Special Needs’ Parenting: Don’t let guilt steal your joy

….”I pushed for more until my son finally pushed back.”

Over the years, I have often wondered if other parents who have a child with a disability constantly battle guilt like I do.  I find that when it comes to setting expectations for my son, it subsequently leads to questioning myself with: “just how much is enough… or too little?”  We all know too well how tough it is to balance everything in life between work, countless doctor appointments, therapies, IEP meetings, prescriptions, surgeries & hospitalizations (whether planned or completely unexpected)…..and these are all just for your child.

Consistent parenting is difficult enough, so add on the title of “special needs’ parenting,” and you’ve got yourself a whole different ballgame, which can be quite a balancing act.  On top of our own internal struggles, both parents have to constantly try to find a compromise for goal setting for our child……one parent pushes too hard in certain situations while the other seems lenient, and vice versa as they change.   Where’s the balance?   Am I a bad parent for expecting too much, or for not expecting enough?  My brain tells me one thing:  we need to push so that they meet their fullest potential, even when it’s hard.  The responsibility is on our shoulders.  Or, my heart tells me I am asking too much, and I don’t want to push him to a breaking point where he is miserable.   Guilt can be consuming.

I decided to ask some experts, two other parents who have a child with special needs….needs that have no connection nor correlation other than the label – special needs.  The following are the questions with their candid answers:

Do you ever have an internal struggle of guilt for either “pushing too much, or not pushing enough” when it comes to your child and their progress?  Or both?

 #1  “I struggle with both a lot too!  With us it’s going to be therapy related things. Brittney has one therapy every day after school now, and of course she has in-school therapy too. She really doesn’t enjoy PT or OT. She doesn’t like to be “told” what to do. She doesn’t want to try to sit, or get on her tummy. She doesn’t want to hold her head up by herself. Often the therapy sessions end with fussing, if not tears. And then I try to practice with her too – sometimes – with the same results. Then I wonder, should I really be making her uncomfortable and unhappy? Is she really making any progress, and if she is – is it even enough to make a real difference in her life? If it’s not improving her quality of life, why keep forcing it? Doesn’t she have enough against her without me adding to it?

And then there’s the summer and the weekends when I’m NOT making her practice. Hour after hour of her laying on the floor, listening to music or watching TV. . . In that case, I’m obviously NOT pushing her too much . . . and I wonder if I’m doing the right thing? What if I had a schedule, and made sure she practiced at least 3 – 30 minute sessions a day when she’s home all day? How much more would she progress? How much happier would she be in the long run if I just had been pushing harder ever since she was born?

So both scenarios = guilt for me.” 

———————————————————————————————

#2  “Finding the line between pushing too much or too little is a delicate balance. When Mason was younger, people would often say “You probably don’t discipline him do you?” or “I bet it’s difficult to get onto him.” or “Bless his heart, that’s just so hard for him.” From the beginning, we were determined to have high expectations and push him to be the very best version of himself as possible. Along this journey though, life continues to happen. In trying to balance family and work, I have experienced guilt many times. Am I doing enough? Spending enough time with him? Expecting him to be independent? Sometimes it’s just easier to do it for him. If he makes his own sandwich, it will take four times longer than if I do it. If he carries his laundry upstairs, he will probably drop some of it and it will have to be folded again. In these moments, I feel guilt for not pushing him harder toward independency. Academically, I have had the opposite form of guilt. Am I pushing him too hard? He’s plucking all of his eye lashes out. Is that because the work is too demanding? He’s on anxiety medication. If I expect less of him in school, would he need that medication? I have to stop and remind myself at times that this journey will not be perfect. My decisions may not always be right. What I do know is this…I love our son and I do my very best for him every day. Yes, at times, I need to stop, breathe and look around for perspective. I can’t live in guilt or fear though. If I give my best then that is enough.”

