One mother shares her journey with her special needs child.
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When our son was two years old, I suspected he had autism because of some specific behaviors I observed in him. When he was three we received the formal diagnosis. I clearly remember that day and that even though I fully expected to leave the doctor’s office with that diagnosis, for whatever reason it was still difficult to hear. I choked back tears the entire two and a half hour drive back home.
A year later, I’m definitely in a different place with it, have owned the identity of having a son with autism, and can tell you that I’ve learned so much. Yes, I’ve learned more than I already knew about autism, I’ve been schooled on school and IEPs (Individualized Education Plan), I’ve discovered who my true friends are, but mostly I’ve been educated firsthand by my adorable little guy. I’m sure my husband and our two older daughters would hold the same sentiments.
This is certainly not an exhaustive list, but probably the most significant lessons I’ve gleaned in a year’s time of raising my son with autism. These lessons can benefit fathers with autistic children as well as anyone who is part of an autistic child’s life.
1. Patience is a must.
I still don’t have as much patience as I’d like, but I have made a conscious effort toward being less impatient and less demanding. Well, of him anyway. I can’t say the remainder of my family would attest that they receive the same amount of tolerance from me.
It’s a daily fight within myself to put aside my selfishness and attend to his requests, but it’s worth the effort for him to know he’s loved, accepted and cared for.
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Let’s face it: it’s ridiculous to lose your patience with the child who is upset that he’s unable to effectively communicate his needs. That just creates a snowball effect and everyone ends up exploding or crying. I can take a lot more annoyances, distractions, interruptions, messes and destroyed household items from him now than I would’ve been able to a year ago. Or two years ago. It’s a daily fight within myself to put aside my selfishness and attend to his requests, but it’s worth the effort for him to know he’s loved, accepted and cared for.
2. It’s okay to grieve.
I’ve had a little practice with this one. Our oldest child has a severe visual impairment that prevents her from doing everything her peers can do. This was heartbreaking for all of us when all her peers began driving, and knowing that may never be an option for her. We all grieved over that one, and plenty of other smaller issues that came along that same path.
Since our son has autism and the same visual impairment as his oldest sister, he’s even more limited. Will he ever be able to play ball if he wanted to? Will his peers make fun of him because he’s “different”? Will he always live with his Dad and me? I don’t have the answers to those and a million other questions that have crossed my mind. I have learned to grieve those probable losses (and just like any grief process, some days are better than others), those dreams we have for our kids that will likely never come to fruition. So it’s okay to grieve, but it’s not okay to stay there. If I dwell on what might not happen, I’ll miss out on the really great things that are happening.
3. He needs unconditional love.
This one may seem like a no-brainer. Any parent would say that they love their children unconditionally. No strings attached. No expectations. Just love. But what about when the child’s needs put a great strain on the marriage? What about when you’re the only parent available to deal with the special needs child as well as all your other “typically developing” children and their soccer games, dance practice, after school babysitting job across town, and homework? What about fixing dinner and preparing for that big project at work? What about when the child’s medical bills are piled high and there’s a whole lot of month left at the end of the money?
Is it tough to love him then? I hope not. It hasn’t been too hard for me, anyway. If anything, it’s made me love him more. Perhaps I’ve been given a supernatural dose of grace and mercy.
4. I don’t care what others think.
I used to. Especially as a teen and young adult. I suppose we all go through that, at least to some degree. But learning to accept my children for how they’re made and who they are, and learning to advocate for them (more on that in a bit), I’ve become more accustomed to the idea that their needs are infinitely more important than someone’s perception of me. I don’t have to measure up to anyone else’s standards.
My children’s needs are infinitely more important than someone’s perception of me. I don’t have to measure up to anyone else’s standards.
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I’ve been know to get a little “salty” with people when they’ve made a comment that I felt threatened my parenting skills. And you know what? They didn’t bother me again. If my oldest is holding her cell phone really close to her face so she can see it, I don’t think she looks weird. If my son is having a meltdown in aisle 12 at Walmart because he wanted the Cars fruit snacks, not the Scooby Doo ones, I don’t look around to see who’s appalled at his behavior.
I know too many people who invest so much time, effort, resources and worry into trying to make their lives appear a certain way. Like they’ve got it all together and that we should admire them for that feat. You know what that is? Being a fake! Because no one has it all together. I decided it’s a lot easier just being real. Most people prefer the genuine article. And if you don’t like the true me, then you’re the one who’s missing out.
5. I am his best advocate.
Well, and his doting daddy. I know my son better than any human on this planet. I can read an expression on his face and anticipate what’s coming next. I know his food aversions. I know he loves the silky tags on blankets and clothes. Because I have such intimate knowledge of him, I’m in the best position to jockey for him.
If the experts in his circle (therapists, special education guru, etc.) think he needs something specific to help him at school, I’m on the phone with whomever I need to contact. With documentation ready to go, if necessary. I can politely tell strangers not to upset his apple cart. I can let family members know when they’re coming on too strong or he’s overstimulated and needs alone time. It took me months of research after we came home with his diagnosis to find any kind of resources in our tiny rural area, but I was like a bloodhound set loose on a fresh trail. I didn’t stop until he had all of his therapists working for him.
6. I cannot be an island.
Even though I have a pretty good measure of intrinsic motivation, and I’m independent to a fault, I still need support from time to time. I need my husband to be involved, and he is. I need extended family to help out, and they do when they’re available (they don’t live in the same town as we do). I need my friends, mostly to just prop me up when I’m drooping, and they do. I need my church “framily” (friends who are more like family) to lend support, encouragement, prayer, and sometimes a hand, and they’re happy to oblige.
I don’t know where I’d be without all of these people, and I’m too scared to ponder it. I’m just grateful for them to my core. I know that I cannot do this alone. I wouldn’t even think of trying.
7. We must celebrate e-vuh-ree-thing.
Parents of special needs kids who have a positive outlook on their situation have the corner on this concept. It’s easy to get busy with the day’s long “to do” list and not notice that the sun is shining or your favorite song is playing on the radio or every light you drove through was green at just the right time. I know; I’m guilty of it too. But my son has taught me to cherish even the small things. Maybe especially the small things.
My son has taught me to cherish even the small things. Maybe especially the small things.
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When he tells me exactly what it is that he wants, I’m happy to respond. When he puts his own shoes on, I clap and cheer (literally). When he drops a toy and doesn’t go into “meltdown mode” but instead calmly picks it up, I congratulate him. When his teacher tells me that he sat on the big rug with his classmates during a large group activity (instead of sitting in his cube chair in an attempt to keep him focused), I beam from ear to ear. When he sat at the table and ate with us, I choked back tears of joy.
Parents of his “typically developing” peers might not understand my pride because what their children are able to do is expected of them, but when my son does it, it’s an important milestone. And I’ll celebrate every single one of them, every single time.
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If you have a special needs child, or know someone who does, I hope you can relate to the lessons I’ve shared here, and I hope this has encouraged you to reflect on your own journey. Even if you don’t have a special needs child in your life, I hope that when you come across a parent who is obviously struggling with their child, you will give them some grace and know they are doing the best they can.
We all face challenges of many kinds. If we can look beyond the immediate struggles and see them as opportunities for growth, joy, and blessings, we’ll become stronger and better equipped to appreciate all people—especially ones with special needs who have so much to teach us.
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Photo: Flickr/Travis Swan
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What I have just read is exactly the same way my life is with my son Keith.
Steve