know they are right and I am just pessimistic ( I hope) . I think sometimes it is how we shield ourselves from heartbreaking disappointment.

Honestly , I could care less about diagnosis reversal , or getting into a good school when he is older , or any of that.

I just want to be able to converse with him. I want to talk to my son and have him answer me. Let him be quirky , weird , autistic , whatever. I just want to share things with him verbally. I want to know what he wants to be for Halloween or what he wants for Christmas. I want to know what sports he likes. I want to throw a football in the yard with him ( games is not something he gets yet either) .

They have all but promised me those things are in his future , because of his strengths . Good prognosis , remember? He may always be obsessed with numbers and academics. Maybe he’ll invent something. Maybe he’ll destroy something bad in the world. Maybe he’ll be a brick layer. I don’t care , I just want him to be happy.

He can be as weird and brilliant and whatever..I just want him to talk to me and tell me what he is all about.

Oisin is an amazing athlete. He is super strong for his size , runs faster than kids his age,  and has the agility of a 5 year old(tested at that level). This has been told to me by physical therapists and OTs. Not just a mom’s pride here. I have a Green belt in Krav Maga , and a Blue Belt in BJJ I have been doing martial arts since 2002..and I can’t hold him down to brush his teeth.  I can’t wait until he understands directions , JUST so I can put him in Brazilian Jiu Jitsu. He is , however , a gentle soul . His feelings get hurt when another kid is too rough with him. Ok , so maybe Gymnastics. Or Parkour. Or football. He already has Barry Sanders moves down pat. I don’t care! I just know he will enjoy sports , once he can follow directions.

Well , I just wanted to share a story about my son I guess. It has not been easy to talk about . It is getting easier though. I am very very proud of him. So that is our story right now , and my brag , and my heartache.

The Evolution Of Photography ( for me , at least) and RIP Kodachrome, we loved you well.

What does photography mean to me? Sounds like the start of a child’s composition assignment.

To give you an idea , I will start with what it DID NOT mean to me , up until January of 2008.

It did not mean digital. It did not mean digitally enhanced. It did not mean “photoshopped” . These things to me were quite the turnoff  to me and had nothing to do with the photography I knew.

Yes, I have a background in film photography. I took photography courses in my youth . I also was an accomplished artist.I took photography and art classes all 4 years during high school , and attended college level courses on both during my Senior year ,on my  High School teacher’s recommendation. I did musician and band photography , nature , still life ( the obligatory apple against the stark white background , looking like a planet rather than a piece of fruit ) . I liked street photography. Candid capture portraiture. You name it. The only style I did not touch on or study was child photography. I was one myself for the most part.

My influences? Well , my father was and is a photographer. He was also in the music business..as a photographer and roadie.  My stepfather who I met when I was 15 , is a musician and photographer as well. My inspiration however? Look at any black and white photo of Janis Joplin , Mick Jagger , Keith Richards . That was it. The street shots that influenced the world were also my favorites. The little girl running naked , fleeing napalm during the Vietnam War. A child traumatized post Hiroshima. The famous Afghan Girl that graced the cover of National Geographic. Anything by Ansel Adams. The fireman carrying the lifeless body of  little baby girl Baylee , after the Oklahoma City bombing. I will never forget her name or that event because of the Pulitzer prize winning photo that summed it all up.  Wagon trains with grim faces , a study of Abe Lincoln. THAT to me is photography. Not necessarily all happy stuff , but MOVING and most of all memorable. Defining. Photos that people throughout time will recognize.

As I left the comfort of free courses (either by public school or parental financed) , I got away from photography , and art.  Life took a bunch of turns , forgotten was my camera and my interest in photography. Paints forgotten , canvases unfinished .Hobbies left behind for less admirable new hobbies. But still , there was always that love of the art .The ghost of my instructor’s voices saying I had real talent, that I just needed to slow down but that would come with experience.

I became an appreciator rather than participant.

