Wednesday, December 31, 2014

I resolve to be selfish in 2015...

I need to make some major changes after the hellish year that was 2014. When I sat down and really thought about how things have changed since having children I realized I lost a major part of myself when I transitioned into the roll of wife, mother and caregiver. Don't get me wrong, I would never give up those roles, they are who I am now, they are what drive me, they are everything I love. But I used to be full of life, happy, and I lived for Art. Any type of art,  I saw art and beauty in everything, everywhere I went. I used to photograph moments that really moved me, ones that I can still feel in my soul when I look back at them. I miss that. I miss feeling anything but sad, discouraged, frustrated, and scared. I am dying to feel anything positive and uplifting again. So I've decided to put an end to feeling bad, stop complaining about "losing myself" and finally make some changes, I've decided to take control of my life again.

My New Year's Resolution for 2015 is to put myself first.

It sounds terrible, I know. But my entire life revolves around AUTISM: Therapies, Dr Appointments, Trainings, Research, Social Security Meetings, DES meetings, DDD meetings, ALTCS meetings, arguing with insurance companies, (DOES YOUR HEAD HURT YET?) starting the new ABA (behavioral program) program, IEPs and IFSPs, Research (again, and more and more research), advocating, alternative treatments, plus trying to keep my marriage, house and life together on top of all of that. 

In all that craziness I have stopped caring for MYSELF. Doctors have been telling me this since Recker was born. That I need to put myself first, take care of myself so I can be  healthy (physically, mentally and emotionally) enough to care for my boys...you know the whole "Put the oxygen mask on yourself before you help your children and others" thing). So thats what I'm gong to do. Im going to force myself to delegate time, therapies, meetings etc to others who are capable of helping with the boys. And learn to say "No." I have such a hard time saying no to others even when I know I don't want to do whatever is being asked of me.  Ive realized that I need to start putting my feelings first. If I can't or actually just don't want to do something then I need to own that and be honest with everyone especially myself and start doing things I want to do.

I want to start school again!
I want to create art again!
I miss my camera, I miss the dark room!
I miss alone time! (even if it means just grocery shopping alone!)
I miss juicing and eating what I want! (not just what my picky boys will eat!)
I miss feeling and looking myself! 
I miss not being able to wear nice clothes because I'm afraid my boys will trash them!
I miss dating my husband!
I miss traveling (oh Mexico how I miss you)!
I miss working!
I miss laughing, like really belly laughing!
I miss girls nights!
I miss reading!
I miss being/feeling healthy!
I miss a clean & organized house! 
I miss being laid back & not caring so much!
I miss being fun, care free and spontaneous!
I miss "ME" These things are who I was and want to be again.

If I want to see change, I must make change. Im at a point in my life where I need to make big changes and this is going to be one of them. I need to make some time for myself,
for my wants & my needs. 
I need to stop neglecting myself, because I'm important too.




Monday, December 29, 2014

Tender Mercies & Blessings.

This year has been hard. Really Really Hard.

We started our year off with a horrific life changing event, and then Jeremy was laid off several times,  I was diagnosed with Fibromyalgia and Hashimotos Disease, and Ezra was Diagnosed with Autism.

I know this blog tends to be mostly about those horrible things, and in hindsight I kinda hate that. But at the same time, this is where I come to vent. I don't really have anyone I can go to to purge all of this crap so I come here. Its cathartic to put it out there in the universe, therapeutic to release it and not hold it in.

But as I was looking back this year, we have had way more tender mercies than we had trials. And as the year ends I want to focus on all those amazing blessings, look forward and up.


Some amazing blessings that my family has received this year range from "small" to huge, i'll list just a few (there are so many i couldn't list them all).

-We accidentally had money put into our bank account and when I went in to talk to them about it and let them know, the bank manager sat down with me to look at it. We chatted, small talk, about what I do for work, my family etc...anyways he fixed it and I was on my way. On my drive home, he called me on my cell phone and told me that he wanted to leave the money there for us. He told me to go do something fun with my boys and husband that weekend.

