by Sarah | Nov 4, 2009 | All About Molly, Autism, Failure to Thrive (FTT), Russell-Silver Syndrome, SID, Therapy
Last year I was afraid to try again.
Five months ago I took the leap.
Four months ago I was afraid to hope, but felt it creeping in.
Today was the big day. Technically it was the FIRST of TWO big days. We met with the Developmental Pediatrician. It was a scant hope, but it was my last ditch effort. The final specialist in a long line of specialists and the last thread of hope in a dim and dismal heart.
I got up and the crack-of-dawn o’clock and hopped in the shower. I got the girls dressed (In-Laws were sick so the 1 child at a time ruling had to be abandoned), fed and in the car. Along the way I stopped and used my gift card from the Moms Marbles twitter party last month (thanks, ladies I loved my mocha!!) at Starbucks and we headed up to the North Side of the city. We arrived perfectly on time and headed back for Riley’s appointment at the exact time we were supposed to be in.
And we waited. and waited. and waited. 30 minutes later the nurse popped in to tell us the doctor had gone to the wrong office. So we waited another 30 minutes and the doctor showed up.
It was worth the wait. It was worth the 4 months it took to get into her office to even see her. It was worth the hour wait. Why?
For an hour and a half – a FULL 90 minutes – she sat in that room. She never left. She sat there. She listened. She talked. She HEARD me. After years of frustration and fears…to be HEARD…that is the most joyous part of it.
She looked over Riley – took a full history asked many many questions – questions not even I could remember the answers to.
We have confirmations, we have suggestions…we are feeling hope.
I go back on Monday with Angel. At that point the doctor will give me a list of items from today’s visit where she’ll write down EVERYTHING we discussed today. Suggestions for therapies, help for insurance/assistance, suggestions and numbers for groups not just to support Riley (and Angel when it’s her turn) – but to help US cope. The adults.
Do we now have all the answers? Heavens, no. But this doctor is helping us define a path. For each girl, individually. She is listening to us.
And that…that is the most wonderful thing in the world.
by Sarah | Oct 24, 2009 | All About Molly, Autism
Riley has never been one for communication. She didn’t speak her first word until she was almost 2. Years of Speech Therapy have yielded a capability to say words and even full sentences. But actual communication? It’s a struggle and you’re never sure that she’s even actually being truthful – or just agreeing to get the conversation over.
When it is time to have a serious conversation with her, it’s like she instinctively gets the ‘confrontation’ vibe (even if not in trouble) and she shuts down. I wonder sometimes if we don’t need to resort to a complex series of clicks, whistles, and hand gestures to communicate with her.
The other night we had to have one of those. We wanted to talk about something – but to actually get her real input on it. We attempted a few formulas and eventually got a semblance of a conversation – consisting mostly of nods and yes’s or no’s from the Riley-girl – but a conversation.
We started by making sure she felt ‘safe’…sitting by Daddy w/ Mommy across the room – and sissy in bed. Daddy talking to her without looking directly at her. Occasionally I would ask a question in a different way.
A few words later, several head nods later…the conversation was over with Mommy having joined them on the couch and a snuggle session in full force. We were soon tackled by a little tornado of a monkey and all was righ twith the world again.
Have I mentioned how jealous I get going to blogs and seeing 2 & 3 year olds having true conversations and clever comments posted? Brandon was like that 10 years ago…now my girls are almost 4&5 and I still don’t have it with them…although Angel is getting closer than Riley (but Angel is pure goof-ball *G*).
But with baby-steps…eventually I’ll be having conversations with my daughter so brilliant that it will be ME not able to keep up…and I’ll be mystified that it was ever such a struggle to converse. At least, that is the dream.
by Sarah | Aug 28, 2009 | All About Erik, All About Molly, Autism, Fatherhood Fridays
The things we take for granted in our lives is amazing. We forget to stop and see the small miracles that occur every day, we just look for the big ones. I’m guilty of that when it comes to Riley. I thought she would grow and advance just like every other child. I didn’t want for her to have the problems I had to go through.
We went to the geneticist for over a year before we got a diagnosis. He wanted to observe her and watch how she grew before he said anything definitive.
After so many visits he was finally ready to tell us. The diagnosis was autism, specifically pervasive developmental disorder (PDD-NOS). My wife and I were stunned. It didn’t change how much we loved her, looked at her, or treated her – but I felt responsible. I was the one with all the problems growing up, and the lingering ones as an adult. My wife had a typical childhood, no major problems to speak of. Her first child was neurotypical. No, if Riley was ill, it was because of me and my blasted genetics.
Riley was still not talking, or smiling much. But she was playing “outside” of herself. Any situation where a lot of people were involved made her extremely uncomfortable, often resulting in a “meltdown” as we called them. She did not like for anyone to initiate touching or hold her unless it was herself. We saw a little girl locked inside herself, and we had to find the keys.
