Com'on Mama, Follow Me......

"com'on Mama, fowwow me..." Of course Asher, I'll follow you.... "Mama, a roar, a yion, a baby Asha, now" Of course I'll pretend to be a lion with my baby Asher, we'll crawl on the floor and roar, right now, I'll stop typing on the laptop and I'll join you. "mama, a yion, a baby a mama, a yion, a roar" Yes Asher, I'm the baby lion's mama, okay I'll roar with you. "mama?" Yes baby? "Mama a yov a baby, a asha, a yion, right mama?" Yes, baby, Mama loves her baby Asher, her baby Asher Lion, thats right...always. So we crawl all over the apartment, I'm sure the people downstairs hate us, but we crawl and we roar and we pretend to purr while rubbing our cheeks together and doing nose kisses. He is smart, he knows Lions purr, Lions do face kisses, Mama Lions love their cubs. We crawl we crawl, for over an hour, my knees really hurt, but we don't stop crawling, honestly, when will he chat this much again?...it could be days, and I want to watch him be a normal kid for a while even if some of it gets lost in translation. We crawl. Eventually we crawl into his room, he stops at his closet and says "oh no! Mama Stop!" Whats the matter sweetness? "a baby a asha, geared" Why is baby Asher scared? "oh no, a monstah, a get" Baby there is no monster coming to get you! "monstah inna inna dark" Baby there is no monster in the dark closet. (Tears) Okay baby lets scare that monster, come on baby lion, follow me, roar, lets scare that monster. So we look at the closet, we roar. The mama Lion's roar is fierce, the baby lion roars with tears on his face. We roar until he laughs and says "Okay mama, fowwow me" he brings me to the tv and says "Haf a duder show a rocket?" Yes baby you can watch Super Why or Little Einstines. Later that night Phill and I are in bed. It took hours to get Asher to sleep. He doesn't sleep well ever. And we hear him cry. We try not to react right away, we pray he puts himself back to sleep, and we wait, barely breathing. Fingers and toes crossed. And then, we hear it, a tiny roar, then a louder roar, then a fierce roar. And then nothing. A few minutes later, I check on him...fast asleep with a sweet smile on his face. Go away scary Monster or Baby Asher Lion will scare you away! And he did!