-I had surgery in June and the recovery was set for about 1-2 weeks in bed, but because I had just been diagnosed with an auto immune disease my recovery was taking longer than it should, it ended up being almost a whole month. During that time, I had so much help from my siblings watching my boys so Jeremy could get a break. So many amazing people from our ward brought meals, treats and stopped by to "babysit" me so Jeremy could run to the store.

-We were able to bypass an 18 month long wait list to get Ezra in. The nurses at the office knew how stressed I was and called me when they had a cancellation and we were able to get in two days later. This was HUUUGE for us. It saved us 2 years of waiting for Ezra to get services.

-We are so lucky to have such amazing family and friends and neighbors who are always willing to watch our boys when we need to run to a doctor appointment, grocery shop or just to get an hour alone to catch my breath.

-We saw such generosity when we posted our Go Fund Me account. People we don't know, long lost acquaintances, family, friends. Everyone was willing to donate what they could and it meant so much to us, especially when i would see they "shared" it on social media.

-We have been blessed with such a generous and understanding ward. They have gone above and beyond to help us any way they can. They are so patient with us and our boys, I couldn't ask for a better ward. We hope that things get easier in the next few months so we can start coming more frequently and consistently.

-We were blessed to have two amazing providers for Recker. We started with one and she was with us through some really hard times and Recker loved her, unfortunately we went our separate ways but we still love her and miss her :) We recently welcomed a new provider Chelsea, she has been so patient and understanding with me and my boys as we start this new HAB-M program with Recker. Its a new thing for all of us and she has made it so much easier. Things have been hard lately and she has made things easier for jeremy and I both. We went on a date for the first time in, i don't know probably MONTHS, the other night and it was just what the doctor ordered. She's amazing and we feel so blessed to have found her and have her working with us and our boys.

-This holiday season we were extremely blessed by several "Secret Santas" (i like to refer to them as our secret Good Samaritans). We received gift cards, and other amazing gifts from these nameless saints.

But I have to say a little something to the families that did the "12 days of Christmas" for our family. I can not tell you how you blessed us by doing this. The night we got your first gift was an extremely rough night, things were not good at home. Your gifts became the highlight of our holiday season. We were soooo excited every night to get home and find your note/drawing/painting and it was so fun. It lifted our spirits more than you'll ever know. We laughed and cried tears of gratitude every night as Jeremy and I sat and opened the gifts from you. You will never really know what you did for our family by doing this. It brought Jeremy and I closer, during a very strenuous time in our life. It was fun to fill the boys stockings full of all the little "knick knacks" you gave them. Jeremy and I decided we will be following your example and doing something similar for a family next year. Anyways you'll always be angels in our eyes. And I wish I knew who you were so I could hug each and every one of you. Thank you from the bottom of our hearts.

This year I am going to make sure to blog more about the positive and happy things going on in life. Yes I will still blog on those hard days and it will be honest, raw and ugly and a lot of you will probably want to skip those posts, and thats ok. Just know Im trying to stay positive, happy and bright. We are trying and still learning how to get there again. Luckily there are more good days than bad, but like everyone we have those bad days as well.

Thank you to everyone who has crossed our path this year, we have been blessed in so many ways and by soooo many people. THANK YOU!! WE LOVE YOU!!







Thursday, December 18, 2014

Numb.

Im not sure exactly when it happened, but it finally happened.
"It" hit me.

I don't remember this happening when Recker was diagnosed.
I thought I was holding it together so well.
Now I avoid contact with everyone because I feel like a crazy person.
You can't even ask me a simple question like "How are you doing?," without the waterworks.

In the last week or so at least five separate people have walked into this trap and I apologize whole heartedly. You were being so kind and asking a simple question, being polite. Im sure you never expected what came next. Just know I love you for being so kind and understanding.

I have absolutely no control over my emotions lately.
I frequently feel this out of body feeling like I'm walking through a dream, almost like I'm in shock.
Theres a knot in my throat at all times.
My stomach is constantly churning and nervous.

