Tuesday, April 15, 2014

Guest Blogger

Just want to give a shout out to this Super Mom! She is incredible and definitely a mama i look up to!
Feel free to check out her amazing IG feed @suprtucksmama you're guaranteed to be inspired!!

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

A: With Tuck, I knew from birth something was not right. Being a new worried overly dramatic mom, I was told anything to calm my fears. He rocked himself, he wouldn't know you were in a room sitting inches from him, he would "hum" insistently, food choices were becoming sparse for his choosing as he began to refuse he most favorite foods, holding him was sheer terror (we had yet to learn that our touch to his skin was comparable to razor blades) When he turned one year old, everything changed and I knew I had to trust my gut and hold on tight. He spoke only one word "Dada" for a few months leading to his first birthday. Shortly after he fell silent. He attended a day school and the director there pulled me aside to ask if I had ever had him evaluated. Because Tuck had the same signs of Autism, that her middle son had. She had word from his teacher that something wasn't right. He wasn't like the other children. So she sat in the one year old class as an observant. She knew. I was still fighting my denial. His pediatrician laughed in my face and told me to leave it alone. The same day I changed pediatricians based solely on his reaction. I was going on this journey to help my son, and the last thing I wanted was to be looked at as a fool. Within the month of his day school director asking me about an evaluation, I went and had it done. That's the day I lost my mind. I got angry. I hated Autism. I hid in my shower during nap time that day and screamed and cried until my face hurt. Days later, I was still angry. But for different reasons. I stopped analyzing. I stopped the days and long nights of mind numbing researching. And I got angry. At Autism. If I could see it as a "thing". An object that took son. I would be a force to be reckoned with. And that's where our fight began. Soon after his diagnosis (at 17 months) and my breakdown/epiphany Tuck began intensive therapy. Five days a week five hours a day, and an OT came to our home in the afternoon on certain days of the week, then my homework with him at home so he wouldn't regress. It was literally our every day. We eventually went to our new pediatrician. And he welcomed Tuck with open warm loving arms. He understood. He cared. And our office visits were slow and careful as to accommodate Tuck's needs. That was five years ago, we have been with his pediatrician ever since.

Q: A question from a blog reader..."How do you want me to explain your child's condition to my child? What do you prefer i say?"

A: When explaining to your child about my sons condition, I would say what I tell Tuck about his friends on the spectrum. Everyone is different. Like the colors in your crayon box. Everyone has good days and bad, just like you. Be kind to your friend. Show love. And do not be mean or react negatively. Because you wouldn't want them doing that to you.

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

A: I would say to the parents, pull them close. Pull your family close. Pull your friends close. Allow them to experience the good the bad the triumphs and the failures that you feel are your own. You are going to need that Army on your journey. There maybe negativity. I pray for you there is not. But those will eventually come around to your new path in life. Be ready to fill your heart with forgiveness for them. For those who scoffed at you and the diagnosis. It may feel as the most ultimate rejection. I speak from experience on that. This is your child. You are her/his only voice. Share with other autism parents. Listen to their journeys. Learn from each other. Engage with them. But please do not judge. Some of us are further along on this road, while others are still reeling from what is a devastating reality. That we ALL share. We ALL know the feelings you feel. And we are ALL here for each other. Be kind. But most importantly be together. We couldn't have done this without our army for Tuck.

Q: What does Autism look like in your home? (please send a photo of your child) and describe what your average day "dealing" with Autism is like. How ASD affects your child on a daily basis.

