Monday, July 14, 2014

Guest Blogger- Allison Trowbridge

Allison is one of the most uplifting women I've met! She is so encouraging and is always posting beautiful photos and insight and words. We met maybe a year ago and i was instantly drawn to her and her approach of dealing with this incredibly difficult task of parenting a child with ASD. She has a blog where she is just so eloquent and clearly gets her feelings and words across and i immediately get sucked in. She is a beautiful person through and through and you would be a better person to know her! Thanks Allison for guest posting!!

Q: What signs did you first notice in your child that made you concerned about their development? 

A: I am blessed with a beautiful and supportive group of people who love me and my child- since becoming a mother and since Luca's diagnosis, I have made it a point to weed out unkind people from our lives; we are extremely careful of the company we keep and the exposure that others have on our children. Luca also attends a special needs preschool, with typical children who serve as "helping friends," and I am thankful to say that we have yet to experience unkind words or actions. Insensitivity, however, has made its way towards us, usually in form of ignorance. Luca is just now getting to the point where words hold substance and meaning; he is just now getting to the point where he realizes how words feel and how words can make others feel. I try my best to make him feel valued and loved each day so that when those unkind words and actions do come his way, he has the ability and strength to rise above them, knowing his worth is not based on what others may say or do. 

Q: A question from a blog reader..."How do you as a parent handle other people who are insensitive and unkind to your child with Autism"

A: Take a deep breath, shut down the computer and close all the books. go rock your child or simply watch them sleep. say a prayer of thanksgiving for this beautiful life and pray for strength and guidance. I know you're scared. I know you feel like you're drowning; I remember how hard it was to breathe, and on some days, it still is. but you are here. you are his or her mama, and simply put: you got this. pray often and count your blessings along the way, however small they may be. take time to cry and grieve, but don't ever take your eyes off of the good. Autism may be a thief, but I sort of liken it to Robin Hood- it gives back what it takes. it may have taken a couple of years for Luca to learn to spontaneously tell me that he loves me, but oh the joy when those words grace his lips now. 

Q: What is the best advice you could give to parents who have newly diagnosed children?

A: the preschool that Luca attends is fantastic at accomodating his special needs and we have incorportated a lot of their tools and techniques at home. we have a picture schedule, sticker chart and a reward system- and structure. I try to keep my home simple and organized because we all function better that way. everything has a place and Luca knows where those places are. we don't have rooms overflowing with toys and excess. we sing and dance. we have quiet times. and we get as much fresh air as we can in a day. I also talk, a lot. most days I feel like all I do is talk and re-direct. I am also, just now, getting the hang of planning ahead and staying one step ahead of both my child and situations we may encounter. I'm cautious of noises and sensory stimulators. it takes time and energy; it's exhausting, but it slowly becomes second nature. in many ways, I love and appreciate the way Autism has transformed me- I'm more thoughtful, considerate and not nearly as lazy as I could be. My patience and depth of feeling love and appreciation has grown tenfold. 

Q: If you could ask a favor of or tell the general public (Non-Autism) something what would it be? 

A: please, teach your children about Autism. in order to do that, you much first teach yourself. and ask sincere and thoughtful questions. teach your children compassion and tolerance, love and kind words. teach them bravery and sincerety, and help them understand that even though we're different and our struggles are different, we are all made of the very same things- we're just put together differently. 

Please Introduce yourself and your family:

