As a special needs parent, I often struggle with the difference between adjusting and lowering my expectations.
This is forefront in my mind now that T, a kid with great potential and a prognosis of at-risk FASD, is in Grade 1.
School learning is now more formal and less play based. Expectations have gone up and with it, so have the daily struggles and stress.
Last week, we spoke with his teacher about developing his Individualized Education Plan (IEP) for this school year.
One thing she said struck me immediately: her goal is for T to complete 25% of the Grade 1 curriculum.
I’m an honest and heart-on-my-sleeve person so I immediately voiced my concern and asked if this would mean we start to widen the gaps between T and other kids. How would he ever catch up?
I explained that while the hubby and I recognize T’s prognosis, we hope that disclosing it would not mean teachers use it as a reason to dismiss T’s potential to learn and grow.
His teacher reassured us that she has worked with many children with special needs and explained the purpose of setting IEP goals is to ensure T can feasibly meet these goals and to scaffold his learning.
If T is able to meet these mutually-agreed upon goals, she will continually adjust and increase them throughout the year.
She reassured us that, if anything, she will try even harder with T.
I believed her, as I have a good feeling about his teacher this year.
“I must be taken as I have been made. The success is not mine, the failure is not mine, but the two together make me.”
– Charles Dickens, Great Expectations
But I did ruminate about this for a few days after and felt that familiar sense of grief: when the reality of your dreams for your child clashes against the challenging reality.
I’ve written many times that T is a bright, caring, funny, determined and strong-willed child. I still believe in this wholeheartedly.
But I can also see that his academic journey is going to be challenging. There is no doubt the next few years will be very trying.
I have a love-hate relationship with the term “special needs.” I hate the stigma that is attached with this label and find that it can be damaging when it is applied by people who don’t have a full understanding nor are equipped with the tools to support an individual with additional needs.
My biggest worry is that people will limit, dismiss and not try as hard with T, because they will think about why they should even bother or they lose their patience with his exhibited behaviour.
But I also recognize that in order to build empathy and understanding – and to also advocate for and to receive the resource supports for T, we need to engage in open and respectful dialogue about his needs.
“I have been bent and broken, but – I hope – into a better shape.”
– Charles Dickens, Great Expectations
We have been very fortunate so far to have met understanding and empathetic professionals in the school and daycare system. We know it won’t always be like this.
For myself, the mental hurdle I always have to leap over is recognizing that adjusting my expectations – such as breaking down T’s learning goals into bite-size feasible pieces in order to build his long-term confidence and success – is not the same as lowering my expectations for him.
If anything, the hubby and I have higher expectations for T, because of the additional effort he requires from us on a daily basis.
I have to remind myself that T is on his own journey and the yardstick we measure him up against is himself and not other kids.
Most days, this is an easy mental model to follow. On some days, especially the frustrating ones, it is tempting to lose sight of the target and to start drawing comparisons with other kids.
It’s a good thing T is an easy kid to love and reminds us through his magical moments of pure endearment to always keep our eyes on the prize.
Beautifully written. It is difficult to navigate our expectations. I wrestle with this too.
Thanks for commenting. It certainly is so challenging.
Your comment is very timely and allowed me to revisit this post. We are struggling immensely right now with the return to virtual schooling this week and brings up a lot of the feelings – good and bad – I have around expectations and my son.
Hope you are doing ok on your end!
We are doing ok. Grace and peace to you in the virtual schooling.
Wow this post really hit home. May I ask, does T come home with homework? My grandson never does and I think it’s because of the IEP. Although it makes it easier for my busy daughter right now, I can’t help but think homework would help too. I am so happy you won’t just except what they tell you but push for more. T will never realize how lucky he is to have you two!
Thank you, Diane! His teacher is fairly pragmatic. All grade 1s are expected to do about 10 minutes of homework a night so ours is very simple: read a book a day. But it’s very challenging because of his difficulty with focus so if ends up being a battle on most nights. But it’s getting better and we keep pushing.
I can understand the no homework philosophy though and I can see both sides of the perspective. Although you can guess which side I lean towards. 😊
Hope your grandson is having a great school year!
beautiful!!! and loved the perfect quotes!
Thank you, Vickie! I know you can relate with your own experience as well. 🙏💕
There’s never a one size fits all solution, but it’s all about trying to set people up for success. With T that may mean having a lower benchmark, like completing 25% of the Grade 1 curriculum, but that may be part of the strategy to build up his confidence to achieve an even higher benchmark. I get what you mean about worrying about people writing T off or limiting his abilities. The reality is that there’s always going to be jerks that do that anyway. But it sounds like he has an amazing support system with you and the hubby in his corner, which is so important. His teacher also sounds very supportive and will hopefully go the extra mile.
Thanks Linda. I think that was what the teacher was trying to get. Start and build a solid base for him, which means going at a slower pace and then build him up.