As Molly grew, we were enrolled in an assistance program that helped us find and meet her special needs. She met with various therapists each week to help her reach goals that were set forth to bring her development up to speed. She also was able to attend a special needs pre-pre-school , which she started out very withdrawn, but ended up comfortable and playing/learning/chatting with the other kids and teachers. My Riley was coming around, and I couldn’t have been prouder.
Riley began to talk, she had been saying some words, but now she was really talking. It was very difficult to understand her sometimes, at least for me. My wife spent all day with her and it was easier for her to pick up Riley’s speech. But she was improving. Her weight was always on the low side, but her height was average to tall. Her was growing, and it was long platinum blonde with curls at the end. Her hair was very fine, but it was healthy. Her appetite was increasing, but there were certain things she would not touch, probably due to texture or feel. She would give quick hugs, and sometimes we could kiss her. She was improving all the time, making big and small leaps in progress.
Today Riley is a little personality. She is still withdrawn and still has her “quirks” – but daily she reminds us of how far she’s come – and how much farther she is destined to go. I still struggle with what I’ve done right, or wrong – and with my own self-blame…but nothing cheers me like a hug and a kiss from my own mini-me. My Alligator. My Riley.
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I apologize for the delay in the latest installment from Archie!! I kept forgetting to edit it. This was the final installment in the ‘Real Men Don’t Cry’ Portion. I’m hoping to keep nudging the hubs to make posts on a variety of subjects – because I know he has a lot more to say! So Fatherhood Fridays are far from over!!
by Sarah | Aug 14, 2009 | All About Erik, All About Molly, Autism, Fatherhood Fridays
See Part 1 by clicking HERE
I never knew or met anyone who looked like me. Someone who shared certain traits. The connection was so amazing. I could look into her eyes and see myself, no longer alone. She was very special to me, in a way that most people would find hard to understand. I found redemption for past failures and a bright future was suddenly ahead of me.
Around 3-4 months old, Riley started crying after she ate. At first, we just thought it was indigestion, it would pass. But it didn’t. The crying soon turned into screaming, her muscles were tensed, and she was unable to be soothed.
A trip to the doctor soon turned into multiple trips, with fluoroscopes, tests, poking and prodding at my/our little girl. We were told that it was a simple diagnosis, silent acid reflux and it could be corrected easily with medication and close monitoring. That was okay, but she suffered for around three months in terrible pain and anguish, unable eat without it hurting her.
As she was getting better and able to eat without painful consequences, I started to notice that she was just not….right. She was now very quiet, withdrawn, never smiled, and physically she was wasted. Her doctor appointments were indicating no weight or height gains, even having lost weight at times. Her hair was lifeless and dull, eyes were glassy most of the time, and her only method of communication was crying in distress. She was drawing herself into a shell that neither my wife nor I could penetrate.
All of this time I was in complete panic mode. I finally had what I had been needing all of my life and she was slowly, painfully wasting away. Babies are supposed to be chubby and full, but she was bones and flesh. My wife and I supported each other as best we could, but I anguished terribly inside. I wondered if I didn’t get help for her soon enough, or if I failed to see the signs and in turn failed her.
I can’t explain how it feels to be so alone in the world, not really connected to anything. How many people take for granted that they have mother’s eyes, their fathers’ hands, that little half smile that started at the corner of their mouth just like their grandfathers in their youth. I had none of those things until Riley was born. Now I was in danger of losing that. Many sleepless nights, staring at the wall. What was to become of her, and me?
I know how selfish it sounds that my happiness was linked to hers, but that’s the way it was. For a while, we didn’t really know for sure that she was gonna make it. We met with other doctors, and then a geneticist. The geneticist was really able to help us with our fears and concerns. We didn’t like all of the answers, but he was honest and straightforward.
We bulked up her milk rations and worked constantly to improve her state of mind. One of her issues was revealed to be an oral aversion. She didn’t want food, she wouldn’t talk, and she would not let anyone look at her teeth which by this time were causing her some discomfort as they do all babies. But she never showed us or told us if something hurt, if she was happy, if she didn’t like something, nada. Zip. Nothing. The scariest for me part was not knowing if she was really in there or if she was gone forever. She looked like a little zombie most days. My heart ached and weighed three tons.
After several months, the added nutrients began to work, her hair started growing again, and had shine & luster to it. Her little body started to fill in just a bit, she would still be a skinny child given her parents, but we were okay with that. Anything but the bones that cast shadows. She was still withdrawn most of the time, but we began to see signs of life. She began to show interest in things outside of herself.
She could complete ten of the wooden type puzzles with letters, numbers, and shapes, at one time.
Amazing.
