I was at my physical therapy office today, and while I was getting some steroids administered to my hip via ultrasound, the woman administering it and I were having light conversation. She was probably 5 years younger than me. At one point she asked me if I had kids, and I told her I had three. I said they were at my parents’ house, and that it was nice because they are a handful and “…especially Taylor.” I went on to tell her he had severe autism. She asked when I knew there was a problem, and I proceeded to tell her a very, very summarized version of how we got to the point of a diagnosis. She then asked if there were any other behaviors that I noticed besides the not talking part, and I began to think something more was involved in her questions other than just plain curiosity and nicety. I also struggled to find any other behaviors, because I am so used to his personality and it’s all become normal life for our family.
She is worried about her son. She says it doesn’t matter to her either way, just as long as they can know what it is and start doing something about it, but I know that look in her eyes. She can’t hide it from a mom who’s been there and had that same look in her eyes too. It was a look of fear, pain, and worry. Granted, it looked much less intense than the fear, pain, and worry I know my eyes displayed, but it was there. Her son is three. He can talk, but he has some quirks about him and there is something that just doesn’t fit. I tried to help her with where to go and what to do to get her son tested if she wanted to do that, but I didn’t want to be the one to suggest the news that rocked me to the floor. Even though she already thought he might have autism, I didn’t want to be the one to echo her suspicions. I tried to explain the different levels of autism and aspergers, but having to talk to another about her child in this possible light was painful for me. I remember the pain when my life was forever changed, and that white-pickett-American-dream-everything will be perfect-naiive-utopian future many young newly weds and new moms can have, was ripped away.
Dear New Mom,
I’m so sorry you have this life path put upon you. It’s hard, can be scary, painful, and full of worry. You will have to become thick-skinned and much sooner than you might think. You will receive some stares from the public, some may even criticize to your face, and it feels like everyone thinks they are in the know and will offer advice about what therapies you need to do and more. Ignore almost all of it. I’ve received so much unsolicited advice, I could write a book.
I’m not talking about all advice. You will have some well-intentioned, loving friends who want the best for you and are offering what help they can. Be honest and open about where your heart is at that moment. Tell friends if you don’t want suggestions at that time. True friends will respect and love you no matter what. You need to be real with people. Don’t hide. You will drown in your circumstances if you do. Some friends and family might distance themselves. My husband has some family that just don’t understand. Many people’s first advice is to let it go, but I think that invalidates and ignores your feelings. It hurts, and it will make you angry. Own up to that, and don’t feel guilty for those feelings. Tell those people, with respect, how you feel if you think that will help. Don’t expect anything to change. It may not, but at least you were honest and did all you can. But don’t feel bad if you choose not to speak your heart. I didn’t do it either. Not everybody is built the same. And in the end, you will have to let it go, but don’t ignore and deny your feelings first. You are a human and stuffing hurts can hurt emotionally and physically.
Also, don’t worry about using the “correct” terminology. Don’t feel forced to say neuro-typical if you don’t want to. We all know what that stands for…normal. I know people may get their feathers all ruffled up about the “normal” word, stating that “nobody is normal” blah blah blah. While that is true, there is no absolute normal, there seems to be a general unwritten understanding of what qualifies as normal. We don’t feel normal, and our kids aren’t normal. Hence why there is a regular classroom and a special needs one. I think that says it right there. “neuro-typical” and “normal” mean the same thing to an autistic child…something they are not. So don’t worry about what term to use. Focus on making your child feel loved, special, valuable, and important.
Your doctor bills might be high, for a long time. You might learn more medicine names, medical terminology, and so much information you might as well be given an honorary doctorate in child psychology. You may have to deal with hyperactivity; Lord knows I have to. You may have to deal with seizures, food allergies, texture aversions, sound and light aversions, random uncaused tantrums. You may, after a while, no longer be able to take your child out anywhere. Restaurants might be tough. Schools might be stressful. IEPs send me home crying each yearly meeting. You will learn all the acronyms and terms: IEP, DLC, LRC, EGC, fully inclosed, neuro-typical, DD services, PT, OT, speech therapy, and ABA. Insurance companies can suck. You might have a slew of doctors:psychologists, psychiatrists, neurologists, dentists that work on autistic children, doctors that deal with bone and muscular issues, allergists, physical therapists, occupational therapists, speech therapists, and more. You might not have much money left…know you are not alone.
Sadly, your child may wander. This is scary, and I found it hurts a little because it’s hard to not feel like he wants to run away from you…his mom. You might find you know the police officers by name as they help find your son each time he runs off. I pray they are as understanding for you as they were for me. You son isn’t running because he doesn’t love you and wants away. He is running because he may be bored, curious, or just wanting to explore. They don’t understand the danger or how much and why it scares you. You will have to make your house like a fortress. Making the windows only be able to open 4-6 inches, special locks on the doors that require a code to open, or double-sided dead bolts that use a key. You may have to check on your fridge often to prevent food from spoiling because your child left the door open in the middle of the night. You might need a fridge lock because they might get into certain food and make themselves sick or get it all over the house.
Get a disability case worker through the county. They can help you get resources you need that you thought weren’t there. They aren’t miracle workers, but they can really help.