hello, my name is Allison. I am a wife, mama, homemaker, photographer ,writer, flea-marketer and hope-filled optimist who loves her family and is striving to live a joy-filled life, praising God for the grace and beauty He bestows on me each day. I have two children, Luca (5) and Adele (3).  
our bright and beautiful boy was diagnosed with Autism at the age of 3. 
our story is an ordinary one: high school sweethearts get married and nearly one year later welcome their sweet baby boy into their arms on a perfect day in May. a year goes by and life is sweet. six more months go by and life is sweeter still.
it isn't until the end of Luca's second summer that my sister quietly nudges, "Allison, have you thought about talking to the pediatrician about Luca's speech?" 
I answered her question with a tear-filled call to our pediatrician to ask some questions. Luca had just had his two year check-up a couple of months earlier and everything checked out "fine," so the nurses and pediatrican assured me that although his speech was slightly delayed, he was, afterall, "just a boy." and boys tend to develop slower than girls. the advice given: take a deep breath and don't worry; he'll catch up. 
a month went by and the nagging feeling that no one understands until they become a mama was rearing it's ugly head. I belonged to a group at the time, MOPS, and I remember one of the mothers talking about how her child had a speech delay and how she had contacted "Help Me Grow," which is our state-funded program that offers developtment assessments and therapy, among other resources, to families in need and children with special needs. for the next three months, we were visited once a week by two woman who have become dear friends of mine. they agreed with me; Luca did indeed have a speech delay. they also observed some sensory issues- the constant running and jumping, the need to "crash!" into everything;  and the fact that his diet only consisted of peanut butter sandwiches and macaroni and cheese. and then there was his lack of both eye contact and reaction to any verbal command or question; they actually thought Luca was deaf. 
a trip to our ENT indicated that they were partially right- Luca had 50% hearing loss from excessive fluid behind his ears. and he was tongue tied. I remember taking a deep breath- that's it. these issues must be the answers to the speech delay and general aloofness of our child. 
but three months after Luca's surgery to put tubes in his ears, remove his adnoids and snip his tongue, Luca's speech and lack of eye contact had only worsened. and then there were his tantrums; it was as if my little one was trapped inside a cage of frustration. these emotions came out in form of more crashing and grunts/noises/screams. it seemed the only things to calm him were car rides, long walks, big bubble baths. and laying on the floor for what seemed hours at a time, lining up his trains, trucks and cars. he would line them up by size and color; ignorantly, I thought it was cute, sweet and oh so smart of my boy. 
the word Autism was mentioned by Karen, our friend from Help Me Grow, as he was laying at her feet one day, at the end of a play therapy session, watching Luca line up his beloved toys. she reccomended getting a diagnosis assessment done at our children's hospital.
the diagnosis process is a difficult one, but it boils down to this: phonecalls, transfers and automated messaging systems, insurace companies, waiting lists and hundreds of questions, along with nosey psychologists and behavorial therapists who are most-likely fresh out of grad school and have no idea what it's like to be a mother, a parent. they have no idea what the word "discipline" means. no idea what it feels like to have to leave your cart of groceries at the check-out because of a meltdown or leave a family dinner because your child gagged on mashed potatoes and threw up. they have no idea what it feels like to hear your child say "love you" and then not say it again for a heart-breaking amount of time.  you are left wondering what in the world you did, as a mother, to get you and your child to the point of sitting in a waiting room with children who are rocking back and forth, flapping their hands and making loud and unrecognizable noises. 
I remember sitting beside my husband and  a cradled Luca on my lap in the waiting room, on "D-Day." I was watching this little girl, not much older than Luca, play with some toys. her mom bent down to tell her something and the girl looked at her mom, but didn't look at her mom- the child's big brown eyes were blank, like dark windows in an empty house. looking at her sent goosebumps up my spine, and I knew. I just knew- even before the words, "we are diagnosing Luca with an Autism Spectrum Disorder" came out of the young doctor's mouth. 
my son had Autism. 
I wrote this on my blog the week of the diagnosis: 
today is the first day, since my last post, that I haven't cried. and I am so thankful tonight for my dry eyes. since finding out that Luca is autistic, my heart has ached like never before. I've had my heart broken, lost friendships and loved ones, but none of those have resulted in a heartache like this. I've had a difficult time sorting out my feelings- but after looking back on the past five days, I've realized that a tiny death has occurred. and as much as I dislike using the word death- it's the right word to use. on Wednesday, after coming home from the center for ASDs, I talked to mom, who at the time, was falling apart more than I was. when asking her to explain her feelings, she said she was grieving. I was immediately taken back by that word, and even, momentarily, angry that my mom used that word. I came home and thought about that word: grieving. pretty soon, my mind just grew cloudy with sadness and worries, and my head stayed in that cloud for two days. on friday, when Karen (Luca's developmental specialist whom we met through Help Me Grow) came to visit, I updated her on Wednesday's appointment. as much as I tried to get through the update with dry eyes, I couldn't do it. and when asked by her what I was feeling about the diagnosis, I simply said, "I feel an uncontrollable, deep sadness." "it's okay, Allison. what you're feeling is normal. in one instant, a doctor whom you've only known for an hour has shattered your world. with one word, she's taken away everything you've imagined for your child's life." and then she said,

"in a way, it's like a death has occurred."

there it was again. the idea of a death. a death that I was grieving over. a reason for my mourning and my tears- a reason for my sadness.
August 2011

the diagnosis process is diffucult and tedious. it was a lesson in patience and humility; I had to set aside my sensitivity and defensiveness when it came to my son. it's heart-breaking to be told that there is "something wrong" with your child... 
but I'm here to say, it's worth it. the process. the diagnosis. the different types of therapies and diets and supplements. the IEP meetings. the constant, in-and-out work and energy put into raising a child with Autism- it's worth it. and it gets easier. I grew more aware. stronger. more appreciative. and my life is immeasurably more fuller now than it was two years ago. the I love yous, the scribbled self-portraits, the eye contacts and the hugs; the first time I heard Luca sing a song; the first time I saw him approach another child with care and laughter- oh goodness, it is so sweet.

Please check out her IG at @lucadele 

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