Creating the Special Needs Standard in Our Mind

Currently, I am one of those moms now that weirdly asks things like “Oh, when are they supposed to eat again?” or “Oh wow he walks and he’s only 18 months?” The standards in my mind are so fuzzy – before I became a mom I had some general idea, but now that I’m a special needs mom I am even more confused.

Then, Paige gets developmentally graded. She’s put in a category based on what she’s behind in. The doctors take the average age for all milestones, and compare Paige to it. Then, they say “She is 6 months, adjusted”. You see it all the time in Facebook groups – “What is your child’s adjusted age?”

This bothers me greatly. I feel as though it causes too much heartache in the special needs world. The criteria that our children are compared to is constant – it’s never ending – and they can never attain to it. 

How do I describe my standards for Paige? How do I live in this world where it feels she will always be behind?

Establishing Your New Normal

When I go to appointments now, I have to prepare myself. Perhaps I’ve been so excited that week because Paige sat up – yet I have to be prepared for yes, a little joy and commendation, but followed by a “should” or “standard”. I remember when I could proudly say Paige had head control! I was so excited to tell the doctor. Yet, when she was compared she was labeled as “weak” head control, or an “infants” head control. In my mind, my little joy disappeared for a second – I had to reroute back to the joy. To see my girl where she is.

When I go to appointments now, specifically developmental, I try and go through the following facts in my head:

1. Look at where Paige IS -what has she accomplished in her lifetime, and take joy in that
2. Accept her true age. She is not 6 months adjusted. She is 2 years and 3 months. She is a 2 year old who can’t walk, talk, and sometimes even move. In my heart and soul, and in hers, she is her age. It would be unfair of me to put standards on her that she cannot come to – so, she’s a 2 year old, but a disabled one. 
3. Ask the doctors to not discuss adjustments and standards – just to focus on what she is doing, and go from there

When I stop thinking of where she should be, it helps me then accept where she is. Paige’s normal now, is sitting up by herself and noticing me when I walk by. That is a huge milestone! I can’t think of when she was supposed to do that, but just on when she did – and celebrate that. 

A Word about Medical Standards – from my Dr. Mom Perspective

Disclosure: I am not a medical professional and these words come from a mothers perspective

One of the reasons for standards is to establish what isn’t normal, and therefore treat it. But, when it comes to disabled individuals, we typically already know what isn’t normal. We have already accepted the fact that they may never do this or that. So treatment is simply looking at the next step, and moving towards it at the patients pace. For a special needs parent, sometimes every doctors appointment is a reminder – a trigger of grief -and it can take a toll on our mind and spirit. Wouldn’t it be amazing if we left in acceptance and joy after every appointment? What a world that would be!

If it were my choice, I would remove a lot of the standards in the medical world, for special needs children. There is no adjusted or percentile – there is only where the patient is, and what’s the next step. Whether it’s saying a word or sitting up, understanding the word “NO” or “YES” – that is where we are directed to. An appointment where she’s graded and compared can put a parent in a serious depression, and think they are not doing what they’re supposed to – when it’s no one’s fault. 

For the medical staff, I have no idea what procedures and protocols you must follow. I respect you greatly! But, if it’s in your power to limit the talk of adjustments, “should be’s” and standards in the room with the parents and child, I think that would make a difference in the mental health of patients and children. If you must compare, compare on your own in private with the team – and then show the parents a little step forward – knowing where the patient is at. 

The Importance of Acceptance

I personally think this is the difficult part for many parents. We want to have standards because then we feel like we can fix something – we’re not in limbo. If we think of an age being adjusted, then we can just do X amount of therapy and they’ll “catch up”. But, in reality, your child may never be able to reach that standard, as hard as it is for us. Going at their pace brings out the emotions, the anger, the grief. We just want our child to be normal – but we fail to appreciate that they are normal, for them.

Therapies, doctors, goals – they are all an amazing thing!! As long as we work with the child’s standard of normal, the special needs standard – and moving on to that small next step, in their world.