Without a Crystal Ball

Our Journey through Chronic Illness

Parenting is hard work. It’s a job that is messy, dirty, fun, exhausting, and amazing. It is truly hard to identify all the amazing emotions most of us experience as parents.  When our children come in to the world, it feels as though nothing could ever be impossible for them. Life starts to take off and we begin to expect things from our children. It isn’t even big things we expect. Most parents expect that their infant will raise their head, roll over, start to crawl, babble, walk, talk, and explore the world. My expectations were no different going in to parenting. Each visit to the doctor I got the sheets that told me “What to Expect” at the present age my son was at. Most appointments I would scan the sheet and my heart would sink because he wasn’t doing most of the items on the list. My son was born with a part of his brain missing – the pituitary gland – and it had caused a very significant illness at 3 months old. The crisis was so dire it has impacted his life ever since. Nothing has developed normally since, and there are no charts or graphs that match his capabilities.

In the early days it was really hard. I would find myself online researching every single ailment that could be impacting my son. Doctors felt stumped because his delays were not consistent with a brain injury, but he did have global motor processing delays. It effected every single aspect of his development. He was late to hold his head up, crawl, walk, talk, jump, run, and it’s made him unable to effectively eat. Motor processing is everything you do with your limbs and body. It could be as simple as burping, and my son cannot burp. It is truly amazing what we take for granted as humans. We put our feet on the floor and expect them to move, but people with motor processing delays every single movement is a challenge. Their brains have to be trained and retrained to do most every single motor skill. This has been the case with my son. He still hasn’t mastered the ability to burp, he still can’t effectively use his tongue or chew, and he has trouble swallowing anything thick.  All of these are motor processing delays, and all of this has changed my expectations about parenting.

Initially, doctors hoped it would be a bump in the road. They hoped he would just catch up developmentally and become like most children. The therapy goals in the beginning were for catch up – with very little objective on actually helping him learn and retrain his brain. We spent over a year in therapy and nothing worked. He wasn’t talking, could barely eat, and his locomotive movement was over 18 months behind. We entered private therapy, and it was there we got slapped with a very harsh reality by seasoned professionals. He wasn’t going to grow out of this, therapy wasn’t going to be about catching up, and he would have to work really hard for years. Therapy is on-going because any time off from therapy causes regression in nearly every area. His speech has exploded, but it’s hardly intelligible to strangers. He works hard in physical and occupational therapy to work on mastering skills like walking up and down stairs, dressing himself, putting on his shoes, and brushing his teeth. He still needs a lot of assistance in most of those areas, and the coordination it takes to do these skills is really hard for him.

The therapists were very clear with me this past spring. We had our 1 year anniversary in private therapy, and he has made a ton of progress. However, they reminded me that everything he does is so much harder for him. He can’t do most things spontaneously, and these issues are not going to go away. The truth was pretty heartbreaking to me. I had to finally accept that no amount of therapy was going to “fix” him. Expectations are hard to change because they are so ingrained within us. Most of us don’t even have to think about our kid meeting milestones. Most parents don’t have to worry about feeding issues in an almost 4 year old. I had to change all of my expectations.

As soon as my expectations changed about what society wanted him to be, what books wanted him to be, and what doctors hoped he would be, I was able to have a lot more freedom as a mother. I put my foot down with doctors and therapists about feeding. Feeding therapy was going no where. Doctors were resistant to a feeding tube because they didn’t want him to regress. I assured all of them that regression was the least of our worries if he wasn’t growing. We had a feeding tube placed. It was a hard choice. However, following my gut was the best choice. He’s growing, learning and more alert than he was when we were fighting to feed him. I have let go of the expectation that he should eat. Eating is really hard for him, and if I as his parent can alleviate that difficulty, I am going to help him.

When we go out with him, I don’t have the same freedom as many parents. My husband or I have to be with him at all times. He chokes and often loses his breath from his inability to burp. We have to be there to help alleviate that by venting him via his tube. Again, I have let go of my expectation that he will burp on his own. The freedom of letting go has been tremendous for me. I realize over time there will be more and more I need to let go of in his development. I know he is smart, but it’s very clear to me school is going to be very hard for him. I am not going to expect him to be an honor roll student. I’m just going to expect him to learn and try every day. The freedom of letting go of my expectations has given him freedom to be himself. He is uniquely a little boy that is happy, silly, and full of love. His brain may be wired differently, but he will exceed all of my expectations because I have none. I am giving him the freedom to dictate what he can do, and anything he accomplishes I will cheer on.

My hope is that more parents – even those of children that are neuro-typical – can use my experience to let go of their own expectations. No matter what we do as parents we cannot force our children in to a box of what we want them to be. They are the ones that control their own destiny. We as parents just need to be their cheerleaders and provide them the tools and opportunities to be successful. Success doesn’t have to be what you want it to be – it will be what they want it to be. In that there is much freedom.Quote for Blog

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2 thoughts on “Letting Go of Expectations as a Parent of a Child with Special Needs

  1. bethany Kays says:

    It makes me wish there were no “standards’ or checklists or milestones. It is like a slap in the face. It makes parents worry. It makes parents NOT listen with their gut like you did. It totally stops intuition and that is our best way to advocate for what is best for our child! loved this post.

    Liked by 1 person

    1. I couldn’t agree with you more! Thanks for reading and commenting!

      Liked by 1 person

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