A: When our journey began we would accommodate Tuck's every need. Quiet house. I learned to schedule a day like we lived in a maximum security facility. Without the ridged schedule anything would throw him into a fit that would rage for hours. He would loose sleep. Or he would sleep for literally six hour stints during the day. It was crucial to have it all laid out. Play by play. No wavering. It was also incredibly exhausting to say the very least. We learned that some people in our lives were not keen on our way of handling our home. But with time they came to understand when they were present for the repercussions. Consistency and learning through play. That's how we rolled. For the first part of our journey. As Tuck grew and learned to use his visual charts, we had them so he could control and see "what's next" in the day. He would take one visual card down. Place it in the envelope below his chart and move on. This was crucial also as it was used for him in his classroom at school. I'm not saying it kept the cars on the track all the time, but it beat the alternative. Five years have past, and we now use a paper in Tucks room. It lists his daily things he must do. Brush teeth, put clothes away, outside chores, indoor chores, homework, meal time, time for school, etc. Much much more lenient than the first three years. We spend a lot. An incredibly a lot. Of time outside. We live on a farm. So there is always something to do, see and explore. The quiet here has eased Tuck after a hard day. And with the "big kids" (12 year old & 9 year old) up the road from us, that LOVE to come play, they have really changed Tuck for the better. For more independence. To just be Tuck. They accept him as part of their family. And they love him so dearly as we do them. We have our moments of just sitting. And when they happen it warms my heart as to where we have been. Where we began. And the trials and tribulations that got us here. Our home has moments of insatiable laughter. Movie nights. And lots of family gatherings. But I still watch the clock. It's my little habit. My glimpse back in time. To where our journey began. Our lives on this beautiful, wild, sad, happy, ultimately blessing journey through Autism.

Friday, April 4, 2014

Guest Blogger- Joie Madison

Ok I just want to start off my series of Guest Bloggers with this amazing woman who not only is raising children who are only 13 months apart, but both children have Autism. She is so inspiring and definitely someone worthy of a "Mom of the Year Award." 

Hi! Joie Madison here.
I live in the small Northeastern Utah town of Vernal.  I enjoy photography and filmmaking when I have a spare moment.  I am wife to an ambitious, hard-working ginger who is graduating with his 4th degree this May in Petroleum Technology.  I am the mom to two very energetic kiddos. Maximus, who is 4, loves climbing, anything involving water, and being chased & tickled.  Dempsey, only 13 months younger, is 3.  She loves swinging for hours, singing songs, and making shapes out of playdough.  I cannot even put into words how much love I have for those two, which is fitting because they do not currently speak.
Max and Dempsey both have Autism.

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

Here are some excerpts from my blog:
I anticipated motherhood as another milestone from which I would gain great joy.  I was right.  Maximus Riley came into the world beautiful and healthy.  As a new mother I was amazed at my inner fits of paranoia.  I never knew I could be so nervous to speed in my car. I would continuously check if he was breathing.  People tried to explain it to me, but until I held my own little baby and felt the incomparable sense of responsibility and loveawaken in me, it is impossible to understand.
Everything was perfect.
Perfect… a word that has new meaning for me now.
Max was developing amazingly.  He was eating well. He was hitting all of his developmental milestones: tummy time, holding head up, rolling over, crawling, and even walking by 1 year.  He could understand many things that we said to him.  When we would name objects, people, or places he would look with his eyes or point.  He even had a handful of words.  He was happy, expressive, active

