Tag Archives: SPD dyspraxia family issues success

Here is How Our Vacation Went and Other Fun Things

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So we decided to take a vacation this year. And like so many people, it has been a LONG time since we ventured out of the familiar streets of our city.

We decided to pick a week in June to go because we wanted to relax after all the graduation events for Emily, and sort of side step any basketball obligations that our son Michael had.

So we packed up and headed to a very quiet and sparse part of Virginia Beach and I have to say it was a lovely week of doing nothing, nothing and more nothing.

Everyone enjoyed it. Elizabeth loves the beach so much and could stay in the waves for an entire day and not want for anything else except an occasional snack. I am not kidding, she was out there 2 plus hours one day. Elizabeth has SPD (Sensory Processing Disorder) and one would think she might hate the feel of sand and it being stuck to her feet, hands and most surfaces but she doesn’t. In fact, she loves it all.

Now sleeping in a new bed? Not so much. And that my friends is the true struggle for us for vacation.

It is her fear of the dark that started all this sleeping anxiety. And trust me, it isn’t dark by ANY means in ANY room she has EVER been in to sleep.

There are nightlights, flashlights and cool outdoor lantern with adjustable strength lighting…all there to help her KNOW she can use them and all will be well.

We show her the place she will be sleeping weeks out from our trip via the websites we can access.

We talk about the room and where she will put her lights.

We assure her that she will have a flashlight and that she even has one on her phone.

AND STILL she struggles to sleep. And she knows it too because she made sure to get her own Melatonin “to help me sleep”

The first few nights are typically the best because, and this is my theory, she is still rested from home and so she is calmer and can handle to new bed/room better but as she increases in her lack of sleep and increased tiredness it is harder for her to fall asleep and that leads to more tired and well you get the scenario.

But I have to say, that she is quite the trooper when it comes to being tired, she just kept on beaching it, sitting on the deck and relaxing.

But the agitation was slowly creeping in by Friday. She was struggling to stay organized and needed help with things she would typically blow through doing and if she didn’t want to try she would get frustrated and grit her teeth. And our last night of vacation saw us hunting down a place that could do a to-go order or had outdoor seating that didn’t require a 2.5 hour wait ( kid you not) so we finally found a place and it was late. So Elizabeth hung in until she had eaten then she was “ready to head on home” only no one else was done. It was here I could see that she how hard she was working due to her system being tired. So we all finished up and headed out to which she then said ” Anyone want ice cream?” I laughed because she felt relaxed out of the pressure of the restaurant when she was tired and it was loud to then be calmer again. She really is amazing in how hard she works and she knows she is loved so very much.

But the thing that is hard for us is that we know she struggles with this one thing and we have done all the things we can think of to make it easy for her but the struggle is real. And it is hard to watch her disorders affect her days so strongly.

Like I have said so many times before, in my opinion, it all begins with understanding your child and their unique needs and how to support them.

I think that the things we did for her to help her were the best we can do and that communicating with her helped us understand her feelings and to learn if we can do anything else for her. Especially on the car ride home when we were in hour 4 of a 9 hour ride home and she says “Well, I am so tired I am glad we will be home in a few minutes.” We smiled and very gently broke the news to her that she had some time in the car to go.

But I have to say she slept like a champ that night when we arrived home!

So how would I rate the vacation?

I would so give it a 9.5/10. It was a blessing!

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

The Need to Look Ahead

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So as Michael gets home today from school and I wish him a Happy Spring Break.

I started thinking that very soon Michael will be starting his basketball training and games. We did not know that he was planning on this until just a bit ago, so we have a bit of planning time ahead of us, don’t we?. Oh, and those games will be on the weekends. About an hour away. Every weekend from Mid April until the end of May.

And I started thinking about Elizabeth and what will she be doing when we are gone. Because there will be a few times that John will be on call and I will need to take Michael.

So where will she be or go?

Prior to COVID, she had her work, a significant time working with her tutor on the weekends and other activities. Some things have come back to a slight degree and others not so much.

So that leaves the question….what will Elizabeth wish to do?

Will she want to go to games? Probably, but not every one.

Will she want to stay home? I am sure she can but not everytime.

Will we be able to arrange for a friend to hang out with her while we are gone? Probably but not always.

So this puts us in a situation that I can remember from years before…called Oh-No-Now-We-To-Figure-This-Out-In-A Hurry. Part two of that title goes something like….If we only had more time we could get things pretty well set.

So while Michael will be excited, we will be that as too we will also be busy putting some pieces into place!

This got me thinking of the importance of living in the moment but keeping an eye a bit ahead…just a bit into the future.

When Elizabeth was younger I learned that just because I wanted Elizabeth to be in a certain camp, when she was younger, did not make it so. Especially when they filled up all the slots MONTHS ago.

Or happily deciding which therapy and time we FINALLY decided on to learn that all that debating lost us the opportunity to pick any.

Maybe one friend or companion is just amazing but when something happens in their life and they cannot be with your child, what happens then? I learned that having 2 or more is the ticket.

I have learned alot in the 23 years on this journey with Elizabeth and have made some really really bad decisions and some really good ones. I have learned from both. For those who don’t know, Elizabeth is my daughter with special needs. She has SPD ( Sensory Processing Disorder) and Global Dyspraxia. Both are intricate and make life a great deal of hard work for her each day.

So will all this in mind, maybe now is a good time to think about penciling a plan for summer. Summer is actually is that things just a little bit ahead.

I know! Summer already?

But yes!

Just that bit ahead helps.

COVID is still a factor so that requires some thought as well.

What therapies are you thinking about? Who do you need to call?

What activities? Are they up and running? When do you need to call by? Who do you call?

Who do you think will be with your child as a companion, if that is in your plans.

I have learned one great big lesson in this journey and it is that I like having time on my side and not feeling the time crunch at all. Not always doable but I have to say, I certainly try for this!

So as we sort of scramble for our schedule in April and May, I also offer that the need to look ahead is real. And the gift of time feels wonderful.

I wish everyone a peaceful week and please keep wearing your masks.