The A word

I've avoided updating this blog for a while. Partially because life has been so crazy, but mostly because I didn't want to admit that there is something big that we should share. It is hard to say out loud still, though it has gotten a lot easier, I find sometimes it is even more difficult to see it in writing. So here goes. Asher started talking like a normal baby, in some ways he talked more. He was happy smiley easy going from day one. People often commented on how happy he was and that they never saw him cry, how social he was, how lucky we were to have a happy baby. And then around 16 months that started to change. He would cry a lot more, he stopped talking altogether and was pretty much silent. He lost all his language. He stopped flirting with people, became impossible to take out to dinner, or in public at all. I recognized the signs of sensory processing disorder, so I called Early Intervention. They came out and assessed him and decided that he qualified for services under a receptive language delay caused by sensory processing disorder. And therapy started. Asher started speech therapy twice a week, OT once a week, and developmental specialty once a week. But in the meantime, kids his age were passing him in milestones, kids younger than he was, passing him. Even though he was making progress, it wasn't enough. We spent months doing therapy, he made progress, but it became clear that we were looking at a referral to the public school system for testing and intergrated preschool. So I contacted a developmental pedi to help me with that process. In March (2012) I brought him to the developmental pedi. She was nice, she played with him, but he didn't want anything to do with her. He was having a bad day. A bad week actually, he'd had an allergic reaction and an ear infection. I told her this....she brushed it aside. At the end of the meeting, she said "Lets have a quick chat when he isn't here, next week, you can come before you go to work" I asked if I needed my husband with me and she told me "no it will be quick" So a week later I went to see her 45 minutes before I had to be at work. I sat down and without saying anything to me, she slipped a paper across to me. It was a diagnostic letter. I looked at her waiting for her to explain what it said and she told me "Just read it" So I did. And here is what is said in a nutshell "Asher Cole is a child you meets the diagnostic criteria for Pervasive Developmetnal Disorder-Not Otherwise Specified, Autism Spectrum Disorder" Wait.....what? I'll give you a second, it took my brain a few seconds to catch up as well. I finished the letter and calmly put it down. Show time. "Dr. Please explain to me the diagnostic criteria you used to determine that my child is Autistic" Instead of answering me, she handed me a pamphlet on stages of grief. "Dr. ________, I really need you to respect the fact that I come to this discussion with a very specific set of skills. I would very much like to hear your reasoning behind this diagnosis." She recommends I see a grief counselor. This was the quick appt I didn't need my husband for. The quick appt that it was okay to schedule before work. The no big deal appt that would change my life, Asher's life, and Phill's life forever. So what did I do? I went to work. I holed myself up in my classroom, shut the door and cried for hours. I canceled services for the day and sat at my desk and cried, like an idiot. Days passed and aside from my sister, we told no one. Maybe this post should have been entitled "The D Word" because denial hit hard. How could it be that I did not recognize Autism when I work with Autistic children? How could that be? How could this doctor not understand that I'm not biased, I'm not in denial....I called EI, I called her, I knew something was wrong, and I've known for a while....but wasn't it something different that was wrong? Wasn't it? How could the world's happiest, social baby be Autistic? How? So I did what only a rational mother convinced she was correct would do, I talked myself out of it, I scheduled a second opinion with the world's best Autism Research Clinic (LADDERS) and told myself, "You'll prove her wrong, because she is wrong" Who the heck cares if it costs every single cent we had saved for our home? Who cared when we needed to know? And in the meantime, we made the developmental pedi take the diagnosis out of his medical record. Though she tried to assure me that people would not read PDD-NOS and think Autism. Personally I think she must think I am stupid, because people would most definately see or hear PDD-NOS and immediately think Autism. But I digress. We waited what felt like forever for the LADDERS appt. We brought him in, he was tested, we had the follow up. We went in thinking, this is it, we'll get the confirmation that we were right and we can move beyond this. But silly parents, haven't you yet learned that nothing in the life of your medically fragile child is that simple or that easy? Silly Silly Prideful Parents. We didn't get our answers. What we got was "We're unsure, he is very complicated, We've never evaluated a child like Asher before, we can't say for sure." And then she said it "I'm uncomfortable taking the diagnosis away at, the moment" Do you know what it feels to have your hope crushed? I do. I felt it in that moment. To my credit, I didn't cry, neither did Phill. We just sat and listened. Here is what we learned. At two years old Asher's overall cognitive scores fell in the age 5.5 year range....smarty pants. At age two he could recognize all upper and lower case letters, provide sounds for them, and string some of those sounds together...hyperlexia. At age two he could read a few sight words...every mom's dream right? He could count past 50, do some simple addition, solve complex puzzles, create complex patterns....we should be proud right? But all those things are no good when you have the receptive language of an 8 month old and the expressive language of a 12 month old. Sure he can spit out memorized words, he has no idea what they mean. What good is it to read if you don't understand what you read? His phonemic skills are great, his rote memory is great....yay early literacy....only again it holds no meaning, no way to be applied to anything useful. And then she did it, she gave us hope. She told us "I have never met a child like Asher, he has the brightest social spark I've ever seen in a child that might be on the spectrum, he has the best play skills, he has the most social interest. I want to see Asher every three months, I can't promise anything, but I can tell you a time might come that this diagnosis goes away" We learned something else that day. Asher Cole is one of the most sensory disabled child they had ever seen in that office. So here is the question of the day, What is the difference between severe sensory impairment coupled with language delays and Autism? No one has a clue yet, at least not for Asher. Is it possible to have sensory impairment and language delays and not be Autistic?....absolutely! Is it also possible to have both those things be indicators of Autism? Absolutely! So what do we do? ABA! Hours and hours and hours of therapy. More speech, more OT, Preschool readiness. Therapy Therapy Therapy. And we were lucky because we had amazing therapists. OT, Developmental Specialty, and Preschool readiness through Early Intervention, ABA through Beacon ABA, and Speech (very expensive private speech) Worth every single cent. But there goes any hope of home ownership for now. And slowly I began telling people, first my best friend, my close online friends who are like sisters to me, a few family members, but no one else. No mention on FB...well until now. We didn't tell people, because honestly we were scared they would judge him, judge us, treat him differently, not have high expectations for him, brush him off....and to a certain extent we let our pride get in the way. I'm no longer prideful, I'm ready to say it out loud. My precious little boy is special in many ways and certainly special in ways I didn't see coming. Some good news...Asher has responded well to therapy. His language has really exploded...thanks to the talents of "Emmy" who is Asher's first love and the best SLP in the world, and thanks to "Tessa" Asher's ABA therapist who is his best friend. All we hear about all day is Tessa and Emmy...sometimes he mistakes people in public for them and is so dissapointed when they turn around and they are not Tessa or Emmy. Poor guy. Since March we've spent close to 25 hours a week in intensive therapies. I've had to stop working. But we're making the most of the time Asher has left before preschool. But what a difference! Asher's expressive Language is now getting pretty close to on age level, and his receptive is at the two year old mark. If I ask him to stop, go get something, sit down, look at me....he understands what I am saying. He can answer simple questions like "How old are you?" "What is your name?" "Do you want this snack or that?" People used to say to me "When he starts talking, there will be times you'll wish he'd shut up" I can safely say that I will never get tired of hearing his little voice. Never. So life has been crazy. So many things that aren't certain, except that we love our little boy and will do whatever we can for him. All this craziness that gets coupled with moments of joy. The joy of taking your child to the play ground, watching him approach another child, look that child right in the face and hearing "My mane Asha, what nor mane?" You can't measure the hope and joy those moments bring. And that hope has to last a long time before another moment like it presents itself, but I'll take it, hold onto it, and let it guide me until next time. I'll leave things there. I've said the A word, Autism... and I've finally admitted to the world that my son may have Autism. And just a promise to Asher that I will not change the way he sees the world, but I will change the way the world sees him, the way the world sees my beloved little boy.

