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Finding My Way. Or, At least Attempting...

By: Helen Morrison

Coming to terms with a diagnosis that can never be cured is a complicated process. There are multiple ways to look at the situation and it can be hard to find the one that works best.

There are some people that believe in seeing their child as who they are, and not as their diagnosis. Others find solace in highlighting the differences and celebrating them. Some join as many support groups as possible and immerse themselves in their new-found community, while others are content in being private.

A year into this life-changing news, I am still figuring out which ideologies make me feel the most comforted.

There's no denying that Avery is so much more than his diagnosis. All who know Avery (and this is a fairly large village as Jeremy and I do not lack in the “awesome friends” department) were blessed to have known him for 12 months before we had to add an additional label to who he is.

Avery is social, loves music, thrives off of making people laugh, adores reading books, and also happens to have Down Syndrome. I put Down syndrome at the very end of the list for good reason…because he is so much more than his medical label of health.

However, it is difficult for me to totally dismiss this label. At times I feel like to do that would put expectations on him that are unfair. But then this question arises, “Isn't it good for us to expect things out of him that any typical kid would achieve?”

This is where expectations and labels become confusing. I want to have high hopes for all of the things he will accomplish, but at the same time I do not want him to be put in environments where his delays will be glaringly obvious.

I can only imagine as he gets older this dichotomy of what Avery wants or needs versus what makes my husband and I "comfortable" will not only change but grow ever so difficult to navigate.

In my natural way of coping, I want to know now what lies ahead of us, and I want to pick which "way" will work best. I am not a "middle of the road" kind of person when it comes to difficult situations. I find comfort in having a strategy, or at least what I can play off as a strategy, until the next move needs to be made.

Unfortunately for me, I am learning there is no single right way to do this. One can’t rely on a strategy because the circumstances are always changing as your child grows.

For example, Avery just began Head Start and was placed in a group with infants and toddlers. Typically, once the child is about four months from their 3rd birthday they begin the slow transition into their new Preschool class.

I feel my own anxiety building about this transition - just like I did when his first birthday was approaching.

The voice inside of my head is silently speaking to the universe; asking it to slow time down again so that my son can catch up to his age and transition smoothly into Preschool.

I want the universe to slow down and allow him to start walking, learn to request things, and master the skill of self-feeding. I am already asking his team of therapists what happens if when that time arrives he isn't ready? Will he be allowed to stay with the younger kids and also attend developmental preschool?

Of course, I already know they tell me that he can change a lot in that time and that we will discuss where he needs to be when that time comes. I hate that answer. That answer doesn't allow me to be strategic or start coping with how that would feel now, so that I'm ahead of the game.

Silly, I know.

Here's where the dichotomy lies. On the one hand, I want my son to be around his peers so that he can watch and learn from them.

However, if he were only around typically developing children his delays and shortcomings would stick out like a sore thumb and it is possible the other kids may not be accepting, or he could become discouraged. If we have him stay behind with younger kids who are closer to his current level, that could also hinder his development by not allowing him the opportunity to try more challenging activities or behaviors.

I ache to know exactly what will be best for Avery as he grows older. I am also trying to find the path in which I can walk to come to terms with the fact that he has a disability.

I am struggling to find a happy medium.

Deep down I think I know that we’ll both be learning from each other as we go, but right now being stuck in the middle of my emotions is hard for me. I feel very vulnerable knowing I can’t make any decisions until the time arrives to do so.

It’s such a scary feeling knowing that planning ahead is nearly impossible!

Maybe one doesn't ever truly come to terms with a diagnosis like this? Obviously, my current fear of the unknown is getting the best of me.

I am feeling the need to rush through all of this while ironically I'm praying for the time to slow down for Avery.

One thing is for sure; if I don't begin to slow down and put one foot in front of the other, eventually I am going to trip over my own feet.

Read more by Helen Morrison by clicking HERE

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  • Im not sure why all those ? marks came up. ☺

    Sonia on

  • I agree with Karla?…I’ve been a special day class professional for many years ( first and only job ever). I LOVE my kids (students), i LOVE being there everyday. This past January, I’ve been given the HONOR of being a mom to a son with Down syndrome♡. Alot of family and friends tell me that im lucky that i have insight from both sides of the table. To me that is bitter sweet because it could be in my favor or completly make me into a monster mom!! LOL?..I took the diagnosis well, i cried, no doubt about that, then i moved forward. I feel that if we, the parents or caregivers, sit there drowning in sorrow everyday, then we are failing our children. Then we are teaching a handful or more, of negative behaviors, habits, and self esteem. Im not saying lets be a robot, unemotional or detatched. Im saying that how can we GUIDE, LEAD AND LEARN TOGETHER with our children if we dont stimulate, motivate, kick start their brains?!! How do you know if your child CAN NOT do the same task as his peers when he hasnt tried it yet? He/she might just impress you? If he/she isnt quite completing the task as the others are in his class, just remember that WE ALL learn at our own pace. Or he’s not motivated. Do as much as you can at home as he is doing at school. The more exposure, the more he/she will remember it… Also, as for my son, i like to believe that instead of US teaching him so many things, HE WILL BE THE ONE TEACHING US??…. It DOES take a village to raise a child. ☺

    Sonia on

  • Thank you!!! Slow time down, so beautifully said!! Waking each day to see what the day brings us certainly something new for me!! While every day I feel blessed for having my beautiful, funny, smart and adorable 2 1/2 year old Joshua, some days what lies ahead can be scary and challenging. I am so torn between wrapping him up in my loving arms for protection and letting go to explore his full potential. It’s a balancing act for me I guess, not Josh. We are at a point in his development where the differences seem to be broadening, so your comment of slowing down time is so beautiful and relevant. Everything that Josh is and does is our blessing and him being happy, wearing that amazing infectious smile is my primary focus!! It’s hard but I try just to keep in the day!!!!

    Donna Steet on

  • As the mom of a 26 year old daughter with Down syndrome here’s what I would say to you. Do both. Our daughter attended regular preschool 3 days a week and preschool for children with development delays 2 days a week where she got extra help from therapists. And as for the future? Plan for your son to be as independent as possible and use that as the guide for all the decisions you make now. Let him do as much as he can for himself (pick out clothes from 2 options) working to the point where he does laundry, cooks basic dishes (cheese sandwich and grapes counts). Our daughter lives in her own apartment with supports and there are sure bumps with that arrangement but that living arrangement is her choice so I do all I can to make that happen (and worry about what is best) all the time.

    Karla on

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