Raising A Child Living With Autism
*I had reconnected with an old high-school friend on facebook and over the years, through her posts, I have gotten to be a part of her autism journey with her daughter. Mallorie is heavily involved in the autism community. I have heard bits and pieces of her journey over time and so I asked her if she would please compile her whole story to share with my Breastfeeding Mama Talk followers. She gladly agreed.
My name is Mallorie. My fiance and I have two beautiful daughters together, Madasun Lee and Morgun Marie. One has Autism and the other does not, both are smart, amazing and incredible souls.
I don’t know exactly where to start, the beginning I suppose. We found out we were expecting when I was at a doctor’s appointment for an issue with an ovarian cyst I was having. My doctor came in and told me that I was pregnant but with a worried look on her face she said the amniotic sac was empty and that a D&C would need to be scheduled. Seeing how upset I was she tried to comfort me by saying “sometimes things like this will happen if it is God’s will. Sometimes if something might be wrong with a baby and he doesn’t think the family can handle it or should be put through it” but seeing that her attempt at comforting me did not really help she decided to do another ultrasound before the D&C appointment just to be positive. I prayed every day “please god let our baby be there, please let he or she be healthy lord, and if there is anything different please lord, I promise we are strong enough. we will love and care for this baby and be everything he or she deserves.” On November 20th at 12:30pm my first born child was placed in my arms. A healthy, precious, 9lbs 3oz 21inch long little girl. Our Madasun Lee. When you are handed your newborn baby and they have 10 tiny fingers, 10 tiny toes, everything is in the right spot, they pass all their health checks and you are sent home, you don’t expect that later down the road you will learn your child is different.
My pregnancy was the definition of healthy, not one complication. Never a need for medicine, not even Tylenol. My labor and delivery was also smooth and what some would say perfect. Madasun she only had on issue, chronic double ear infections that lasted until she was two years old. Other than that she was healthy and what we thought a normal baby.
She developed typically and in some areas was advance in development. She completed puzzles, could point out shapes and sorted things by color all before she was 6 months old. She could stack blocks higher than her head at seven months old. She had advanced problem solving skills before she was even 9 months old. At 2 years of age she dialed in our telescope to the moon for the first time.
Come to find out this behavior wasn’t “normal”. She liked to line things up in elaborate patterns,she flapped her hands when she was excited or upset, and then when she still was not speaking by age one and a half we knew something might be wrong or what I like to say different. Her pediatrician decided to refer us to early intervention Arizona for speech therapy in addition, he referred us to an ENT since she had such horrible ear infections we all thought maybe it could have been her hearing was damaged. After she had P.E.tubes placed in her ears the ear infections stopped immediately. She still was not speaking. When she passed her hearing test perfectly we knew it was something more.
Her speech therapist mentioned Autism and sensory processing disorder. Her pediatrician had mentioned this as well, so we weren’t completely shocked to hear those words. It took a little over 2 years to get the final diagnosis but she was in the end diagnosed with autism. Her diagnosing doctor was very puzzled by her because she showed traits from all over the spectrum but since her communication skills were basically non existent it was hard to tell the extent of her intelligence. I already knew but you still hold out just in case. Some say you should mourn the loss of the hopes and dreams you had for your child because they are now gone however I don’t think that that is true. I wasn’t going to let this diagnosis put a limit on her or stop her from having the life that she deserved or for us to dream big for her. I decided then I could either mope around and ask why me, why her why our family, why God ,why is this happening to us? It happened, it was supposed to happen she was born to be this way. It isn’t all of who she is but it is a part of her. so I chose to ask how.
How can I help her, how can I help others, how can I make the world accept her and others like her? I threw myself into research and advocacy. I work with her on a daily basis, always believing in her. I started a Facebook page called Autism mommies to have parents be able to connect with one another and so that I could spread education and awareness and that we could help each other in any way that we could on this journey that many of us have been chosen to take. I recently started last year an Autism and special needs foundation in my community and a support group for families with children on the spectrum or with other special needs. Hoping to bring more awareness to my small community and more resources to the children who basically aren’t offered much here. Once my medical degrees are finished I plan on continuing my education in special education and ABA therapy so that I can offer therapy to these families in my community so that their children can have the opportunity to have the tools that they need to succeed.
Two years ago Madasun wrote her name for the first time. Tears of joy filled my eyes as I held that piece of paper in my hands. About a year ago is when she started making really big breakthroughs. Some of the doctors said she’d never say a word, she would never write anything, do anything or learn anything but we refused to ever let that opinion stand in our way. With each new word she speaks, and each new word she writes and each new thing she learns our hope grows stronger. Madasun is in kindergarten she receives special education with mainstream integration. She gets speech, OT and ABA therapies at school and is doing amazing. She has a great team of supporters. When she was about 3 1/2 years old I noticed that during our learning time she pointed at things when I would ask a question, then I realised she was answering by pointing. So I bought a ton of picture books, geography, astronomy, animal books, human body books etc. I downloaded PECS pictures which are an amazing tool for non verbal children. Using PECS is a way for a child with autism to communicate, it can also help children on the spectrum verbally communicate. Madasun was 100% non verbal she is now 65-70% and improving more and more. PECS really helps fill in the communication gaps she has right now.
