Tag Archives: dyspraxia

Special Needs Parents and Caregivers: What We Need

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The title says it all…we are the very product of the lives we have lived and are living with our special needs children….for example

While other families attended football games or birthday parties, we would dissect into the smallest bits, just exactly how that game or party could play out, so we could decide if our special needs child could handle it.

Instead of waking up and pondering what we need to do that day, and enjoying the morning with our children.  We would get up, praying our child would feel calm that day, their systems would allow them to go with us with no meltdowns.

My second daughter, Elizabeth now 23 years old, has two disorders that make our life full of the above mentioned scenarios, when she was younger each and everyday was filled with these situations and more. As such I became a different person than I was when I was the mom to our first  child, a typically developing girl.

Her disorders are SPD, sensory processing disorder and Global Dyspraxia

I can only speak from my experiences, but having encountered so many other parents whose children have so many other disorders, I think the core feelings might be the same.

The one memory that really was the moment I truly realized I was a special needs mother was when Elizabeth was two years old.  She was in her height of fear and anxiety.  Going anywhere with her was a huge challenge.  The tears, arching back, meltdown…..We had not begun our search for a diagnosis yet.

We were at the park, enjoying the day, Elizabeth was usually okay here for a bit while swinging (makes sense right?)  Emily was playing and having fun when my friend and her two children  happened to show up.  Out of the car comes my friend, her two children run out to my two and want to play… the sudden change in energy, talking, laughing made Elizabeth nervous…she begins to show signs of a meltdown.  

Emily wants to run and play with them but the park is big and I know that I need to go with her, but Elizabeth is looking pretty tough now.   My friend is saying ” Just take her out of the swing, and she’ll be fine”  Emily wants to play….Elizabeth wants to go….My friend could not possibly  truly understand……I am ALONE with this…..  that was the moment….I will remember Emily’s face and her wish to play, and the fact that I tried for her but could not make it work….forever.

I know that for Emily it was just a day in the park, for Elizabeth it was another anxiety filled moment.  Butfor me, I took home some things to think about:  Granted it was another good year before we really knew what Elizabeth had or how to begin to treat her and as such what could we really have said that day. But special need moms need some special things and we need to do some special things to help ourselves as well.

Here are some of the special things we can do:

Try to be honest- in other words simply saying ” We can’t come to your child’s birthday party” can be replaced with. ” We are sorry we can’t come to your child’s birthday party because our child has SPD” then explain what that is and how it affects your child.

Try to be honest about how you feel:  I can remember smiling through it all, the fear, the pain of watching Elizabeth be so afraid.  I guess I thought showing my smile would tell the world I was strong, but in reality.  I needed to be honest. I needed to tell those around me and those working with Elizabeth how I was feeling.  How watching the therapy made me feel.  Then those close to me could understand.

Tell others what to expect from your child;  I used to go somewhere and pray Elizabeth would hold it together until we left, but I should have told others what could happen and to ask for help with Emily if the meltdown did  occur.

For those wondering how to help a special needs mom, here are some thoughts I have:

Simply be there for them, invite them to places but try to understand when they cannot come.

Ask the questions you are the thinking, in other words, let us help educate you on our child and their disorders,.

Try to explain our child to your child, that kindness and understanding from your child could make all the difference in the world to our child.

Know that if we could, we would be all the places we needed to be, and do all the things we needed to do.  But simply, we can’t

Call us and see how we are doing, knowing you care, is a gift.  Plain and simple.

Thank you for taking the time to read this,  I hope my thoughts and words will help you think of ways to support those special needs moms on their journeys…speaking as one of them…we will always be grateful.

I wish everyone a peaceful week

Home…Different Feelings, Different Days

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I learned a few years ago about an app for my phone that can tell me where my children are at any given moment.

I can set beeps for me to know when they arrive at school, leave school and I can send them messages as well

This has proved to be quite a nice security as I can take a quick peek to see that Elizabeth is on campus or that Emily made it safely to her destination.

I am grateful for the ability to know that they are safe when our days were busy and we were all headed in a number of different places. It was nice to glance down and see that they day was sort just where you expected it to be. And sometimes, Okay I have to admit, a lot of the time, it was nice to take a final look right before bed only to let myself see the word “Home” near everyone’s name.

Home!

Safe!

Secure!

I have always liked the word and I have always wanted my kids to see home as their safe haven, the place they look forward to at the end of the day. And according to my kids, they do, or should I say did? Maybe a combo of both because due to COVID I think home has started to have another emotion associated with it.

I can’t completely define it but I can tell you that Elizabeth is feeling what ever it is it for sure.