She didn’t so much play with her toys as she did organize them with razor sharp straightness. She walked at just under a year, which we felt was pretty good considering her delays. She walked on her tiptoes a lot, my wife thought she would become a dancer. She became frightened at loud sounds like motorcycles, hot rod cars, loud bangs or crashes, and would often cover her ears. She did like for the tv to be louder, so it basically drowned out other noise. It was difficult to get her attention; sometimes it seemed as if she were somewhere else. But we were slowly getting her back. I thanked whatever higher power that heard our pleas. I also began to relax, uncoil, and enjoy her.
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I am very grateful today is Fatherhood Friday and that Archie had stepped up with a post because I’m sick as a dog, and so are the girls. I will try to be back tomorrow – if not in time for my Weekly Winners – but there are no guarantees. I feel like death, just ask Archie.
by Sarah | May 8, 2009 | All About Molly, Autism
When Riley was very young she had a wonderful tendency toward needing to be held constantly. If you were holding her she was so content. She smiled brightly for you and coo’d…but only in your arms. If you tried to lay her down it was all over.
Then at four months old when the horrors of GERD (reflux) reared their heads we started to lose that spark. Our little sweet pea withdrew into a shell of near constant pain and shrieking. The smiles lessened, the coos faded…and by the time the GERD was treated and peace was restored, it was like we’d lost that spark that had lit from within her beautiful blue eyes.
Over time she grew and changed, but she was always withdrawn. Removed from the present. In her own world. At times it concerned us, terrified us…but we learned to accept it and cope with it.
Brief moments of sunshine and brilliance would break through the crowds. Her brilliance at puzzles when she was a year. Her love of the Backyardigans. Her quick learning of letters and numbers. She astonished us.
She worried us.
The autism diagnosis confirmed our fears, and brought new ones. But all along, we knew that the sunshine was in there. We knew that she had parents that understood as best as they could. A dad that had grown up with similar issues and fears – and we’d make sure she knew that we would always try our best to understand and accept.
Lately – Riley has been letting out more and more of that sunshine. Her closed off and withdrawn nature has been becoming more of a side part of her nature. In its place is a bright, sunny girl that is just brimming with personality.
When she gets mad or wounded or upset she still pulls back…and we accept them as part of who she is and help her learn to cope with them.
But when she is not mad…she laughs and giggles. She bosses her sister around. She bosses me around, the dog, her brother…her Daddy…anyone within hearing range.
She asks questions and gives answers. She has learned the art of conversation – and while not always witty – it is always sparkling with her smile and bright blue eyes.
Does she talk as much as a normal 4 year old? No…we haven’t reached that level yet – but she’s so much more than she was a year ago.Â
She’s amazing. She’s brilliant. She’s adorable. She’s my princess.
And I’m so thrilled to see the sunshine again.
by Sarah | Nov 8, 2008 | All About Molly, Autism, Crap
“Well what does she have?”
“Autism.”
“Oh, she does NOT! I’ve SEEN autism, and that isn’t it.”
This conversation happened on my trip home. It was my grandmother, whom I adore dearly and I hold no ill will toward her for it…but it reminded me of the times the conversation has happened in other situations.
When being told of her diagnosis after 2 years of searching and waiting her (special needs) teacher said, “Really? Well, I’m surprised by that.” Other people look at her and then at me with the huge look of doubt and you can practically hear their thoughts – She looks fine to me.
It takes all of my effort to smile and nod and move on into different conversations. I have to remind myself that these people don’t see her day in and day out. They don’t see her meltdowns (she saves those for us), they don’t see the way disruption in her routine makes things wonky, they don’t see her when she gets off the bus after school so exhausted from working at her therapies in class that she crashes on the couch for two hours.
They see a girl without the typical red flags, that makes eye contact, that smiles (at us) and hides from strangers, that talks and laughs once she’s familiar with the situation.
They expect what the propoganda shows, children ‘locked within themselves’. They expect behaviors and habits they see on news reports and fundraising sites. They expect an autistic version of ‘normal’.
They don’t know the years of therapy she’s been to help her become verbal. They haven’t watched her for 4 years like us, like her doctors. They don’t know that just 6 months ago she COULDN’T express her needs and wants. That six months ago the only calming activity when she got overstimulated was DPPT. That she does have moments where she fits into what they expect to see.
And I am grateful that they can see the child they do now. Thankful for Early Intervention, thankful for Developmental Preschool – that those two services have helped her become what she is today…and I am frustrated that people can’t see beyond the stereotype, that they don’t see that the spectrum is wide, and we happen to be on the higher-functioning end.
Look beyond the label, look beyond the stereotype…see the child and accept her for what she is. And if you’re going to take the time to ask the question, take the time to see the years it may have taken to reach that diagnosis…to see the months of therapy and what they’ve done to help the child…not look and judge because it’s not ‘typical’.