Then at about 15-16 months old something changed.  At first he just seemed a little fussier and maybe withdrawn.  I tried to tell myself that he was just adjusting to his baby sister, Dempsey, coming home.  However, I knew in my gut that it was more than that.  The first thing I really noticed is that I couldn’t get him to point at things anymore.  Then he wasn’t even saying the words that he knew before and he wasn’t making much eye contact.  Within a matter of months he had totally regressed in all of his language and social skills.
I can look back on it now and see it all so clearly, but at the time I was in denial.  I had a newborn. We were trying to get back on our feet financially from recent layoffs. So the next year was spent coping.  As Dempsey began growing she was not hitting her cognitive and social milestones either.  Early intervention and evaluations by experts had given me very little information as to why my children were like this and what I should do.  Doctors said they didn’t want to give either of them a formal diagnosis, but with their early emerging symptoms they placed them both on the autism spectrum.  I immediately wanted to blame myself.  You see, I have epilepsy. During both pregnancies I had to take anti-seizure medication.  It had warnings on it, but I naively just took my doctor’s and neurologist’s advice that it would be worse if I had a seizure while pregnant, so I should just continue taking the pills.  Now of course, it can never be proven that medication was the cause of anything, but I just want you to know that as a mother I cannot keep my mind from going there and feeling that guilt, responsibility, and wondering how our life may be different if I had done things differently.  Perhaps it was immunizations?  Maybe it was the result of toxins in the environment and in the food we eat? My feeble human mind wanted an explanation so badly, but my heart didn’t want to face the reality.
I couldn’t see down this path.  I was in a very dark place. Every time I looked at my children and thought about their unknown future, it was too much. I would break down and become emotional.  I would lash out at the other important relationships in my life.  I was at times very self-destructive and self-deprecating.  I very literally had to grieve over the future I had envisioned for my children and what their reality was now.  Would they every really SEE me?  Would they call me Momma and know what that meant?  I was trapped in my own sadness and fear. Something that fed into this fear and grief was recalling growing up with my younger brother Tori, who has special challenges of his own.  I remember very clearly how difficult it had been for my own parents as they struggled to understand and deal with Tori’s developmental issues. The thought of facing years of aggression, anger, and unpredictable behavior left me paralyzed and depressed.
I cannot name the precise day or moment when the grief began to subside and I was able to start living in the here and now.  Much of the credit can be given to my amazing husband, who continually supported me, encouraged me, & reassured me that those babies needed me and I needed them. He loves them so purely. He has always held so much optimism and never compared them to other children.  We often had conversations about how it felt like Max had left us.  He was a totally different child and we missed the boy we knew for 16 months.  After what felt like years of tears, prayers and feeling like I was in survival mode, I was finally ready to take some action.
I began making myself my children’s expert on their brains, nutrition, physical bodies, developmental stages, and behaviors.  I started finding other parents who were going through similar issues to give me some direction.  I started looking around my town to see what resources there were outside of the government funded programs.  When you know better, you do better, right?  At least for me, if I knew better I couldn’t live with myself if I didn’t do everything I could to help my children live up to their potential during this life.  I signed up for this gig, so I needed to earn the title of Mother.

Q: What are your biggest fears looking towards the future?

A better question might be “what am I NOT afraid of looking toward the future?”  The crazy part, as I mentioned above, is I actually have a younger brother with ASD. He is 26 now.  When I first faced the truth that I was going down this road with my own children I had vivid memories of the aggression and emotional toll that it took on my brother and my own parents as they went through school, puberty, and into adulthood.  Also, the fact the he will most likely never be independent is a huge concern I have for my children.  I see how my brother is just aware enough to know that something is wrong with himself and yet he is powerless to change his situation.  I have so many fears that I will have to face similar journeys with my own two. However, so much has changed in the last 20 years. There is so much more information, resources, and support available and I hope to make an impact on my children’s future.

Q: What does Autism look like in your home? 

My day is a series of puzzles. I am an intense people-watcher by nature and so I am consumed at times trying to search their little faces, body language, grunts, different pitches of screams, vague gestures, to try to figure out what they are trying to communicate in any given moment.  I often try to imagine what the world must seem like to them, so that I can help them better adapt. They demand my attention, my full focus, all my energy until some days I have nothing left.  

As long as we are in our home, our familiar place, our routine we do well. When we venture outside I have had to learn to quell my anxiety. They are unpredictable. At any given moment some unknown stimuli could set them off. They have no sense of boundaries. Whatever they want becomes an extension of self they just immediately want to touch, take for their own and if I try to impose boundaries then I get full-on meltdowns from Dempsey, and most of the time Max doesn’t even acknowledge what I say and I must physically remove him or stop him from whatever he is doing.  They are on a gluten/dairy/soy free diet, which I have seen amazing results with, but also presents it own challenges when leaving the house.  I have to prepare food for them when we travel, for preschool, and parties.  They only have a list of maybe 5-10 items that they are willing to eat at any given time because of sensoryissues(taste, texture, temperature, presentation, etc.). It is the hardest thing I have ever done in my life.

 I live in a rural area. The only resources available are the early intervention and the state funded special-needs preschool.  If I want them to have any kind of physical, occupational, or speech therapy I would have to drive 3 hours each way multiple times a week.  That is not an option for us right now.  I am sure thousands of parents face the same dilemma.  Luckily, before we moved here we were able to work with the Brain Balance Center.  We saw huge leaps forward while he attended there and we began to focus on a holistic approach that addressed the brain and body and not just the syptoms(i.e. not just speech, social skills, aggressive behavior etc).  We still use their methods at home and we hope to get both of them back in the next year.  