The whole digital revolution happened around me. I’m not from the digital revolution generation.I remember mimeographs ,hoping to be the student that got to run them off the press so you could sniff them all the way back to class. I remember no internet , no cell phones. Then throughout my early 20’s interesting gadgets emerged. I got my 1st cell phone in 1993 when I was 23 years old. It was in its own case ..you carried it in a canvas bag like a duffel bag. It did not take pictures.

Enter the point and shoots. I had quite a few cameras over the years. An Instamatic , a Nikon FM2 , a Polaroid One Step  ( many a work of art of mine on cheap instant prints are rotting in a pile of sticky yellowed photo albums in my grandma’s basement).

I worked in the security industry when Point and Shoots started becoming very popular. My first P&S was a Samsung model. It was a reward for hitting a certain sales number with Samsung Security products. I believe it was a 5MP camera. I really had no idea what that meant  , nor did I care. I gave it to my mother ( and she still has it , God bless her). I was buying disposable film cameras anytime I wanted to take pictures during a trip or something..and the disc that now came with the prints ( was it Kodak Easyshare??) was the extent of electronic picture sharing for me.  I believe I emailed a shot or two once or twice.

You see , I had this “opinion” of digital photography. That is was cold , technical , not really photography. If you didn’t smell fixer during the whole process you weren’t doing it right. I hated “photoshop” . I associated it with people doing neat tricks like putting their subjects in the picture with Jimmy Carter and Castro ..or “photoshopping” them at the top of Mount Everest and what have you. Parlor tricks , a part of everyone’s new obsession with computers. Not for me , thanks.

When I had kids, sure we started taking digital pictures. I was forced to move into the modern way of taking family photographs.My husband had a P&S ..a Canon A350 . Took decent pictures , though I hated the shutter delay and imposing flash  ect ect.

My father had more embraced the digital age. He had a Canon G12..then he got a Nikon D80 , the first DSLR I had ever seen or handled. It took him 2 years of prodding me to try a DSLR  , to get back into photography . I noticed his pictures were decent. They didn’t look like the pixelated digitized early editions the 4 and 5 MP cameras were putting out. They started to look like “real” photography work. By this time my daughter was 2 and my son was 1. Ok , I decided to go ahead and give this DSLR a whack.

The rest , I think , is a story that has been told before. Girl buys entry level DSLR to “take better pictures of the kids” . Girl realizes that this DSLR gives tons of freedom and creative license. Girl now does in fact care about the limitations of entry level DSLR and it’s partner , the kit lens. Girl is nice to husband…long pause…girl upgrades to pro camera…girl is nice to husband again…long pause…girl slowly but steadily adds to pro glass collection.  Girl is now has now officially reignited her passion for photography and has decided to make some money out of it. Because you can only get so much for being nice to your husband.

Enter the post edit. Given my prejudice towards garish photshop parlor tricks , this was the slow part of the learning curve for me.  I use to develop my own black and white work. Dodge , burn..check.check. I knew what that meant! Yay! This will be easy ! Not.

As I learned CS4 ,and later CS5 I realized that it was a large part of the art. I realized that the parlor tricks were just a small part of digital editing..something geeks do for fun , just because they can. As I learned I realized that now , because of the digital darkroom , you can put as much feeling and art into your work during post edit as you could while you composed the picture.No two people will post edit a shot the same way. I never batch edit. I like to do each one differently. I like to put casts on some , not others. If I ever get busy enough , sure this might change.

Not to jump around here , but – I use to love developing my own photographs. Watching as what I had visioned when I hit the shutter came to reality on the paper ( or didn’t) .  There were always fixes you could do..push process , dodge here , burn there ..then there was silk screening ( another one of my former passions, long forgotten)  . We still have boxes and boxes and boxes of slides , negatives , and contact sheets I did. Not too many prints though. Because only the special ones that you saw through your loop deserved that piece of not very cheap fiber base paper . By the same token , only the special color slides made it to print. But the slides remain..definitely to be revisited one day in my spare time. Maybe Santa will bring me a negative scanner.