I remember how happy and so relieved and achieved she used to be when we got home at the end of a busy day. With her special needs of global dyspraxia and sensory processing disorder, her days are hard work. So the relief she feels upon knowing she can relax and stop was pretty great. But since outings are by far less than before and her schedule is really different, she doesn’t have those exact feelings anymore.

As I said, I can’t tell you exactly what the emotion is but I will tell you some of the words she said, forgive me for lack of quotation marks.

I can’t take being in this house anymore!!

I need to get out of the house today.

It is best to do some errands to get out of the house.

I miss my work and school and getting out of the house.

Note the theme that is always present: Getting out of the house.

House=lack of choice and opportunities,

I am sure we all share these sentiments as we know the pandemic is just not stopping but sometimes her emotions really get the best of her and I can see the internal struggle she is having to be OK.

Last week was simply not a stellar week for us. She was full of emotions, some sad, some mad…ok a great deal were mad. And it makes me want to help her so badly. We talked a lot and changed her days plans around. Even decided some ice cream for lunch was a good thing one day. All those things helped a bit on their own, in addition, she knows we all love her and support her. I am sure that helped a bit more too! But in truth, those feelings simply needed to be felt by her for a bit. I think that holds true for all of us, no use pretending we don’t feel this or that…right?

This week, Elizabeth’s emotions are different. So much less frustration and anger. And so far, not too many comments about leaving the house….So I will take it and take her lead this week.

This pandemic has challenged us all, everyday. Emotionally, physically and on and on….

I know for one, I want to have back the time when looking at the app on my phone and seeing “Home” by all my family member’s names elicits the simple emotion of grateful and nothing else.

I wish everyone a peaceful week

HOME…. What the Word Means in Quarantine…..

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I was watching a movie the other night that is really a classic. In the movie, the lead actor is in a fight that he knows he needs to win.

His companion, who is encouraging him before his battles, says, “You need to finish this fight and we can all go home.” Seeing this grown man speak about the thought of “going home” with such a reverence. Like you can have the best reward …home or

when your work is done…you get to go to the place that has peace….home. Or the place where you are safe…home.

Now this movie is set in the 70’s so home to those back then meant many things, I am sure. But for us, living through this pandemic has such a different set of feelings.

Home is the place we can be with those we love so much, where we can take off our masks and not be scared. It is the place we can relax, do work, zoom calls and video chat with friends. Home has become the center of our worlds currently.

As grateful for this safe center as we are, we can find ourselves looking at the walls of our homes say, on day 63 of the quarantine, and swear they are closing in on us minute by minute. Ask Elizabeth, my special needs daughter, how she has been feeling about things ( see blog from last week).

So what are some of the things we can do help us keep seeing home as safe haven it is supposed to be.

THINK BACK

I am not talking years back, only go so far as around March 15th, about the time the virus hit the U.S. What did you wish you had stocked up on that you didn’t have time to get? What do you wish you had for your children to make the time together better? If your child has special needs, what do you wish you had had time to organize or purchase for them?

So now, perhaps do organize or maybe purchase whatever you have thought about. See our store for great items for our special needs children.

THINK AHEAD

Again, not too far into the future…just a bit to see what your home may be like when winter hits or if we are required to be home more. What things do you know you will need to plan. What things did you know worked well before and you want to do again. What about: Worktime? Craft time? Workouts? Therapy times? Do you need to talk to current therapists to ask about telehealth options….just in case. Does your child have important appointments that planned? All things to think ahead about.

MAKE A CHART

Or make 5 charts! Whatever helps you put down all the things from the above on paper and our of your head. Having something to refer to…already ready…is a great tool!

FAMILY MEETINGS?

I say this with a question mark because family meeting in our world are not always greeted by cheers. They are usually introduced through clenched teeth as I say “WE NEED A FAMILY MEETING” but in this case, I mean a positive, idea sharing and feeling sharing kind of family meeting. Maybe they have things they want to share or plan as well. Plus it is a good time to share the charts or ideas you had.

NURTURE SELF.

This is an easily forgotten or pushed aside thing especially as we get busy with holidays, full days or times inside. I have learned the importance of doing this. I am not talking spa days….just simple little things to restore your reserves as the parent or caregiver you are. For me, it is working out or coffee and reading a bit. Whatever it is for you….it is important…the self care is important for all really.

So with the ever changing world, holiday times and winter weather ( if it applies) home will be where we find ourselves so much and the hope is that we can do things that keep us talking about home with the same feelings as the man in the movies.

I wish everyone a peaceful week. PLEASE wear a mask! I do for my mom and others who could get really ill.