Everyday Max is becoming more and more my little man. He is a such a good-
hearted soul. He tries so hard to understand and listen when I am giving him instructions. He has an immense fascination with phonics and loves to over-emphasize the sounds of letters and words. He is not conversational and does not call me Mom or address anyone by name, however, he loves to do funny voices. He is our little parrot and Adam and I get the biggest kick out of making him imitate funny lines from shows and movies. He just laughs at us trying so hard to get him to do it. He LOVES hats. He sees one he has to put it on, then have Adam put it on and go back and forth over and over. He likes to look in the mirror at himself with different hairstyles and hats on and listen to himself talk. Lately hehas become very emotional. It’s all appropriate responses to situations, yet it breaks my heart, because I know there is so much unnecessary frustration because he doesn’t have the words tell me what he needs and wants. He is generally happy and loves to tease and laugh. He loves when Dad comes home from work everyday and chases him around the house. He repeats what Adam says to him “Imma-catchoo”(I’m gonna get you) so that Adam will chase him. We love Maximus so much!

Dempsey is living up to her namesake(the boxer Jack Dempsey) of being a fighter.  At any rate, she is a very determined little spirit. There were about 3 weeks in January where there was no living with her. Nothing we could do would make her happy. Tantrums consumed most of her awake time. It was exhausting mentally and emotionally on all of us. Lately though, she seems to have turned a bit of a corner. She appears to be understandinga little bit more language.  She is not so quick to fly off the handle if I say no, or if she isn’t being understood immediately. She doesn’t use language to communicate at all, but she has learned that she can lead us by the hand and help us understand.  She has these moments during the day when she can sit on my lap for a whole five minutes and just engage with me.  You don’t know how special that is to me. She’ll touch my face, giggle, want to play little teasing games, she LOVES when I mimic sounds that she is making. It’s almost like I get to go into her world for a brief moment…but then just like someone shuts off a light, she’s done, gone, and I wait for the next time she lets me in.  We have begun to hear her little voice. She has started to memorize some songs and the alphabet and sometimes singing is our only way of talking to her. Love that little spitfire-- I could burst!

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

I am forever changed by Autism. I can never go back to being the mom of two little “typical” babies. Even when I don’t have my children with me and I hear a child having a meltdown in a grocery store or anywhere in public, I immediately want to find them and just let them know I understand.  I think I just want people to not jump to conclusions.  No decent parent wants their child to be screaming and causing a scene in public, or invading your personal space and taking your things.  If I could teach my child not to do those things, you better believe I would! Please just have some compassion. I often don’t volunteer the fact that my children have Autism when they are in public. Perhaps because I have found that many people are not sure how to react. Max and Dempsey look perfectly fine and they can be quite engaging at times. I know as they get older and it can’t be dismissed as mere “toddler” behavior that I will need to be more upfront with people, because I do believe that communicating is really the key to everyone being able to get what they need in any given situation.  

Q: Do you plan on having more children? Are you afraid they will receive the same diagnosis?

I am incredibly terrified about having more children.   The desire is there, but the statistics are not in my favor.  The likelihood of another child being diagnosed for me are 1 in 3.  I have my days when I am incredibly filled with faith that if I change my epilepsy medication to something more tried and tested, take care of my body with healthy diet & lifestyle changes(like I didn’t do at all with the first two), then maybe I can control the outcome, but then the thought comes back to me of having to go through what I have already been through in the last 4 years a third time and I just don’t know if I am emotionally strong enough or if I want to.  So many variable, so many emotions…It is not a question I can answer today…

If people would like to read more about my experiences, current therapies we are using, or to contact me my blog is nosmallchanges.com

Tuesday, April 1, 2014

Autism Awareness Project

One of my goals this year was to make life easier for Recker, any way that I am capable. I realized awareness is one small way i can help make his world more bearable. Talking to everyone I know and meet about Autism and helping them understand Recker and all the millions of over kids like him. So this month is Autism Awareness month and i have been working on a project. I have reached out to you, my readers and social media, family, neighbors, and even strangers to find out what you would like to know about Autism. I want to answer (with the help of professionals) all of your questions until you don't have anymore.