I received an email from a fellow ASD mom telling me that she recently was told that she may be facing the same thing with her second son. She asked me "How are you doing this?! Because I can't..." I didn't know what to say. I was instantly sick to my stomach. No one should have to go through this. I told her the truth. That I wish I knew how to answer her question and that I am NOT doing "this," because I honestly don't know how.

Im taking it one day (sometimes one hour) at a time. "Just Get Through Today" is written on jeremy and i's message board right now.

I always told myself and others with a smile that if Ezra did end up being diagnosed that at least we know what we're doing now. I couldn't have been more wrong. I don't know what Im doing. I don't know how to do this. Im still trying to figure it out.


Saturday, November 15, 2014

That day...

So despite how my last post sounded, we really have been doing ok.

The sadness, pain and heartache comes and goes in waves.
We have good and bad days.

Like I mentioned before, we've suspected this for quite some time now, so it wasn't a shock to us.
We had voiced our concerns to some family and friends, and I'm sure it was out of love and in an effort to be supportive, our fears were always quickly dismissed with a "Well boys usually develop slower", "Well he didn't have a sibling to really learn from," and a a couple "do you think maybe you're just being paranoid/extra worried?"...We never were offended or hurt by any of these responses, and to be honest many times we allowed ourselves to believe them, to feel comforted.

But we knew.

There were a few times when we sat down together and tried to figure out if we were really just being paranoid. We would just try and ignore our suspicions, but they were always there, deep down, festering inside of us.

To be honest, there hasn't been a day since we found out I was pregnant with Ez that I haven't wondered. We knew there was a 25% chance, since we already had a son with ASD. But I promise you there is not one parent out there with a child who has ASD that hasn't wondered or worried about the same thing for their other children, at least I know I'm not alone with this feeling.

We have been seeing state early intervention specialists & doctors since August (we made the appointment in February...i'll talk about that atrocity in another post). We were told he was "At Risk for Autism" by several different specialists/doctors. We knew this, which is why we sought them out.

So we powered forward, still doing ok, still strong.
We just wanted to either get a diagnosis or rule it out completely. We wanted this torture to be over with, we wanted to be able to deal with this head on, instead of dancing around it any longer.

I remember sitting in the exam room/office for hours talking about Ezra, filling out paperwork, and answering question after question. I was completely holding it together, I really was doing so good. I just wanted to get through it, get Ezra the help he needs. I was all business.

We were at the end of the appointment.
We had already agreed in previous appointments that he had ASD. This appointment was to get it officially on paper, and I knew that. I was given paperwork/evaluation tools to fill out for her and bring back to the appointment and give to her.

Keep in mind, I literally hadn't shed a tear or even anything for the last few months (like I said, I was all business--trying to get things done...I didn't want to get emotional, because I knew i'd fall apart).

She turned to me and said "So we do not even need to score these (the evaluation questionnaires she wanted to me fill out & bring back). I've seen enough and we have enough here to write the diagnosis without even scoring these."

For some reason that triggered EVERYTHING i'd been holding in for months.
I got that lump. You know the one you get in your throat when you're trying not to cry?
I felt the tears falling. At that moment for the first time, I felt shocked.
I had to pull myself together. I needed to be strong. To get through the rest of this appointment.

I stood up, went over to Ezra to clean up the mess he was making with his granola bar, I needed to be distracted.

The appointment ended. I walked out to my car and buckled Ezra into his carseat.
I sat down in the front seat and looked at the paperwork she had given me.

There it was.
It was the first time i'd seen it officially on paper.
AUTISM.

Diagnoses:
Encephalopathy, 348.30
Autism, 299.00
Global Developmental Delays, 732.42
Communication Disorder, 784.42
Coordination Disorder, 781.59
Sensory Processing Disorder, 313.9
Macrocephaly, 756.0
Sleep Disorder, 780.56


I instantly became sick.

I lost it.

