She has seen me at my ugliest and still loves me for who I am and is always there to life me up when I need it. The boys and I thank you Nana! I am honored to share her story that was in the local newspaper tonight.
**The reader needs to keep in mind as they read this article that autism is a “spectrum disorder”, meaning simply that it affects every child differently and presents itself in varying degrees,…from mild and very high functioning to profound. Unfortunately, we have been told that my grandson, Trenton, suffers from moderate to severe autism. We will never give up on him. We continue to advocate for him and all the children affected by autism everywhere. Trenton is still non-verbal, so we are his “voice” until the day he can find his own.
Two years ago I could not have imagined myself submitting an article such as this for the paper. Some of the readers may recall that I placed an article a year ago for Autism Awareness about my grandson, Trenton, and our family’s journey with this misunderstood disorder. Autism has been described as the most difficult developmental disorder for a community to understand..a doctor to treat.. and a parent to explain. Trenton was diagnosed with autism a week before his 2nd birthday.
Autism is a developmental disorder that affects speech, communication and social skills. It is growing at an alarming rate! It is hard to talk to anyone that doesn’t know of someone that has been affected by this “life changing” disorder. Autism doesn’t announce its arrival when it knocks at your door. No, it is more like a thief in the night. Autism slowly creeps in and for a short while you don’t even know it is there. Then, you start to notice things that aren’t as they should be about your child. First, it may be that he starts to ignore you when you speak his name…he isn’t looking into your eyes as much when you speak to him…he seems to be slipping into a world of his own….he doesn’t engage with you as much..all of a sudden he may not want to be cuddled anymore..he starts throwing tantrums that seem to sweep over him like a tidal wave..he loses precious words he used to say..he seems to be “fixated” on objects more than people…he doesn’t notice his surroundings…he may be scared of new places and different environments…he doesn’t transition well from one setting to another..he thrives on sameness and routine… or your child may not sleep well at night.
It would be heartbreaking to see a child leave this world before you..before they were supposed to. It is also devastating to lose a child to autism and watch them slip away before your eyes to a world of their own. There are no words to describe the pain and grief this puts on parents, grandparents and extended family.
Autism is difficult for professionals to treat, as all individuals are affected in different ways and what works for one child may not necessarily work for another one. Children are most often diagnosed between 2 and 3 years of age. In a lot of cases, you think you have been blessed with a perfectly normal, happy baby until around this age. Doctors will tell you that you can try the diets, supplements, or medications to help control the anxiety and other sensory issues your child may have, as well as therapies, but as far as a “magic cure-all”,.. sadly, there just isn’t one and that is a bitter pill to swallow for any parent. There are many more therapies available today than years ago and we are so thankful for that. Some of those therapies are speech, occupational therapy, physical therapy, ABA (applied behavioral analysis therapy), music therapy and horse therapy. These therapies have been proven to lessen and improve the many symptoms associated with autism.
Having a child with a disability has been described in a short writing by Emily Perle Kingsley. She compares it to preparing for a “dream” vacation to Italy…an experience you have planned for and looked forward to for a very long time…booking your flight…buying all the guide books..planning all the details of what you will see and do..packing your bags…but when the much anticipated day arrives and your flight lands…..it is announced that you have arrived in Holland instead. Holland? You hadn’t planned on Holland..you have to buy new guidebooks..you must learn a whole new language... Holland isn’t a terrible place..it is just different…NOT where you had hoped to be! Everyone else is talking about Italy and all the fun they had there..and you think…”yes, that is where I was supposed to be…those are the things I was supposed to do and see”.
Truthfully, this is not even close to actually describing what it is like to be told your child has autism.…Not that beautiful toddler with the smile that can light up a room..the child you had hoped and prayed for..planned for..bought all the guidebooks for…has autism. Autism? That is something that happens to other people UNTIL it happens to you. We love Trenton for what he is….and not what he could have been. I don’t allow my mind to drift to the “what ifs” as much as I did at first, but there are still days filled with pity parties, especially after being somewhere and seeing children Trenton’s age and what they are doing and how much they are talking. It is just hard…. very, very hard.
