“Okay Michele, we have a room on the 5th floor, so we can all get into the elevator now. Our room is ready.” My husband John says these words. They are heard by our children who fly to the elevator, all excited to start our vacation.
What I hear is ELEVATOR!!!! 5TH FLOOR!!!!
What I feel is ANXIETY!!!!!
So I immediately try to find a way out of going on a packed elevator. Maybe I can walk the steps up … No, not a good idea, especially with suitcases. Maybe I can sort of sit with the extra suitcases and then walk up once they are all out of the lobby … but soon there are no excuses and I find myself IN the elevator and truly feeling the anxiety and saying nothing to anyone.
Let’s face it: we all have that certain something that creates anxiety, that makes us wish we were somewhere else. But what about those who have that type of anxiety all the time? The ones who have that anxiety over a good portion of the day for reasons that to us may seem small but to them are huge.
Our daughter Elizabeth, as many know, has Sensory Processing Disorder or SPD. So she feels this anxiety. Not everyday. Not all the time. But the anxiety is there in waiting and can show itself at any moment.
But how do we deal with it?
How do we make gains in life with it?
How do we create a life with and for Elizabeth? Here is what I learned.
If you read the last line in my scenario above, you see the words “and saying nothing to anyone.” Initially, this is how I chose to deal with some of the challenges of Elizabeth’s sensory issues.
I covered up for her.
I took her out of places quickly.
I avoided places with her.
But what I did NOT do was talk about her disorder. I did not tell those around her why she was crying or having a meltdown. I could have turned to those who cared about us, but instead I turned away from them to hide, and that is not a good thing. It is very lonely, isolating and sad.
1. The first thing I would suggest is to TALK. To those around you, friends, family. Let them know what is going on and they will be able to help you and support you. It feels so much better to reach out than being alone.
Something I know now and did not know then, was just how the SPD would affect Elizabeth. It affects every child differently, so knowing what makes your child anxious/afraid or knowing what stimuli your child needs to remain calm is vital to life with your child. With this information you can mentally analyze a situation for potential anxiety triggers, things that might cause a meltdown such a sounds, lights or even smells. Or plan sensory breaks to offer your child the stimulus they need at that moment. Or just having a back-up plan for when things just do not go as planned. Knowing how your child works will help others learn as well.
2. The second thing I would recommend is READ:
Articles on SPD
Personal stories from other families
Books on sensory issues
Even Facebook groups for families of children with SPD.
Being armed with knowledge helps more than you can know.
We are all made differently. We all have different likes and dislikes, talents and skills, but something that we all share is the desire to be accepted. Be it by those in your peer group, those at a workplace, those in your family or just by society in general. Being a child with SPD can set you apart from most people. Being a family member of a child with SPD can also be a challenge. But you can help this.
3. I know from personal experience that Elizabeth was the only child I saw last Sunday who froze at the door to Office Depot. She cannot enter that store without sweating and almost shaking as it is too bright and too vast for her SPD.
Were we set apart from others? Yes. But the thing is, we already knew that she probably would not enter (we still try) so we had a Plan B. In other words we accept this part of Elizabeth as being just that … part of Elizabeth. So we were ready and able to help her. The SPD is one part of the puzzle that makes up a pretty amazing girl. Do we like it? No, not really. But do we accept it and her? Absolutely! And I know that having her know this makes all the difference. She knows we will love her and support her no matter what. Kind of nice, huh?
So I offer out ACCEPT as the third piece of advice.
Accept your child for who they are because they have so many more parts and pieces to them other than being affected by SPD.
Trust me, we are 18+ years in on our journey, so the advice I am giving is road tested. It does not mean it is easy, as it is not. But I will say it is worth it.
4. And lastly … LOVE
Love them for the strength they show each day, through feelings and emotions that could fell the strongest of people. And tell them about this love. Reassure them when they stumble and praise the heck out of them when they succeed. Hug them when they allow and don’t when they can’t handle it. But let them know, as we have each day of Elizabeth’s life, that they are a gift. And that your love will never change.
I wish you all peace in the month of April.
Michele writes for TalkTools Blog every month about her experience caring for Elizabeth, her daughter with Sensory Processing Disorder and Dyspraxia. Follow her story since the beginning here.
What a beautiful article. I so appreciate you sharing your awesome, personal and as you said ‘road tested’ suggestions. Your words make such a difference to other parents and therapists, teachers, etc. You have a heart of gold. Elizabeth is blessed to have you as her mother and vice versa; she as your daughter. It is evident that you’ve learned much from each other. God bless!