I had assumed the magic of the darkroom would be lost with the digital age. But , I learned , it wasn’t. There is still the same excitement as you see something turn out the way you saw it originally..playing with sliders to bring out your vision. And the extra tools at your fingertips ..I mean , wow. Vibrance , filters , and plug ins , oh my!  Ok , sure , unless you have you very own small office  you can’t recreate the MOOD of the darkroom. The solitude , the smell of the chemicals . Anyway , I don’t smoke pot anymore and I’ll never hear a new Jerry Garcia song again. So that whole setting is gone in a lot ways .

Here is the irony..I formally thought that digital photography and photoshop had cheapened photography..but for me , it enriched it. How ? Well , a lot more creative license at a much lower cost for one thing. How many rolls of 24 exposure 10 dollar a roll film do you think a 19 year old can blow through before running out of money? Not many , I assure you. And if you shot color , add the lab fees for developing them.

I have heard that people who learned on film know more about the basics of photography ( light , exposure , composition) because they HAD to.  Sounded reasonable to me. I’m sure there is truth to that. But there really is a flip side to that as well. You see , by not being afraid to shoot tons of shots , to try new things ,to  experiment , to play , to be silly , to take pictures of EVERYTHING ..because it doesn’t cost anything to take a bad shot in digital..photographers actually have more freedom to LEARN and PRACTICE.

I wonder how many good shots I didn’t take with film because I couldn’t get it to meter good exposure for the lighting present and the film I had loaded. Why waste a frame on a shot with poor exposure or the wrong film speed and type that you may not be able to fix in the darkroom? Now , with the touch of a button, you can change your “film” speed ( ISO) . You can change your white balance setting.It  use to be if you were packing daylight balance color film in your camera , you were screwed to a horrible color cast if you moved it indoors or if it became overcast. Not anymore! No longer do you have to carry around envelopes of John Lennon glasses looking colored  filters.

I have also heard it said that” just anyone can become a photographer these days” because of the digital revolution.  Again , I think that is true..but not because it has suddenly become “easy” to take pro shots. I think more people can become good photographers  because once you buy the gear , it is free to practice and learn. Naturally , there are those who keep it on auto. That bugs me , yes. it means you are using about 200 dollars worth of the 1500 dollars you just dropped on that light proof box.

But , I digress. Sure having DSLRs at Sam’s Club opens the door to hacks. But it also creates more situations where people with a latent talent now have access to easy tools to explore and foster it, to allow it a chance to grow.

Jumping around again here – I recently bought a film SLR. It is a Nikon F5. It cost me under 400 dollars. 5 years ago it would have cost over 1,000 dollars. I hate to see how much film has depreciated in value in the minds of consumers. On the other hand..this makes it more affordable for me , and I don’t think it will go away in my lifetime.  I will always have a love affair with film photography..particularly black and white. Digital is close for me..very close..but not there yet. I think it will be one day soon. Still , the art of film will draw me.

So here I am , one year to the day almost into my journey of learning the new digital side of photography. I am one year into learning the complex science that is called “child photography” ( cue the thunder noises) . I have met humming birds that were easier to capture than some of my fleet footed eye squinting highly unpredictable toddler subjects 🙂 I think the funniest thing I have learned about baby photography is that you get them to be posable and sleepy by heating the room up so they are less active. That is how I use to catch my pet Python when he got out of his cage , he would sleep wrapped around the curtain rod..at 15 feet long , I let him sleep. If I super heated the room he got active and would come on down himself. So babies were the opposite..warm= hibernation. Of course my own children did not sleep well no matter what. But I digress…

I am enjoying every single minute of it. I am half way through the 2 year course at New York Institute Of Photography. I plan to attend The School Of Visual Arts non matriculated courses in NYC once the new baby goes to PreK. I can’t wait. At the age of 40 I have decided I want to be a graphic artist. It is never too late.

I have a runway show to shoot this Friday in NYC..after that the kid photography slows down a bit ( well , maybe a few boogie nosed snow sessions here and there.. a few indoor newborn shoots perhaps) . I think after this week I will take a commercial photography sabbatical and concentrate on my other( and true) photography loves – street journalism ,  wildlife.