The special needs school program is very helpful and crucial for your child to thrive. They are trained to know how to help your child. But, don’t be afraid to speak up for your child. You are his mom and have a very important perspective and valuable input. Even in the most amazing school situations, you will have moments of disagreement. You and the school love your child, and both want the best for them, but sometimes the ideas of what that is are different. Don’t be afraid to speak up. Each year you have an IEP meeting. This is where you discuss with the teachers and support staff about your child’s development: where they are and goals to reach where they need to be and how to do them. It’s hard not to come away from them with tears, as there is a lot of focus on deficits. It stings, even after 7 years of them.
You so badly want your child to be normal, to snap out of it, to connect with you…You’d do anything to hear the phrases from your child that mom’s with normal children complain about. You will get jealous. And grieve. You get jealous of the vacations and trips to Disneyland that you can’t take because not only can you probably not be able to afford them, but the plane ride might be impossible, or the fear of them getting lost as almost a guaranteed keeps you from even thinking about it. You don’t get the playdates like other parents. It’s too hard to bring your child to someone else’s home. Your child may be bullied or abused by children at school. They may be mocked. Know that even though your child may seem to not notice, they do, and it deflates them. Don’t be afraid to stand up for them. You have a lot of support from parents of autistic and non-autistic children, backing you.
And what I feel is the hardest thing…You may have to consider putting your child in a care home. It may be at 18,19, or 21. It could be 10. It depends on the child. I say this because this is my reality. I wish someone had warned me of this when my son was little. No one told me that this is part of the journey for a lot of autistic children. As he grew older I knew that this was inevitable for my son, but I always assumed with surety it would be after high school when everyone else is saying goodbye to their kids as well, sending them off to college or to work and stand on their own two feet. At least this way it wouldn’t feel so glaringly different from everybody else. It’s just his destination point that I had to reconcile with. I had resigned myself to this, and then puberty happened. Aggression crept out. Running away began. And then people started suggesting the idea that he would possibly have to go into a home before being an adult. My son is 10. He’s just a child. Who imagines sending your baby to live away from you, while the rest of your family stays together. I wish I would have known. I would have done so much so differently. I would have cherished and appreciated the time I had with him at each stage as he grew up. I thought, Why didn’t anyone tell me, warn me this might happen? Grieving the possibly just around the corner loss of your child, breaks you in two. When will I get to see him? We see him all the time right now because he is with us, but living somewhere else, realistically how often could we really visit him? Will he feel abandoned? I will miss him so. What will I do without him? How will we be able to eat dinner knowing he is eating somewhere else? Will they treat him well? Love him like I do? Did I fail him? What will my other kids think?. These thoughts and more will go through your head. You may even at times think of the rest and relief if he was in a home, and you feel guilty. Please don’t be so hard on yourself. You are tired, worn thin, and struggling. That’s just your situation talking, not your heart.
You may not have to deal with some of these things. Your child may be able to function much more, and if so I am so happy for you. Yet, I know your struggles will still be there. Each parent struggles with different things and in different ways. Autism is so hard on a family and on the child who has it. They feel trapped in a body, not able to express themselves.
But autism can be beautiful. You will learn how to love unconditionally, even when your child doesn’t show it back. They have an innocence that doesn’t go away, and their pure fascination with even the simplest of things teaches you to stop and enjoy the things of life we would have overlooked and taken for granted otherwise. Like the sky, water, sand, jumping, dancing for no reason other than to move, blowing bubbles for hours, seemingly random notes on the piano, birds flying, cat whiskers, and more. They have a unique way of looking at the world that without them you never would have had the chance to see. They truly do “stop and smell the roses”. It’s beautiful.
I’m writing this because one night, as my husband and I were in bed after a very taxing Taylor day, I started to cry…hard. I wondered, Why did no one warn me? Why didn’t someone tell me this would happen? Why wasn’t this brought up when he was younger? Why didn’t anyone prepare me, tell me, that one day we might lose him?
See, we are having the conversation about how long Taylor can stay at home with us, and where he will go after. I had to face the idea years ago that one day he would have to leave home, and most likely it would not be to an independent home of his own. He was headed to a group home. What I hadn’t thought of, until now, is that it might have to happen while he is a teen; maybe even an early teen.
He’s just a child, a boy. No one imagines losing a child, and it never enters a typical mom’s mind that one day she would have to give him away to a new home. He is my baby, still in my care. You are supposed to care for, nurture, and provide for your children until they are adults and move away. This isn’t supposed to happen. Why didn’t anyone warn me?
This isn’t coming from an angry bitter why, why, why. It is from a broken heart, wishing she had known. Wishing she had done so many things differently. Praying that God would forgive her and grant her just one more year with her son. Then she will beg for another…and another…and another. She will cry because she fears she failed. She wants one more chance to get it right.
So you see, new mom, I felt the need to warn you. Appreciate each day you can with your child. Notice I don’t say every day. Some days will just plain suck. Feel free to not enjoy those days. Don’t feel guilty because you aren’t reveling in delight from the screaming, pinching, hitting, bruises, crying, meltdowns, and more. It’s hard. Just try and see it in the light that you know one day your baby may have to leave.
Lastly, the only reason I have survived this journey is Jesus. It may sound cheesy, or some cliché thing to say, but it is true. My faith hasn’t been perfect, but he provides hope for a better future, and assurance that I don’t suffer in this life for nothing; That one day, I will be honored for the hard work I have put in…the bruises, scratches, lost sleep, tears, worries, frustration, patience, and perseverance. Trust me. It will all be worth it.
Much love and prayers to you and your family. You are a good mom!
As always, positive comments are welcome. Negative hurtful comments will be trashed before I can even finish reading them. I have many readers who are emotionally vulnerable, and I will not post comments that will further harm.
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