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  At first he just seemed a little fussier and maybe withdrawn.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

1 comment:

  1. What a beautiful family! Reading the insight into this mother's life and about her two beautiful children has been an amazing and lovely way to raise autism awareness. As a mother of a child of the spectrum it helps beyond words to year of other experiences. Thanks to this mom and thanks Kayla for doing this awesome project!