In that moment, all i wanted was to curl up in bed with Jeremy and my boys and cuddle for days.
And we did, that night.
We cuddled in bed holding each other, crying and laughing at Recker singing disney songs for us.

Wednesday, November 12, 2014

Life on Repeat...

Its been awhile...

Its been a hard year.
No honestly this year has been hell.

Every time I sit down to write, I get nothing.
Im not sure if I just don't to want to accept our truth, I feel like when I put our life into words, when I put it out there, that I have to finally accept it and acknowledge this is real, this is reality.
This is our life.

I can't explain the insanity this year has been. Ive spent way too many nights on my knees begging for help, for relief, for comfort.

Fortunately most parents do not have to experience the feeling of your child "slipping away" from you, but Jeremy and I have had to...TWICE. And its a pain unlike any other we've felt.

I just want him to stay! I don't want to lose him.
But he is slipping away, like Recker did.  Slower, but all the same in the end.

Every missed name recognition, every lost word or skill, his indifference...a stab to our hearts.

Everyday is torture.

Its been about a year now since we first felt it...We never actually said the words out loud (until recently), but we both knew. We would both look at each other and just know, then one of us ended up in tears with the other comforting them, lying, saying everything was going to be fine when deep down we both knew it wouldn't be.

It took YEARS to heal from Recker's diagnosis, honestly I'm not sure we had fully healed. And now another blow.

Jeremy and I were so excited to be able to go and do things with him that we weren't/aren't able to do with Recker. Yes I know how terrible that sounds (but imagine how horrible it makes us feels to be a parent and think that), but its true.

We love Recker more than life itself, but with his diagnosis came the reality that we won't be the type of parents we've imagined our entire lives. The image you have growing up of what you're life will be like as an adult, as a parent, was gone in an instant.

We thought when we had Ezra that we'd be able to partially fulfill that dream we had for ourselves (Selfish? Yes. But try and tell me you don't have little hopes and dreams for your child/dreams you've always wanted to fulfill as a parent).

We're dealing with that reality all over again.

Im not sure how much heartbreak a heart can take, but I can tell you, mine is almost beyond repair.

Why?! How am I expected to pick up these pieces again and mourn this loss again, with another child? Jeremy and I had just barely stopped crying and finally felt like we were healing from Recker's diagnosis. It just feels never ending. We were finally standing on both feet again, and just like that we get knocked onto our backs. AGAIN.



Our sweet Ezra has Autism.
































Wednesday, August 13, 2014

Mt. Graham 2014

One of my favorite traditions since marrying jeremy is that we go camping with his older sister Aubrey's family every summer. We honestly talk about it and look forward to it all year long. I have so many amazing memories from the past years camping. Aubrey taught me the flashlight trick while pregnant, and showed me how to get Recker to kick when i was pregnant. We get rained on almost every year but it never brings any of us down, we just laugh play in it for awhile and then gloriously take the best nap of your life. This year was just as amazing!

I'll never forget that night in the woods, squatting over a makeshift toilet in the rain, when two giant raccoons decided to hang with me. It was terrifying and needless to say i required a "bathroom buddy" after that.















Their faces say everything, we told them we had to pack up and leave. 



Mt. Graham we love you, and can't wait to see you again!!


Tuesday, July 15, 2014

R-E-C-K-E-R

That one time my 4 year old son who is non verbal spelled his name....

Videos wouldn't work! Check my IG for the videos!!
@kaylarousselprints

So while i was recovering from my Tonsillectomy, i got a text from Rachel (Recker's HAB/Respite worker) that he spelled his name out loud without being prompted! I kinda didm believe her haha so we decided we needed to see it to believe it! I wish i would have videoed him the first time we tried, because these videos are after like us forcing him to do it over and over for like 30 mins. Can you blame us?! hahahah anyways we're just so obsessed with him and the progress he's making!

The most PERFECT ordinary day.

