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

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