The day my daughter called from St. Louis and told me Trenton was diagnosed with autism. I hung up the phone and cried for two weeks. The raw grief and pain came over me like a tsunami. My beloved grandson had become my “Holland”. My first grandchild…the one I was supposed to play with..laugh with…read to..take to the park while his mother worked..take out to eat..watch play Little League..I could go on and on…but you get my drift…normal things that grandparents get to do with their grandchildren. Recently my husband and I were eating in a restaurant in Effingham and as I looked around, we were surrounded on all sides by little boys with their parents about the age of Trenton. They were all chatting away with their parents and having so much fun. It was like a dagger to my heart and I sat there through the rest of my meal holding back the tears. That is what Trenton should be doing..laughing.. looking around…having fun eating out with his mom and dad and little brother. It is difficult to see normal families doing normal things. It is just a raw reminder of what Trenton is missing out on and the simple pleasure of enjoying your grandchild. We have arrived in Holland instead.
Any simple outing with Trenton is always stressful. To take him to a park for instance to play is even difficult because a child with autism often has no concept of danger. Therefore, Trenton will run away and does not come back when you call his name. Outings to Wal-Mart are difficult because he cannot handle the noise and oftentimes he becomes over-stimulated.
Trenton is now 3 ½ years old and has been in speech, occupational and behavioral therapy for two years. His improvement in some areas has been phenomenal but very slow in others such as his speech. He continues to have good days and bad days. It is still one step forward and two back. He is still basically non-verbal. He has no functional speech. However, he can name objects. He knows his colors, ABC’s, can count, he knows his shapes and can say most all of these. He can also read and type simple words on his iPad. To our amazement, he has even learned to type his own name on the iPad. His understanding of receptive language has probably improved the most over the last couple years. Recently, at one of his sessions, his therapist was working with Trenton with flash cards. They were shapes, colors, objects, etc. Trenton kept motioning for her to turn the cards over to the side with only the word..i.e. blue..red..orange..square..rectangle, cat, dog, etc. and he said the colors and most of the shapes just by reading the word!!!! Amazing! I am not sure he will learn to read by phonics method. He may have a photographic memory as is the case with a lot of children with autism. This will make it difficult for him to read some words., such as pronouns, verbs, etc. I have to include a little levity in my writing. I think Trenton has a little of his mommy’s stubbornness in him. At my house recently, Angie took out Trenton’s iPad and asked him to show his Nana and Pops how he could type. He stood there for a second as if trying to think of what he wanted to type and finally typed…CAT and said “cat” very plainly. Then, he typed the word..STOP, and turned the iPad around. This was his way of telling us he didn’t feel like showing off his typing skills right then. So you see, there is a lot of a “normal little boy” trapped in that precious body.
I have learned that a hero doesn’t have to have a cape and be able to leap tall buildings in a single bound and rescue people from a burning building. No, a hero can be a little 3 year old boy that has no understanding of the world around him. A little boy that has no voice to tell even his own mother when he is sick….where he hurts..what he wants to eat…or even express his love for her. Our little Trenton is the bravest little boy I know. He fights battles every day that I can’t even imagine.
I am sure a lot of the readers still wonder….what would it really be like to have a child with autism?...
- · It’s wanting to suddenly become invisible when you are in a public place and your child starts to have a meltdown because you can feel the stares.
- · It’s like dying a little bit inside every time your child does something inappropriate for his age and others around you may stare or even giggle
- · It’s wondering every single day if your child had been normal what he would be doing, or how much your life might be different.
- · It’s hating it when other people talk about their vacations or weekend get-a-ways when you just wish you could take your child to McDonalds.
- · It’s not being able to simply call up a babysitter and enjoy a night out with your husband because you know no one would be able to handle your child.
- · It’s wondering why you bought so many toys for your child..i.e. toy tractors, trucks, etc .because your child doesn’t know how to play with them anyway.
- · It’s taking on the enormous responsibility of educating everyone around you….your friends at church, the school personnel, family , your neighbors and community; and then, even after you have done this, you realize there is still no way they can possibly understand so what is the use.
- · It’s feeling embarrassed when you are in a public place and someone tries to engage with your child; perhaps by asking them what their name is. Of course, your child doesn’t even act like they hear, so you make yet another feeble excuse for him. “Well, I think he is just tired today.”
- · It’s never knowing when your head hits the pillow at night how long you will be able to sleep ..never knowing when your child will wake and have you up for three or four hours in the middle of the night often pacing the house. Because of this you wish you had bought stock in Folgers!