We got her a tablet and downloaded a bunch of learning apps, and autism apps. The PICS app we have specifically is amazing because we can add real photos not just generic ones. For example mommy-picture of me, Daddy picture of Thomas, Her cup, her bed, her dog etc etc it has a sentence area where you drag the pictures to and then tap when you are done and it reads the sentence it has been very helpful. It is touch and go speak on Google play.
Madasun knows so much, she can’t talk completely so it’s hard for some to see that. She knows a lot about astronomy, she knows all the planets, different solar systems, constellations, moon phases. She knows the different oceans, 20 states and their capitals, she can point to the bones in the human body as you say them, as well as different parts of the brain. She’s creative and talented. She sings, she dances. She’s painted pictures and when you look at them you see that it’s the milky way, you see the Earth, Mars, Venus, Saturn, Uranus, Mercury, Neptune, Jupiter, the Sun the stars, its amazing. She understands every word that we speak. Some non verbal individuals with autism have gone their whole lives without speaking and some doctors say that they have the capacity of a one , two or three year old but then they learn to type and they type out these intelligent, extravagant paragraphs saying they understand. That they feel trapped within their body, that they don’t have control over. (Google Carly Fleischmann). Also check out the book I Am In Here by Virginia Breen and Elizabeth Bonker. It is so important to try to get your child to communicate in some form and to always watch what you say and what others say in front of them because they do hear us and they do understand us, we just need to start understanding them.
My daughter is an inspiration to me she is amazing and unlike any other person I know. She and other individuals with autism are extraordinary. They are intelligent, kind, genuine, they don’t understand hatred, they don’t hold grudges or judge others. They accept everyone and they see the world differently than we do. They can teach us more than we can teach them in all honesty. Autism is not the end of the world it’s just the beginning of a new one a different one. It is hard and has it’s challenges. Some children are so severely affected while some are mildly. Madasun has intense sensory meltdowns, she gets frustrated, some nights she doesn’t sleep much. I feel like most of the time I am running on autopilot. She has never said mommy I love you, but she does in her own way. When it comes to autism you have to learn to listen with your heart. You need Patience and strength but it’s OK to breakdown, its OK to cry or get angry or jealous but it is important to not dwell too long in these dark spots on the autism journey because they can keep you from moving forward, but a pit stop when you need it is OK. You aren’t a failure for breaking down. There is a ton of resources out there and the autism community is a large and loving one. You are not alone and your child can best this. You will face doubters, and ignorance. I’ve had complete strangers call my child a retard, yell horrible things, stop and snicker at the store, people I know say hurtful things about my child , been told to “beat the shit out of her” been ridiculed and put through the ringer. But you know what at the end of the day I pity them, because they are blinded by ignorance and only someone with an ugly heart can be cruel to a child with special needs.
*If you have a child living with autism or you suspect it please read the following information:
Now that you know more about us I want to share some autism info with you, in case any of you are new parents, suspecting parents or any parent because EVERY parent or person in my opinion should know about autism. So that you know what to look for in case your child has autism or if a family or friend has a child with it or maybe you are simply a person of society who should know the signs in case your child goes to school with one of our children or so that instead of in the grocery store stopping and staring and judging you can simply smile and walking on. here are some of the “main” early “red flags” that may indicate your child is at risk for an autism spectrum disorder. If your child exhibits ANY of these please don’t delay in asking your pediatrician or family doctor for a referral to a developmental ped. No big smiles or other warm, joyful expressions by six months or thereafter:
*No back-and-forth sharing of sounds, smiles or other facial expressions by nine months
*No babbling by 12 months
*No back-and-forth gestures such as pointing, showing, reaching or waving by 12 months
*No words by 16 monthsNo meaningful, two-word phrases (not including imitating or repeating) by 24 months
*Any loss of speech, babbling or social skills at any age
*If your child has repetitive behavior such as lining up objects , coordinating objects, spinning things, rocking , spinning , etc
*Hand flapping or peculiar hang movement when upset or excites
*Poor eye contact/Parallel play etc.
