What It’s Like

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Early on in Chase’s diagnosis I came upon this book called “Chicken Soup for the Soul: Raising a Child on the Spectrum.” I used to love the “Chicken Soup” series when I was in middle and high school, but had no idea they had expanded them to so many different versions now. This excerpt is from the first chapter, but I thought it was spot on and explains a lot about what it’s like, day to day, especially early on in a diagnosis (of any kind, I assume), to live and deal with the struggles and triumphs of raising Chase or any child on the spectrum…

1. In the beginning its like death. No matter how much you plan to give your children the freedom to achieve their dreams, naturally you have a few dreams of your own for them. You dream of birthdays and holidays, Santa and presents, going to Disney World, playing board games, Boy Scouts, sleep overs, team sports, high school graduation, getting married and watching them have children of their own to love. And though many kids with Autism will grow up and do just those things, more than half of them won’t. So you mourn for what might not be. You mourn for what you and they are missing out on now. And later, you may mourn for what will never be.

2. Despite the death of the dream child you envisioned, you are deeply in love with the child you have. He still does adorable things that you want to share with others. He loves you too, but the rest of the world won’t always get to see it. Because when he’s away from home, he’s not himself, he’t out of his element and comfort zone. He’s not the happy affectionate child who holds your hand, snuggles and gazes at you adoringly while pulling your hand back to rub his arm or leg. The world won’t get to see him at his most charming and you will see pity in people’s faces. They won’t ever understand the very real, profound joy this child brings into your life every day. Part of being a parent is pride in your children. People won’t always see what you are so proud of and that can be a lonely feeling.

3.  Guilt assails you from all directions. You want to throw a beautiful birthday party for your son, but he may not notice. He may not be the least bit interested in the presents, and you fear disappointing the guests. He may struggle to get out of your arms during the party, and you may see sadness beneath friends’ and family’s smiles. So you consider not having a party. You consider not taking him to others’ parties. You want more than anything to give your child the experiences typical children have and feel guilty when you don’t. But sometimes it’s simply too overwhelming for you to try. Therapists want you to spend hours doing activities to help him, but you also have a job and another child who needs you, and you need some down time on occasion to keep from going insane. So it seems as if you can’t ever do enough for him. The guilt is a killer.

4. You live in a constant state of uncertainty about the future. Yes, of course none of us knows our future.  But, if you have a typical child, you can be reasonably confident that he will have friends, self-sufficiency, and love. You know who to leave things to when you die. But if you have a child with autism, you don’t know how to play your estate. Do you set up a special needs trust? Do you leave it all now to the one typical child who can use it? Because lifetime care for your autistic child will just drain it. And what if he grows to do well and is able to care for himself? Because you can’t yet guess what will be, every option seems wrong. Uncertainty can affect every part of your life. Should you settle down where you are or should you relocate to a city with more intensive care for his needs? Will he ever talk? Will be ever be potty trained? You just won’t know until it happens or it doesn’t. And you live with fear that one day your then-elderly, vulnerable child will lie sick or dying without comfort of someone who truly loves him. Anxiety runneth over….

5.  Spontaneity is a thing of the past. You can’t just get up and go. You have to determine whether there is an escape route from any new activity or location. You have to pack things to distract him if he becomes upset. You have to determine if foods he will eat will be present or if you will need to pack his meal. If he isn’t potty trained, you will worry about where you can change his diaper that will afford you both some dignity. Everything must be planned and considered before leaving the comfort zone he is used to.

6. You begin to grow thicker skin because people stare. They stare in disgust, thinking he is simply badly behaved. They stare because they are curious. They stare in horror or pity – something about him is “different”. People stare…and the thing that will come back to haunt you are the memories of when you, also, made a judgement about another person in public. Righteous indignation mixes with humility and all you want to do is get out of wherever you are as quickly as possible. But you can’t escape every day life.

7. You grow weary of everyone else’s opinion. Because there are so many of them. There are those who are certain they know how “this” happened. There are those who are certain they know how to “fix” him. There are those who don’t think you do enough. There are those who believe you to be a saint. There are those who believe your child’s very visible difficulties allow them to have an opinion over your finances, his education, your marriage, and even your decision to bear another child or not. Opinions abound, but your patience may not.

8. But mostly, having a child with autism, is LOVE. A love that you, if you are a parent, can probably imagine. And a love that you can’t imagine if you don’t have child born with a bulls-eye in a big, bad world. Unconditional doesn’t begin to cover it. Limitless. Earth-moving. Making you question everything you know to be true about God and man. And that kind of love will haunt you ever moment of every day. You can see it just behind the eyes of every special needs parent on the planet. We are filled with a love we never could have predicted. We are filled with fears we never could have imagined. We are, quite simply, at capacity most every day. And, yet, when inevitably called for, we find that capacity expands. We aren’t better parents than those of typical kids. We aren’t saints. And our children aren’t lucky to have us. We are lucky to have them. Because, despite all the very challenging aspects of having a child with autism, none of us will walk away from this life without having grown – merely from having loved them. Having become more than we thought we could be.

**This was originally posted on 6/1/14, about 6 months after Chase’s diagnosis of Autism. While there are definitely days where these feelings creep up, still, I find comfort and hope in God’s words today…

“I will instruct and teach you in the way you should go; I will counsel you and watch over you.” Psalm 32:8. “6 Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. 7 And the peace of God, which transcends understanding, will guard your hearts and your minds in Christ Jesus.” Phillipians 4:6-7.

“The secret things belong to the Lord, our God, but the things revealed belong to us and our children forever, that we may follow all the words of this law.” Deuteronomy 29:29. “Future things are secret things. When you try to figure out the future, you are grasping at things that are mine. This, like all forms of worry, are an act of rebellion; doubting My promises to care for you.” Jesus Calling.

See, early on in Chase’s diagnosis, while I prayed to God daily, often, I still wanted control over the situation, the diagnosis, the future. Fear and anxiety controlled my every day life. It’s a daily challenge to turn these thoughts of worry over to God, but when I choose to “let go and let God” the weight of worry and fear are lifted and life is so much sweeter. While I still have days, occasionally, where the “grief” and “woe is me” gets the better of me, they are fewer and far between now that I have realized and really come to understand that ultimately God is in control. And while I can try my hardest, His plan for Chase is already laid out. I strive to “lean in” and let God guide our journey today, rather than letting the fear of the future be our guiding compass.

“23 Yet I am always with you; you hold me by my right hand. 24 You guide me with our counsel, and afterward you will take me into glory. 25 Whom have I in heaven, but you? And earth has nothing I desire besides you. 26 My flesh and my heart may fail, but God is the strength of my heart and my portion forever.” Psalm 73: 23-26

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