Today began and ended so perfect. Today was full of sooooo many huuuuge accomplishments for Recker. Those "HUGE" things to any typical family would most likely be considered very very small.  Recker woke up cuddling and snuggling and loving on Ezra. He then went on to share his bowl of cereal with him. They spent the morning sharing the iPad and playing with Recker's cars. No fights! We went to lunch with Aunt Kaitlyn and he sat and ate perfectly, no melt downs. We walked to sprouts and he PUSHED THE CART. The first time he didn't have to sit in the basket. He pushed the cart around for me. He helped me pick fruit and bag it, he put candy away without a meltdown when asked. He helped load the groceries onto the conveyer to check out. NO MELTDOWNS! We went home and relaxed, played and read books...again no fights (usually there are fights-ezra crying-during "downtime"). I took Recker to therapy and he dumped out a huge basket of toys, i asked him once to clean them up and guess what, he picked them all up. I told him if he kept his shoes on during all of therapy that i would take him to get an icee at QT. To my HUGE surprise, his therapist brought him out and said he was unusually compliant and followed all directions and KEPT HIS SHOES ON! THIS IS HUUUUGE! So as i promised we drove to QT (i dread taking him to the gas station because he goes insane running around everywhere grabbing everything in sight). He got out of the car ran ahead of me and my first thought was "here we go, sigh" but he held the door open for me. We walked in and he immediately dropped to the floor covering his ears and moaned a little bit until i crouched down hugged him and told him he would be fine, it was the drink machines making the loud noises. He got up, grabbed his cup and picked out his icee. What came next was incredible. He just stood there and waited for me while i filled up my own cup. He didn't run away, or even wander off. We walked by the candy to go check out and, NOTHING. No meltdowns, no throwing and grabbing. He set his drink on the counter and handed the man my debit card. I left the gas station in tears, happy tears. Im sure it sounds so silly but if you could even know how hard it has been to go into a gas station or even a store with him has been. This is kinda a dream come true. We finished the night off meeting up with friends at Cafe Rio where he sat and ate his entire meal without a meltdown. He got up a few times and got a little rowdy but nothing enough to get into trouble. We went and played at our friends house where he continued to follow most directions (and to destroy their infamous globe).
We ended our night watching Recker cuddle Ezra and snuggle with his weighted blankets from his grammy. So now that I've given you a detailed account of my day, I'm sure its super boring to you, but today has been one of the best days Recker has had in longer than i can remember!! Today was the most perfectly ordinary day. I am so grateful for the "little things".


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.


video



Please check out her IG at @lucadele 

Hashimotos

I have been being tested for Hypothyroid every 6 months for the last 7 years and my blood work has always come back clear despite showing obvious signs of having Hypothyroid. I finally found a doctor who knew what he was doing and explained to me why my blood work always came back negative. I was diagnosed with Hypothyroid Disorder in April. I was told my body was running at 40% of its capacity and that my Thyroid was failing my body. I was also told that currently I'm infertile and having a baby would be impossible if we tried. My hormones are all completely at opposite ends of where they should be. So we've been treating my hormone imbalances as well as my Hypothyroid. Well months came and went and there was no improvement, in fact all my symptoms were quickly worsening. We redid blood work at found that i have an Auto Immune Disease called Hashimoto's Thyroiditis. This was no surprise to me considering my mom, her sisters and all her aunts have this terrible disease. My mom was just recently diagnosed within the last year. So i was diagnosed with Hashi's during my Tonsillectomy recovery so i decided to wait to start the medication until i was off all pain meds and antibiotics. This is the first week starting my medication for the Hashi's and the doctor said it will take about 4-5 weeks to see any sort of difference or improvement. Anyways for those of you who do now know much about Hashimotos heres a little summary....


"Hi.  My name is Hashimoto's.  
I'm an invisible autoimmune disease that attacks your thyroid gland causing you to become hypothyroid.
I am now velcroed to you for life.  If you have hypothyroidism, you probably have me. 
I am the number one cause of it in the U.S. and many other places around the world.

I'm so sneaky--I don't always show up in your blood work.
Others around you can't see me or hear me, but YOUR body feels me.
I can attack you anywhere and any way I please.
I cause severe pain or, if I'm in a good/nice mood, I can just cause you to ache all over.