~Also, The M-CHAT (Modified Checklist for Autism in Toddlers) can help you determine if a professional should evaluate your child. Autism Speaks has a simple online survey available. Again,if you are concerned about your child’s development or If the answers suggest your child is at risk for an autism spectrum disorder, please consult with your child’s doctor and See a developmental ped. Also you can contact your states early intervention program and they will evaluate your child and come to your home and work with them and they also get them in to preschool early. It is important too that you remember ASD is a spectrum disorder and no two kids are alike. It ranges in symptoms and severity from individual to individual and some kids show signs later than others. Some kids play with peers, others don’t, some stim some don’t, some line objects up some don’t and so on. Individuals with Autism are very bright, most have average to above average IQs. I mention this only because one of the biggest misconceptions is that if you have Autism then you are completely disabled mentally and have a very low IQ, this is not the case. While some kids are extremely severe, most are moderate. Also another misconception is that if your child speaks then they don’t have Autism , not the case, many are non verbal for a long period of time, some for life , But not all, many kids with ASD speak just fine and hit normal communication. Autism spectrum disorder (ASD) and autism are both general terms for a group of complex disorders of brain development. These disorders are characterized, in varying degrees, by difficulties in social interaction, verbal and nonverbal communication and repetitive behaviors. With the May 2013 publication of the DSM-5 diagnostic manual, all autism disorders were merged into one umbrella diagnosis of ASD. Previously, they were recognized as distinct subtypes, including autism, childhood disintegrative disorder, pervasive developmental disorder-not otherwise specified (PDD-NOS) and Aspergers syndrome. ASD can be associated with intellectual disability, difficulties in motor coordination and attention and physical health issues such as sleep and gastrointestinal disturbances. Some persons with ASD excel in visual skills, music, math and art. Autism appears to have its roots in very early brain development. However, for most individuals, the most obvious signs and symptoms of autism tend to emerge between the ages of 2 and 3 years. Autism statistics from the U.S. Centers for Disease Control and Prevention (CDC) identify around 1 in 88 American children as on the autism spectrum–a ten-fold increase in prevalence in 40 years. The CDC has reported that Autism is prevalent in 1 in 50 children in parent reported cases among school age children. Studies show that autism is four to five times more common among boys than girls. An estimated 1 out of 54 boys and 1 in 252 girls are diagnosed with autism in the United States. ASD affects over 2 million individuals in the U.S. And prevelance rates vary from state to state, for example UT has 1 in 49 children on the Autism spectrum! and affects tens of millions worldwide. Government autism statistics suggest that prevalence rates have increased 10 to 17 percent annually in recent years. There is no established explanation for this continuing. Therapies such as speech, OT, Sensory integration, applied behavioral analysis(ABA), floor time etc can help tremendously. Elimination diets have I helped some children with autism it is important to remember that each child is different and what works for some children doesn’t work for all children these elimination diet include gluten free and casein free diet special carbohydrate diet and the Feingold diet. Supplement can help as well since most children with autism are extremely picky eaters and lack the normal amounts of nutrients that the body needs to function properly. When we took red dye, gluten and dairy from Madasun’s diet and added omega 3 fish oil, and magnesium the change in her was astounding. Lavender essential oil has also proven to be a godsend for our family during a meltdown I can put it behind my daughter’s ears and on her feet and she can go from being a complete maniac to being completely calm it also helps with sleep issues. Most children with autism have severe sleeping issues this is due to either sensory problems or melatonin deficiency. You can consult with your doctor for course of action things like weighted blankets and other sensory products help and sometimes melatonin is a good approach over heavy duty sleeping meds but you should consult with a physician or neurologic just before doing any kind of supplements. As the 100 day kit, challenging behaviors kit toilet training kit dentist kit, IEP kit(must have!) School community toolkit another must-have. Below you will find links to the Autism Speaks took kits, their diagnostic screening tool and much more. I am also providing links to the Autism research institute, talk about curing autism now, Raising Special Kids, and Carly Fleischman’s website. As well as Autism Mommies Facebook page and the Madasun Lee Foundation’s Facebook page.
Having a child with Autism has grounded me. It has taught me more understanding,acceptance, patience and compassion. It has taught me to be more resourceful and determined. It has taught me inspiration, appreciation and strength. A type of strength I never knew i was capable of having. Having a child with Autism has taught me new ways to stand up for what I believe in, educate and advocate. It has taught me the beauty of being different. Having a child with Autism means your life isn’t an easy or “normal” one, but that doesn’t mean it is not a good one. It is a different, challenging, beautiful and extraordinary one.
Yes, I wish my child would talk. I wish I could hear “i love you mommy” or hear what my child is thinking or what they did at school. I wish that certain things didn’t cause them to have painful sensory overload and suffer meltdowns. I wish we could go to a restaurant, a dance recital instead of therapy. I wish my child could sleep normally instead of staying up til 3 and 4 am. Or waking several times a night. I wish my child would eat more than 10 things. But I am thankful it was Autism and not leukemia. I am thankful I can hug my child. I am thankful my child smiles, can walk and run, that my child can see, and is healthy. I am thankful my child laughs, cuddles, sings and learns. I am thankful my child is making progress, no matter how big or small, no matter how fast or slow. I will celebrate every milestone she reaches no matter how slow, and no matter what I will never lose hope or the faith that I have in her. Thank you Madasun for all the magic you taught me to see in the world that others are often too busy to notice. You inspire and amaze me every day and I would not change our crazy, hectic, beautiful life for anything this world has to offer. I am proud that the lord chose me to be your mother. I hope this has helped at least one person.
Mallorie Rich
*I’m so glad to have reconnected with Mallorie. I know her story needs to be shared. People need to know that just because their child may be on the autism spectrum that their life still matters and that there is hope. There is a WHOLE community out there with passionate advocates like Mallorie Rich motivated to help. If you have ANY questions, concerns, or just need to let out a vent with your autism story please do not hesitate to message Mallorie on her Autism Mommies page. (HERE) – OR herThe Madasun Lee Foundation Page found (HERE)- She is ready and willing to do whatever she can to help you with your autism journey.
~Kristy Kemp