And I think I will do that with my film camera. I will scan the negatives though if Santa brings me that scanner, and develop them in CS5 . Why expose yourself to all those chemicals??? lol

Heck , I may even render an oil painting out of my favorite works. Out of paint and on a canvas. Not in photoshop. Those digital painting effects kind of make me shudder.

Ok , that was my last word lengthy getting to know you blog post. Stay tuned for daily short quips and PHOTOGRAPHS. This is , afterall , supposed to be my photography blog 🙂

Attempts To Swing Dance And Fails

When I was 34 , my husband and I decided to try and have kids. Assumed it would be just a matter of a month or two once I stopped taking my pills. All those years of being extra careful..all those times I was worried because I had missed a pill in a cycle. Sure that it would have resulted in an unwanted pregnancy.   So surely , I would get pregnant right away , right?

Fast forward almost a year. No baby yet. A visit to a fertility clinic got me started on a barrage of tests..tests that showed absolutely nothing wrong. It was chalked up to my advanced age ( I can’t believe I believed the term advanced age at 34) . I was scheduled to start Clomid after my next cycle , we would first try artificial insemination.

The week before I was to start taking Clomid , and 2 weeks before  we were set to head to Val D’Isere France for a ski trip , we were in Lake Placid getting one last “practice” ski trip in before our big trip.Ah… Val D’Isere , France . The plan was  to land in Geneva and drive to France and the resort. To say I was mildly excited would be an understatement.

I injured my ankle that weekend on the Olympic downhill course at Lake Placid. Death Cookies , they are called. Little balls of solid ice on an otherwise pristine white double diamond course . I fell hard.

My friends and future husband continued to ski , I proceeded to the bar and had about 15 Bloody Marys and elevated and iced my ankle. Didn’t want it to be sore in France! My friends finished out the day skiing ..dinner was raw goat cheese salad and about 4 or 5 Vodkas . The next day we went home  ..for dinner I had sushi and 4 or 5 sakis. You all know where this is going , right??

Monday morning I wake up..waiting for “my friend” to show up so I can call the fertility center and get started on that Clomid. I decide to take a pregnancy test because I am a day late. There it was , that second line that means it is positive. Or was it? It was so faint. I agonized over it..did I see it or didn’t I?!?! ( This by the way traumatized me and has made me always buy the expensive digital tests that give you a “yes” or “no” ) I decide it is there and I am pregnant. I then run the last few weeks in my mind , particularly the weekend just past ,  “Lake Placid Weekend” as it became known. Surely this child would have fetal alcohol poisoning as a direct result of the weekend past..or maybe even perish because I had sushi and raw goat cheese! (She didn’t , and she didn’t)

Well , I was pregnant . With my Molly. First order of business? Cancel the France trip. I certainly was not going to go skiing in France if I could not drink wine or eat raw cheeses. Who would do that?!?!

Now , at the advanced age of 35 ( I chuckle to my 40 year old self here), I felt I had done it all. Plenty of escapades. Some of them I can still talk about in mixed company. A lot of them , I can’t. But , they were my life experiences and I felt like I fell into the category of someone who would not miss the the freedom of not having kids , because I had been there done that.

Besides , people didn’t need to DIE to become parents , right? I mean , that is what baby sitters are for. I wasn’t going to be one of those parents who won’t leave the baby until they are at least 6 months old , and then only with a grandparent or sister. I was going to find a good sitter , and I soon as I felt well enough after giving birth ..6 weeks tops (more chuckling here)..my husband and I would do weekly dinners and drinks and still go do wild and crazy things. ( now I am beyond chuckles and into full hysterics at my naivety during that time) .

So , you have the baby and get a reality check. No , you in fact DO NOT want to leave your new baby with a gum snapping college student while you go out. Here is where I am very envious of people who have their mother or mother in law in town! Even still , I would not be leaving a newborn. I nursed. This is a 24/7 job. Have someone give the baby a bottle while you are out you say? Good plan..except that when you nurse every 2  hours you can’t just stop because the baby is getting a bottle.If you ever find yourself in a situation where you take a 4 hour hiatus from your usual nursing schedule , you will immediately understand why cows moo when you don’t milk them. And , no , the option of running a breast pump in the restroom of a bar does not make for a fun night. Nor does having milk blotches on the nipple area of your nice shirt for all to see.