I do agree there will be the inevitable jerks that’ll show up in our journey, whether at school or when T is a grown up in the world of work. Just thankful and counting our blessings now while we have the good ones so far. 🤞🏻🙏
Thank you for sharing your story and that of T. I can feel every concern , worry, hope and dreams that you have as a Parent. The real world is not easy. We will meet people and professionals that truly, genuinely understands and will do everything to help but we will also meet those that are less caring and understanding, even selfish. We can only keep trying and supporting our kid’s with unconditional love , no matter challenging to hopefully prepare them for the real world out there. I’m also concerned with my son. He is a kindhearted soul, full of life and dreams. He is like me during that age, full of trust , optimism, hungry to make all happy and create the best world for all possible. But he will encounter people and circumstances and that may slowly break him. People can cause the worst nightmares and trauma, may he never encounter those. I’m trying to make his future way better and kinder than mine. May our children be ready to handle anything when real adult challenging situations start to happen in the future. Stay strong my friend. You are a light in this world. 🙏
Thank you for always leaving a kind comment. They really do make a difference in my day. 😊
I think we both agree that children have a wonderful and pure innocence we want to hang onto and that teenagers, like your son, are filled with unbridled optimism and dreams that we also want to hang onto. We want to help our kids avoid the heartache and adversities that we encountered ourselves.
From what I can tell through the stories that you’ve shared, I think your son is in good hands and has the tools and life experiences to navigate the good and the turbulent waters ahead. And you’ll always be closeby when he struggles!
It’s rainy and gross over here this weekend. Hope you are having a dryer and sunnier one! 😊😆
Thanks Ab. Rainy here too and just drove my Son to school few minutes ago. Yes, I hope he does have the tools to go through life when he reached young adulthood. His planet and world will be harder than ours. They need all the survival tools body, mind, heart. But in all, I always remind, “Just be happy in all that you do because no money can buy that.”
That is a wonderful reminder and lesson to share with your son… and with ourselves, really. Hope he is having a great school year!
Yes, is. Thanks 🙏
I love this post, the quotes and especially the amazing commitment that you have to support T to his fullest potential! The balance between setting expectations that are achievable and yet making sure we are challenging our little ones is a continual struggle.
But it’s your overall feeling about special needs and expectations that touches me the most deeply. It reminds me of a quote I’ve thought of a lot in my parenting journey. “God breaks the heart again and again and again until it stays open.” – Hazrat Inayat Khan I so often place my own expectations for how I want life to flow for my kids (and often that includes wishing them not to have any difficulty or adversity) that my expectations are broken again and again until I remember just to stand by and witness. Until the next time…and then I have to learn again!
I love your “magical moments of pure endearment”!! Sending my best wishes for lots of those – Wynne
Thank you, Wynne. Being T’s parent has definitely strengthened (and challenged) my faith. There’s a story I’m keeping close to my heart (and for T to learn one day) that makes me truly believe we were brought together by a higher power and that it was no coincidence we were chosen as his parents.
I agree with you that taking care of a child with additional needs will mean having your heart broken again and again but like you, I rather live with an open heart than one that has closed itself off to the world.
Take good care and hope your two little ones have a great weekend!
What a beautiful comment, Ab! I got a shiver when you mentioned your belief that you were brought together for a reason! Love this!! I hope you all have a great weekend!
Oh Ab, while I don’t know what it’s like caring for a child with special needs, I am very familiar with the school system and IEP. While my grandson has not been diagnosed with anything, his behavior at one point was a bit challenging for teachers. We haven’t had one issue since enrolling him in an academy for higher learning. Due to my previous experience working for school districts, I sat in on a few of those IEP meetings w/ my daughter and she was feeling and thinking the same as you described (seeming causing a gap between a student with “different” (not special) needs and all the other kids). While teachers mean well & I admire those who do their jobs with passion and go the extra mile, YOU and your husband are the advocates for T. My apologies, but I guess what I’m trying to say is follow your gut and if somethings doesn’t seem right dig deeper. No one really knows T like his parents do. This subject is very important to me and the thing is, my grandson was bored in class, a bit more advance, he wanted more responsibility and he’s good at reading people and their body language recognizing when the teachers were BSing him basically. Blessings to you all!
Thank you for sharing your story and insight, Tammy. It really is such a strange and surreal process to go through to be honest. School always came so easily for me so to try to see and experience it through my son’s eyes is an entirely new challenge.
I agree with you about following your gut. I have a good feeling about his teacher this year but will definitely not be shy about speaking up if I feel something is fishy.
That is great that your grandson was able to get into an academy for higher learning. Way to go to you and to your daughter for being great advocates for him. In turn, I have no doubts those values will grow within him as well! 🙏🙏🙏
As always, I’m rooting for the three of you. I feel like you’ve all become family.
Thank you, Tammy. 🙏💕
Thank you for sharing this post and your insight. I am currently in classes to learn how to teach special needs preschool students, so the topic of IFSPs and IEPs is on my mind. I agree the label “special needs” can either cause stigma or open the doorway to more resources. Like you said, ultimately it’s about measuring kids against their own unique progress, not comparing them against their peers. It sounds like T has great advocates in his school, and amazing parents. 🙂 I hope he has an awesome 1st grade experience!
Thanks very much, Lizi, for visiting and sharing your comment. Best wishes with your continued studies. It is such important and life-enhancing work that you are entering into and I wish you all the best with it!
Thank you, I appreciate your kind words, and I’m really happy I found your blog!!