Last year when my son started high school, we knew this would be a challenging year.  He had been in all mainstreamed classes, under special education qualifications for Other Health Impairment (for Apert Syndrome and ADHD) and Learning Disability.  He had all the accommodations in place, etc., and then into the second six weeks he began complaining of how hard everything is, and that he “can’t do it.”  When I hear those words, my ‘go to’ fix it is to tackle it with relentless encouragement, accompanied with the phrase “yes you can….it’s hard but you have to try.”  His teenage rebuttal was, “you don’t understand, you’re not the one dealing with it, etc.”   In my defense, the fact that he was at the age of 15 loomed in my head…. I questioned myself daily, “Is this just an attitude because he is 15?  Is it just because this is the first year of high school, which is such a big adjustment?  Is it really time to make change of his placement in classes?  He is very smart, what if we make the wrong choice, all because he was being a little oppositional?”  By the end of the second six weeks, an unexpected medical event happened, and he had his first clonic-tonic seizure in the car after I had just picked him up from school at dismissal.  After a three-day stay at the hospital, a previous MRI showed scarring tissue on his brain from one of his numerous surgeries, so he started seizure medication.  Fast forward another six weeks, we learned that the medication he was put on caused him to have severe depression, which exacerbated the ‘present’ depression he was already expressing to us.  From the beginning of school I had pushed for more, but my son finally pushed back.  We ended up changing not only his seizure medication, but also a portion of his placement in school.  We had a meeting with the school and decided that the pace in his two core classes, Algebra and ELA, were just to fast paced for him to keep up, even with accommodations in place.  After my husband and I had long discussions and agreed that he needed more help, it was decided that he begin Resource classes for the two subjects.  I am happy to say that things improved drastically on both counts.

The weight of responsibility can feel like you’re in a circus act where the acrobats are trying to balance people on their shoulders, making a tall ladder of people, to show everyone how much they can do.  Each person that makes it higher is like the expectation, and the strong person on the bottom is the parent.  The parent encourages the child to climb higher and higher, but the child pushes back and doesn’t want to, yet, he does it anyway.  He climbs above each person, making it taller and taller until he is just plain fearful, and everything starts getting wobbly.  The weight of all the acrobats is simply too much now for the parent, and the child is just not ready for that height, yet.  At some point, the acrobats will tumble if there are too many added.

It’s easy to get wrapped up in trying to look ahead when thinking of your chid’s future.  Are we doing enough?  Getting enough therapies?  What if I miss something?  What will his/her life look like in 3 days, 3 months, or 3 years?  There’s nothing wrong with looking toward the big picture so that you can set in your mind what you want to see for your child in their life, a goal to work toward.

Yet…

Have you ever caught yourself brushing past “the little” things that your child accomplishes?  Afraid if you stop to celebrate them, you’re giving yourself permission to be okay with the small steps to life goals, or that perhaps the progress stops there?  Or better yet, accepting the fact that sometimes goals have to change.  Expectations can change from “currently working on”, to” this year,” to….”not yet,” or maybe, “not ever.”

Stepping back to re-evaluate can be a reprieve for the whole family sometimes.   When others may see it as coddling, try to see it as: I am bending, so that he does not break.  At some point, something’s gotta give.  When you make the choice of which battle to fight, and others think that you seem somewhat heartless because of setting such high expectations for your child despite their struggles, try to see it as: we are doing our very best to teach and raise them to be contributing citizens, we have that responsibility too.  

It can be a perfect juxtaposition if you think about it, so..

Stop.

Look at just how far they are willing to push themselves with your encouragement.  It’s a beautiful thing to see them persevere, isn’t it?  Now, turn the coin over.  My gosh, the love you see……….just look at what they have been through and achieved.  For medical complexity, look at what they have survived.  Look at the love they have shown you by their mere existence.  Look at what YOU’VE learned from THEM.

Don’t get me wrong…….pushing our children outside of their comfort zone is what we do as parents.  But, sometimes it’s okay to remind ourselves to stop and see the progress…(yes, it’s very cliche-ish, but so true).  It’s not being complacent, it’s giving yourself grace.  Grace to know that you are doing the best that you can.

Give yourself some grace mamma.  

Give yourself some grace Dad.

Give your child some grace too.  Remember where your child is coming from.  Don’t let anyone steal your joy as you witness them taking a small step toward mastery for the very first time, just in case you see a look of pity from the world.  What was once a dubious expectation that loomed in the back of your mind now becomes a big accomplishment.   No one knows how much your child has been through or what their daily struggles are better than you.  Baby steps for them are sometimes like marathons.

Don’t let self-blame or guilt steal your joy.

Rejoice always, pray without ceasing, give thanks in all circumstances; for this is the will of God in Christ Jesus for you.”  ~ 1 Thessalonians 5:16-18 (ESV).

I believe that we are the lucky ones by getting a peek of God’s unconditional love, so that we can share them with the world.

Celebrate those baby steps….if I completed a marathon, I know I certainly would!

God bless,

Lisa D. Brown

Author, Changing Faces – A Journey of Hope and Perseverance