I digress ( I do that a lot) . Before you have your 1st child , the way you *think* you will be and feel is usually the complete opposite of how you will be and feel.

But still..this was a JUST a hiatus I knew. Once Molly is older we can go out and do stuff.

Enter my pregnancy with Oisin , buying a new house that needs work , giving birth to Oisin , raising a baby and a toddler , and now a toddler , a Preschooler, and having a new baby on the way.

OK ,  hey , it isn’t ALL mom stuff in these last 4 1/2 years. Maybe I am exaggerating a wee bit. I returned to martial arts after Oisin was born ..5 months after to be exact. I hold a green belt and junior instructor certificate in Krav Maga. I achieved the rank of Blue Belt in Brazilian Jiu Jitsu,  and at age 39 competed against college age girls in a submission grappling tournament. I did not win , but hey I still tried. And I will try again after this baby. I’m going to keep going in martial arts , in both styles. In , oh , say , 15 or 16 months from now I will get back to both. I plan to get a tummy tuck since this will be our last baby. This time , when I lose all the weight and get back into shape , it will be mine to own for as long as I choose to be an athlete.

But what won’t come back? What part of the hiatus has become a permanent part of the past? The acting like a single person in my 30’s part, that I naively thought was who I was , and would resume again as soon as the opportunity presented itself.

Now with my 3rd pregnancy I realize that when I come out on the other side I will be a 41 year old mother of 3. By the time this baby is old enough to leave with a sitter while my husband and I go out I will be 43.

With the 2 previous kids I was picturing my husband and I going out to a posh NYC club once the kids were old enough to ;eave with a trusted sitter. Maybe hitting Vegas again..leave the kids with a grandparent for the week..or Hedonism..or getting in that ski trip to Val D’Isere. Drinking like fish in the lodge after skiing all day . Standing in line at a hot club.

But now , with time and a 3rd pregnancy, my mind pictures that scene in the movie “Knocked Up” where the bouncer won’t let the 2 ladies in because ” you old , and you is pregnant. I mean you old for this club..not for the earth or anything”. Funniest scene ever.

Besides , I don’t WANT to go to a club. I don’t want the music to be so loud I can’t talk to the people I’m with.I don’t want a hangover. I want to go to nice restaurants with my husband . Maybe catch a movie.

So this post is ultimately about paying homage to not so distant memories that I thought I would pick right up on until about , oh , a year ago .

I remember most a trip to Vegas my sister and I took. I drank too much ..got dehydrated , had to go to the ER. Went past the slot machine players in the Monte Carlo on a stretcher . As I went by and they stared I deadpanned ” don’t eat at the buffet”  . I was wearing martial arts shoes sticking out from under the covers of the stretcher. I was dead into Krav Maga. I wore mat shoes everywhere , unless I was in a cocktail dress. I was ..ehem..dating a few different men. I was making good money. I was always out on the town.

My sister and I had one epic night that trip. We were having so much fun we decided to write down all the fun and funny things we were doing that evening , lest we lose the memories in the ensuing vodka martini fog.

All things on that list are remembered to this day, such as  ” here , would you like a listerine strip?”( before giving a strip in a most unorthodox way to a cute wine distributor we met) …” I train attack dogs for a living” ( to the 2 German fighter pilots we met at the Piano Bar in resort NewYork NewYork..at least they said they were fighter pilots.One was named Sasha.)

There were many more quips on that list and we remembered all of them and still do…except for one. Written in very bad drunk handwriting as the last item on the list is the last entry we made that night..probably at about 4am . Neither of us has a shred of a memory that might help us piece that phrase together or remember what we had done to make us write that phrase.

It just says ” attempts to swing dance and fails”  We will just never know. Which , somehow , gives it the mystery it probably deserves.

That was 2 years before I was married and gave birth to my 1st child..it was 4 years before I realized I would never return to that life style.