Remember when you and energy ran around together and had fun?
I took energy from you, and gave you exhaustion. Try to have fun now.
I can take good sleep from you and in its place, give you brain fog and lack of concentration.
I can make you want to sleep 24/7, and I can also cause insomnia.

I can make you tremble internally or make you feel cold or hot when everyone else feels normal.
I can also give you swollen hands and feet, swollen face and eyelids, swollen everything.
I can make you feel very anxious with panic attacks or very depressed. 

 I can also cause other mental health problems. You know crazy mood swings? That's me. Crying for no reason? Angry for no reason? That's probably me too. 

I can make your hair fall out, become dry and brittle, cause acne, cause dry skin, the sky is the limit with me. I can make you gain weight and no matter what you eat or how much you exercise, I can keep that weight on you.

If you have something planned, or are looking forward to a great day, I can take that away from you. 

You didn't ask for me. I chose you for various reasons:
That virus or viruses you had that you never really recovered from, or that car accident, or maybe it was the years of abuse and trauma (I thrive on stress.) 

You may have a family history of me. Whatever the cause, I'm here to stay.

I hear you're going to see a doctor to try and get rid of me. That makes me laugh.  Just try. You will have to go to many, many doctors until you find one who can help you effectively.
You will be put on the wrong medication for you, pain pills, sleeping pills, energy pills, told you are suffering from anxiety or depression, given anti-anxiety pills and antidepressants.
There are so many other ways I can make you sick and miserable, the list is endless - that high cholesterol, gall bladder issue, blood pressure issue, blood sugar issue, heart issue among others? That's probably me.
Can't get pregnant, or have had a miscarriage?
That's probably me too.
Shortness of breath or "air hunger?" Yep, probably me.
Liver enzymes elevated? Yep, probably me.
Teeth and gum problems? TMJ?
Hives? Yep, probably me.
I told you the list was endless. 
You may be given a TENs unit, get massaged, told if you just sleep and exercise properly I will go away.
You'll be told to think positively, you'll be poked, prodded, and MOST OF ALL, not taken seriously when you try to explain to the endless number of doctors you've seen, just how debilitating I am and how ill and exhausted you really feel.  In all probability you will get a referral from these 'understanding'  (clueless) doctors, to see a psychiatrist.

Your family, friends and co-workers will all listen to you until they just get tired of hearing about how I make you feel, and just how debilitating I can be.

Some of them will say things like "Oh, you are just having a bad day" or "Well, remember, you can't do the things you use to do 20 YEARS ago", not hearing that you said 20 DAYS ago.
They'll  also say things like,  "if you just get up and move, get outside and do things, you'll feel better."
They won't understand that I take away the 'gas' that powers your body and mind to ENABLE you to do those things.

Some will start talking behind your back, they'll call you a hypochondriac, while you slowly feel that you are losing your dignity trying to make them understand, especially if you are in the middle of a conversation with a "normal" person, and can't remember what you were going to say next. You'll be told things like, "Oh, my grandmother had that, and she's fine on her medication" when you desperately want to explain that I don't impose myself upon everyone in the exact same way, and just because that grandmother is fine on the medication SHE'S taking, doesn't mean it will work for you.

They will not understand that having this disease impacts your body from the top of your head to the tip of your toes, and that every cell and every body system and organ requires the proper amount and the right kind of of thyroid hormone medication for YOU.
Not what works for someone else.

I am often confused with Fibromyalgia because we have the same symptoms, plus more.
You also more likely to get several other Auto Immune Diseases now that you have Hashimotos, including Fibromyalgia, Addison's Disease and Adrenal Disease.

I am Hashimoto's Disease. I am You."