- · It’s thinking about everything you have read or others have told you about discipline and realizing that none of that applies to your child. It is trying to get others to understand this as well.
- · It’s listening to so many people say. …“I don’t know how you do it.”..when you didn’t realize you had a choice.
- · It’s just wishing for once you could just talk for a few minutes to someone after church services instead of having to bolt to the door as soon as the last “Amen” because your child is pulling at you wanting to escape the noise and people surrounding him.
- · It’s beginning to hate…Tee-ball..swim lessons..basketball games..and all the “normal” things your child should be engaging in but will never be a part of.
- · It’s wondering what it would be like to relax of an evening and watch a movie on T.V..instead your evening is spent watching your child pace back and forth across your floor trying to release all his anxiety from events in his day….watching him do this for hours sometimes before his body will let him fall asleep.
- · It’s feeling so alone and left out…kinda like you live on a different planet in a faraway galaxy… because everyone else is going on about their life in a normal fashion and nothing is normal about your life and you know it never will be again.
- · It’s watching in agony as your child attempts to tell you what he wants or what hurts, but the words won’t come out…..because of his frustrations, a meltdown often occurs. (and why wouldn’t it)….can you even begin to imagine what this would be like?
- · It’s watching your child live every single day in a world he doesn’t understand.
- · It’s crying out to God and asking him…Why?..why autism? Why my child? … then realizing that the Creator doesn’t have to explain why to the created. That would be like the clay asking the potter why he was made a bowl instead of a plate.
- · It’s trying not to think of what the future holds for your child, but you do anyway……. daily.
- · It’s feeling guilty for dreading your child’s birthday because it is just another reminder as he gets older of how much he is behind his peers and also the grim realization that he doesn’t even realize what a birthday is anyway.
- · It’s after a really bad day praying to God to make Trenton the little boy he was “supposed” to be. Then you feel so ashamed because you know deep down that he is exactly the way he was “supposed” to be.
- · It’s telling your child every day that you love him and wanting to hear him say he loves you too so much it hurts….or, at the very least, some sort of hint that he understands
- · It’s knowing that this child you love so much is truly a “gift” from God.
- · It’s after day after day of struggles, tears and frustrations realizing that this circumstance in your life has made you a stronger person. Hopefully, a better child of God…it has taught you patience, love like no other and more empathy and compassion for others.
- · It is having your faith tested day after day after day, but rejoicing in the end when you know in your heart that God really does care about autism and that He is our strength and refuge in times of trouble.
As a grandmother, I relish every single moment of “connection” with Trenton. If it is a glimpse into my eyes, even if it is only for a few seconds, or that gorgeous smile he has that lights up my world. I thank God when those moments occur because they don’t every day. I haven’t heard Trenton say “Nana” for two years, but I pray for the day I will hear it again. It is one of the words he lost when autism slipped in and slowly took him away from us when he was around 18 months old. It is also one of the first words he learned to say. I have albums full of pictures of Trenton when he was a baby, but I cannot bear to bring them out and look at them. It is too painful. It is before he quit looking at the camera with that huge smile of his..before he lost all his words..before he stopped engaging with us..before we arrived in Holland. Before our life was changed forever!
Life with autism is very hard with daily struggles and frustrations. Raising a child with special needs is a 24/7 undaunting task. Every day brings new challenges and the roller coaster of emotions is indescribable. There are many days when we feel like we are drowning in a deep, dark abyss. Those are the days when the “what ifs” set in. I know God is there for our family. I know he hears prayers going up for our little Trenton daily. That is why we have to climb from the darkness and look to the light; the light of our risen Lord and Savior who is by our side through it all. Yes, autism has taken away a lot from our lives and for my daughter, even a career she had hoped to enjoy. It has transported us to Holland . However, there is one thing autism can NEVER take away and that is our hope and sheer determination to be the very best advocate for our Trenton that we can be. We have learned, afterall, as Emile Perle Kingsley put it so well in her writing, that although our life’s journey took a detour and we didn’t end up where we had dreamed we would be, there is a lot of beauty where we are at. We love Trenton unconditionally and he continues to amaze us every day! He is our little warrior fighting bigger battles than most of us can imagine every single day! We love Trenton unconditionally just the way he is…the way he was supposed to be! Thank you God for entrusting our family with this beautiful child..this perfect gift!