There was a time right after I had Molly and was still relatively naive , where my sister ( who was married a year after I was) and I had vowed to go to Vegas with our husbands for her 5th and my 6th anniversary. Sans kids.

That is 2 years from now. I will have a 1 1/2 year old , a 4 year old , and a 6 year old. We’ll see..maybe we will make it there after all. Maybe we will be in a certain place and it will suddenly hit us why and where we attempted to swing dance, yet failed. But in a way , I hope we never remember. I just hope we do go to that trip. Even if it is 5 years from now , rather than 2. I would still like another crack at swing dancing…even if I fail .

How do you start a Blog?

Never saw myself “blogging” , really. In fact , had I not embarked on a photography career I may have continued on through life not knowing what a twitter was , or a blog. I have been informed , however , that law dictates a photographer has a blog. Plus , a new website costs too much. So here we are.

How to start? A bit about myself? Sure.

My life started as the The Wonder Years , then it was One Day At A Time. Emulated Fast Times At Ridgemont High ( or perhaps a touch of Trainspotting) for a rather long spell. Did the whole Sex And The City thing through my 30’s . Then…then…well , then I had kids so I have no current shows to compare my life to. Unless Dora finally gets married at 36 , has 2 kids in 3 years , turns 40 and gets pregnant again , I got nothing for you.

My daughter Molly was born a few weeks after I turned 36. 12 days after a Rollings Stones concert. Man , was I huge at that concert. I wanted to wear a T Shirt that said “Mick’s Baby” with an arrow pointing down to my belly. Vetoed , understandably by my new husband.

My husband. Pete . He was one of the Black Belt instructors at the Krav Maga school I was attending in NYC during my Sex And The City phase. Quirky , from another place far away ( a planet called Ireland) . An engineer. The type of genius that would fall down an open manhole while reading up on the latest findings in Quantum Physics. Thin , but can kick the arse of men twice his size. Droll. Sarcastic. Arrogant. My best friend , I love him.

Back to my kids. My daughter Molly was born at 34 weeks and a few days. A footling breach. The kind that would have been a double loss on little House On The Prairie ( by now you are thinking I watched way too much TV as a child) .

She was an emergency C section . They told me she had Downs when she was born. She looked like she had Downs. I thought she had Downs. 3 weeks later the tests revealed she did not have Downs. She was , in fact , merely squished from poor positioning and had low tone due to prematurity. More on that some other time. It gave me a lot of insight and courage , because it made me realize exactly how much a mother can love her child no matter what…and how every child is a gift . Today , she is beautiful and brilliant. At 38 inches and a whopping 27 pounds at age 4..she is my peanut. She is my heart. She makes me laugh and smile every day. She is so smart!

My son Oisin ( pronounced OH-sheen – think Irish furniture polish) . His birth almost killed the both of us. At 37 weeks , hoping for a VBAC ( vaginal birth after Csection) , I ruptured at the incision site from whence my daughter came. By the time I rushed to the hospital I was told an extra 10 minutes would have been the deal breaker. That night , Morristown Hospital logged 41 births. An average night was 7. There were babies in the halls! It was a big harvest moon and a crazy wonderful night . Oisin was perfect. He still is. In October of 2009 we all got the flu du jour . At 15 months , after the flu , he stopped talking.

He was given a diagnosis of autism , only to have it withdrawn. Too social they said. Too much eye contact for Autism. In my heart I still wonder though. He learns new things every day and at 2 1/2 is starting to speak. He loves , he is happy , he bangs his head when he is mad. He may have a sensory disorder , he may have apraxia , he will probably outgrow this with therapy..but he may not…I don’t care. I get him all the help he needs and he is growing and getting better. I would take 10 of him if God would give them to me.

Speaking of Oisin , he has called my first blog session to an official end.

Good night , and more tomorrow!

Hello world!

The cast :

Molly , my daughter. Born October the 12th , 2006

My son , Oisin , born June 20th , 2008

 

My husband , Pete .

Bo , our 2 year old Boxer/pit/hound mix

Greta , our 2 year old Mastiff