How Hashimoto's personally affects me:


Energy Level and Sleep:
  • Chronic fatigue
  • Less stamina than others
  • Long recovery period after any activity
  • Inability to concentrate
  • Sleep apnea
  • Snoring
  • Insomnia
  • Need naps in the afternoon
  • Weakness
  • Wake feeling tired
  • Frequently oversleep
Weight:
Body Temperature:
  • Cold extremities
  • Cold sweats
  • Night sweats
  • Heat intolerance
  • Cold intolerance
  • Internal shivering
  • Clammy palms
  • Cold feet
  • Low basal body temperature (below 97.8 degrees Fahrenheit)
Infections:
  • Frequent infections
  • Chronic illness
  • Low immune system
  • Frequent colds
  • Frequent flus
  • Susceptibility to bronchitis
  • Hard time recovering from infections
  • Recurrent sinus infections
  • Recurrent skin/nail infections
  • Recurrent ear infections
  • Recurrent nose infections
  • Recurrent throat infections
  • Upper respiratory tract infections
Mouth and Throat:
  • Difficulty swallowing
  • Sensation of lump in throat
  • Sensation of pressure on throat
  • Pain and tenderness in neck and/or thyroid area
  • Sore throats
  • Swollen tongue
  • Choking fits
  • Salt cravings
  • Dry mouth
  • Halitosis (bad breath)
  • Propensity for gum disease
  • Low, hoarse voice
  • Bleeding gums
  • Receding gums
  • Irritated gums
  • Swollen gums
  • Persistent teeth clenching
  • TMJ
Eyes:
  • Poor focusing
  • Achy eyes
  • Blurred vision
  • Drooping eyelids
  • Sensitive to lightSpasms of the eyelids
  • Dark rings under eyes
  • Puffiness around the eyes
  • Problems with night vision
Hair:
  • Body hair loss
  • Head hair loss
  • Dry hair
  • Brittle hair
  • Eyelash loss
  • Thinning or loss of outside third of eyebrow
Skin:
  • Dry skin
  • Dry itchy scalp
  • Flaky skin
  • Cracked heels
  • Coarse patches
  • Pale skin
  • Pigmentation in skin creases
  • Rashes
  • Skin tags
  • Easy bruising
  • Slow wound healing
  • Bumps on legs
Pain:
  • Migraines
  • Chronic headaches
  • Chronic back and loin pain
  • Wrist pain
  • Muscles and joint pain
  • Tactile Allodynia
  • Joint stiffness
  • Painful soles of feet
  • Muscle cramps
  • Aching bones
  • Aching muscles
  • Joint pain
  • TMJ
Digestion:
  • Hard stools
  • Constipation
  • Loss of appetite
  • Food sensitivity
  • Irritable Bowel Syndrome (IBS)
  • Lactose intolerance
  • Celiac Disease (being tested)
  • Weight gain in abdominal area
  • Nausea
  • Acid Reflux
  • GERD (Gastroesophageal Reflux Disease)
Menstrual Disorders:
  • Heavy periods (menorrhagia)
  • Irregular periods
  • Very long cycles
  • Severe cramping
  • Failure to ovulate
  • Premenstrual syndrome (PMS)
  • Extreme bloating and water retention
  • Premature or delayed puberty
Reproductive Disorders and Pregnancy:
Emotional:
  • Tension
  • Irritability
  • Wanting to be solitary
  • Mood swings
  • Anxiety
  • Personality changes
  • Jumpy
  • Easily startled
  • Nervousness
Other Related Conditions:
  • Poor adrenal function
  • Anemia
  • Lack of coordination
  • Clumsiness
  • Tendency to fall
  • Dizziness
  • Chronic allergies
  • Chemical sensitivities
  • Restless Leg Syndrome
Brain:
  • Panic attacks
  • Memory loss
  • Confusion
  • Brain fog
  • Mental sluggishness
  • Poor concentration
  • Mania
  • Phobias
  • Obsessions
  • Loss of drive
  • Seasonal Affective Disorder (SAD)
  • Nightmares
Lungs:
  • Bronchitis
  • Difficulty breathing
  • Air hunger
  • Pleural effusion (fluid around the lung)
  • Shortness of breath
  • Tightness in chest