A Belated Thanks!

This year has been crazy! I'm a little late on my yearly "Thanks" post. I blame going back to work and enjoying Asher too much to have time to blog! Anyway, here it is a little late, but just as genuine all the same.

This year I am grateful for my husband and our little boy. Last year someone asked me if Asher just lights up our lives. I like the way that was put. Asher lights up my life. He is the light in a world that can sometimes be dark, his light is a constant reminder of hope and love, and what can happen if you just have faith and hold strong to those hopes. This year I am grateful that as a Momma who has a miscarriage disorder, that I was able to bring Asher into the world and that despite many setbacks, he is happy and thriving. I am also thankful for my husband, who works long hours, has endless patience, and does whatever he needs to do to provide for our family including staying home from work for a whole week while Asher was sick so that I would not have to call out of work at a new job! I am grateful that Phill understands Asher's allergies and sensory issues because he has been through them himself and that Asher can have a Daddy that can understand him because he has been through the same things and love him from that angle. It takes a lot of patience and empathy to be Asher's daddy and I think that Phill is just the right daddy for the job.

I am finding myself yet again, incredibly grateful for modern medical science. Over the year and a half since we got Asher's difficult diagnosis, I have had the pleasure of meeting many momma's on the internet whose kiddos have simular set backs. I am reminded every time they share a gorgeous picture of their kiddos, that just a decade ago none of these children would have survived. This year I am thankful that Asher has the talented Doctor's at Tufts Floating Hospital for Children and Boston Children's who make sure that he is happy, healthy, and whole.

I am also grateful that medical science can provide us with the information we need in order to plan our family, even if that means the answer is "No you cannot safely have more children" I'm glad I can use that information and make the right choices for my family. I'm also grateful that living in this decade means that our options don't "end" here. That "No" is just the first step on a different path.

Words cannot describe how grateful I am for my friends and family! For my sister Michelle who cares for my son everyday when I go to work like he is her very own child. Knowing that he is safe, being watched over diligently, and loved puts me at peace so I can focus on work while I can't be with my little boy. For my real life close friends, who get me, and support whatever I do. For Ali and for Aiden. For my sister's who have just recently come into my life...who are wonderful amazing women! For my Donna, who is the worlds best grandmother and the greatest friend and support I could ever ask for. And for my brothers who have both decided to make huge sacrifices so that we all may have safe lives. For Joshua, who has recently become a United States Marine and For Nathaniel who will be leaving shortly to serve our country as a Military Police officer. It has been an absolute gift to be their sister. For Addie, who continues to become an amazing young woman. I am grateful that she has direction in life and the natural talent to back it up. Next Great Baker? I think so! I am grateful for our extended family, who shares the ups and downs of Asher's difficulties with us and strives to maintain the patience that our little boy needs!

I am grateful for Kylee who is the coolest little girl I have ever met! She constantly puts a smile on my face and is one of the few people that can make me laugh until my sides split! I am thankful for Ethan James who is now walking and talking! He even says "Please and thanks!" I am grateful to be the auntie of such beautiful and sweet children.

I am humbly grateful to Early Intervention. I can't say enough for these amazing professionals that do not get paid nearly enough. For Asher's OT who can see past his sensory issues and truly appreciates the beautiful little boy underneath! For the hard work she has put in during therapy with him and the difference it has already made. I am also thankful to work with professionals who have been able to give us wonderful advice for Asher and have shared much needed resources.

I am grateful for my new job! I work with some pretty talented and amazing people in a very good school district. I am grateful for Phill's job and the difference we both can make in the lives of others.

And last, but certainly not least. For the friends who have become like family, the ladies that I mostly just see through the internet, but have had the honor of meeting in real life...and for those who I will most definately meet soon...you know who you are. I am unbelievably lucky to have all of you and more grateful that you could possibly know for the friendship you have given me!

This year, I am thankful for Hope.