I figured i would start with Recker and his diagnosis story. I know i have posted this several times but for those who have not seen it ill brief you with pieces from previous posts....

"When Recker was 11 months old he said his first word, "dada" followed shortly by "momom." I remember it vividly, the moment i first heard that word "momom." He and I were sitting on my bed, he was in jammies (seriously little guys in two piece jammies, there is nothing cuter). I was reading and he was looking through one of those drool proof baby photo books (you know the puffy ones?) and he said it. That feeling was incredible. Looking back i wish i would have reveled in it, would have made the moment last longer. Had i known i wouldn't be able to hear it much for longer, I'm sure i would have. Recker went on the next month or so learning new words: 'dada', 'momom', 'baba', 'no' and 'don't'.

The last word i remember him saying was "don't." He was yelling at Jeremy in my parents living room because we were leaving and he was picking up all of Recker's toys and putting them away.

"Don, Don, Don, Don, Don!" I remember standing on the other side of the couch laughing.
But he stopped. All of the words stopped. He changed."

We decided to visit our pediatrician, we were concerned. We were told (not by our usual pediatrician) that Recker was fine and to not worry about it and to bring him back to be tested when he turned three. I was NOT ok with that and i knew something was going on with my baby. We were finally able to get into see his pediatrician. He did the MCHAT (ill talk more about that in a later post) and he failed it. Dr. Guthrie referred us to a Developmental pediatrician. We called and the wait list was months long but luckily we were able to get squeezed in. I made the appointment and it felt like we waited forever for that day to come.... 

"D-DAY" (diagnosis day)

May, 23, 2011
i barely slept last night. i lay in bed wide awake. sick. worrying. praying. praying that i'd be able to get through today. praying that everything would be ok. i just had this feeling, ive had it once before, in louisiana. i just knew. i got recker all dressed and we headed to phoenix. when we got there,  we got into see Dr. Robbin Blitz (she used to be at St.Joe's, now she's at phoenix childrens) at around 9:30am, she came in with her intern. She asked me to sit next to her by the computer while her intern observed/played with recker. they layed out gymnastic type mats for him to play on, gave him toys and books. I sat there as Dr. Blitz went over his extensive bloodwork that he had done last week. she said there were some very concerning irregularities. i thought, well ok so? she explained that she was concerned that he has something called mitochondrial disease/disorder. she said we need to see the neurologist and that possible he may need a muscle biopsy. then she sat there, went over all of her observations, the 5 tests that recker took, 2 evaluation packets done by me, my mom, and the doctors. she was telling me everything that i didnt want to hear. i sat there. i was listening. i just didnt understand. this wasnt how his appointment was supposed to go. i just kept telling myself, hold it together i think you may be misunderstanding her. but then she said it. AUTISM. she showed me where he rated on the spectrum. that was hard to see. he is moderate on the scale from mild to severe, he's right in the middle. i was just told my baby was autistic. i held it together. i kept telling myself to stay strong. i think i was still in shock. they both looked at me with a puzzled look, like maybe i wasnt getting it. because i didnt react at all. i just sat there staring at the wall. she got up to get me a tissue, which i thought was weird at first. THEN IT HIT ME.  he will never serve a mission. he will never get married. he will never have a family of his own. his life will never be what we thought it would. i finally cried & she sat there with me and went over this whole huge packet she made for me that had information about ASD. by the time i left her office it was after 12:30. i cried all the way to the car. i sat in the car for about 30 minutes sobbing. trying to comprehend how our lives have just changed completely. everything that we had dreamed for him, is gone. i cant explain how it feels to be told something like this about your child. i feel broken. i know that so many people function and live normal lives with children who have Autism, i know about all the resources and who to go to and where to get help. and i know everyone will be so kind and offer advice or suggestions, and i appreciate it, but not now. i couldnt imagine you could feel this way. that mourning feeling. that feeling of absolute LOSS. i know it will go away but for now, that is all i can feel...NUMB & ROBBED. 

I have been working with some incredible women compiling their "D-DAY" stories and asking them all the questions you sent me. My goal for this month is to help you open your eyes to how real Autism is and what Autism "looks like" in everyones homes.

If you have questions please feel free to comment below, or email me if you want to remain anonymous.