Decisions Decisions, or Not

Friday morning I had an appointment with a new MFM for my fourth opinion on the yay or nay baby thing. I was hoping to go into the appt and get different news. But it was more or less the same "Its reasonable to say you shouldn't have more babies, but its also reasonable to say its worth trying again" Not helpful. What I did like about this doctor though is that she really did her homework, which included sitting in on a meeting with my liver team, a telephone conference between my endo, liver specialist, and OB GYN, and a comprehensive records review. She went through all my OB labs, all the labs I had at Beth Israel and even the labs from the rinky dink community hospital and the hospital I received all my care at for our first pregnancy. I was very surprised at how prepared she was. She also finally gave me an official diagnosis after looking through my labs and discovering that I did in fact have trace protiens in my urine catches early on in both pregnancies and that in both pregnancies I complained about severe headaches right about the same time. They weren't looking for them because I never had high blood pressure. She also pinpointed when my liver began to fail and when the IUGR started. She showed me all the numbers and how my GD masked the onset of Pre-e, which is why I fainted on the insulin and messed my teeth up. And long story short told me that I had suffered from Atypical Delayed Onset HELLP Syndrome. In addition she talked to me about how my FNH could grow in pregnancy and if they reached a certain size I could bleed to death or need and emergency lobal resection (Which carries a 30% fatality rate) And she was very frank when she told me that she could not assure me that I wouldn't die, although there is a great chance that I wouldn't, there are many case studies of mom's with my condition that have died.

She also said that I would need to square with knowing that I could be asked at any point to end the pregnancy and that Phill and I would need to be okay with that. Which I'm not. She did say that the "new viability" measurement is 19weeks. But I'm just not okay with knowing that the risk of having a micro preemie would be greater than 15%. The major bummer was that she told me straight out that I would not be allowed to go beyond 30-32 weeks because the last trimester is when FNH grow the most and when HELLP would kick in. So no matter what we'd have a baby in the NICU. The chances of me having HELLP syndrome again are about is like 20%. And the last bit of knife twist. The strain that a vaginal delivery puts on your liver is too risky, so if I did decide to have another baby, It would be strongly recommended that I have a c-section.

I know there is more, I can't think straight now. Phill and I have had a good cry. We've talked a little about harvesting eggs and sperm and putting some embreyos on ice just in case we ever hit the lottery and can go with a surrogate. But I think we're both knowing that we're going to have to look into some sort of permanant birth control sooner rather than later. Its just depressing.

Happy First Birthday Asher Benjamin

Asher's jungle baby party was a success. The kids were really cute all dressed up in their costumes! Asher of course wasn't too keen on his, but he had fun at the party which is all that matters.

Its unreal that our baby is already 1! Already walking and talking. Unreal. I don't know how many times I can say this without sounding like a sentimental parrot, but time is just flying now. I feel like I'm chasing it down, trying to hold onto each stage before he changes again.

One thing I have noticed, is now that Asher is one, a lot of people have started to ask me when we're going to think about another one.... So lets just answer that one now, Not for a few years if ever. So moving on....

I'll start going back and editing old entries with pictures at some point.

How do you Measure a Year?

In a little under a week my baby will turn 1! The stage he is in now is really fun! Hes really starting to talk now and hes walking really well. He wants to play outside and explore! I love it. I feel like I'm a better mom now that I get more sleep and he isn't eating every two hours.

But, I'm going to miss his baby days. Sometimes I watch him while he is sleeping or playing and I think "God, this kid is gorgeous!" and I get a little sad, because he may be my last baby and I feel like I didn't get a chance to enjoy his infancy because I was sick and then he was sick. Part of me wants to scream "Do over!" So I can have a chance to go back and just enjoy him.

Tomorrow I'm picking up pictures that Phill and I picked out for a photoboard that we'll display at his first birthday! And I know...there will be tears putting it together.

So here to my last week before my baby becomes a toddler....and I plan to spend it enjoying him!

Cathy

This morning my Aunt Cathy passed away unexpectedly. I had a job interview, so Michelle and Phill decided not to tell me until afterwards. Its a strange feeling to know someone is gone before you really know it. I don't know if that makes sense.

My Aunt had just written a nice email to me a couple days ago about missing us and wanting to see Asher Ben and how excited she was about his birthday. I just feel bad now that we never got to have that visit.

And my heart is broken for Fallon, Josh, and Jason, who have now lost both their parents.

We packed this kids up this evening and we all went to spend some family time at Fallon's house. Its all still really surreal, which I'm sure will change after the funeral.

So I just want to say this now, before I forget to blog later. I'm grateful for the good memories I have of Cathy. And I want to thank her for the things she did for me and my sister when we were children. For taking us in when we needed a home and someone to mother us. For always caring about us. Thank you.