Tag Archives: SPD

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

Why Prepping for a Vaccine is Important

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I can’t start off this week’s blog without nodding to the topics covered by the last two weeks. How are we all doing? Me? I am doing better. Writing about it. Talking about it. Praying about it…not in that order…has helped me gain reserves back.

Not fully. But so much better. It helps that Spring is starting to show itself here. And we are enjoying the mid 40’s with some nice walks and fresh air. ( hey, we were -15, so 40 is a heat wave!)

I hope you have all found a way to strengthen yours as well.

But I wanted to write about something that I was thinking about for our families. Especially those who have a special needs child who is at the age where they can be vaccinated for COVID.

I started to think about it for Elizabeth as she will soon be able to get the vaccine. Which one? Not sure. But our plan is to vaccinate her. For those who don’t know, we all had COVID last April during the first wave.

And it was scary.

At that time, no one really knew the way to treat or what medications would really help.

Our time that we had it went so slowly as we kept checking the date on the calendar to get to day 14…the date we were then told was the “end”

So now a year later, we have the option of vaccination. One that we plan to take for Elizabeth. I know that it is a personal decision but for those who are thinking about it. I started to plan out a how to tell Elizabeth about it.

I mean a social story of sorts…tailored to her age of course. But one that covers all the steps that will happen as you go in for your vaccine. As well as what to expect right after….30 minutes after…and then any side effects.

What you say and how much you say of course depends on your child. You know them best. So you would tailor the information to fit your child’s needs, age etc….

I have to say that the 15-30 minute wait that is required could be a challenge for an anxious Elizabeth. Her SPD (Sensory Processing Disorder) could really raise her anxiety and make sitting a while a lot of work. So we will need to prepare for that. Maybe bring headphones for her to listen to music to.

But telling her what to expect is really key for her success. So the more she knows about how the experience will go, the better for her. I know everyone is different, so again, this is just me talking.

I know that there are required forms to fill out…I may try to get those done ahead of time, if possible. This way I can carry them in instead of sitting and filling them out. That would only increase Elizabeth’s anxiety.

I also know that there could be a wait in line. She needs to know to expect that as well.

And then the actual shot. How can I help her prepare best for the feeling it brings. Sore arm? I need to be the one to watch her for any reaction but she needs to know to tell me if she feels anything. So I need to go over what that anything looks like….for the 15-30 minute wait.

Then it helps is she knows she MAY feel a bit off in the next day or two. I do not know about your children, but Elizabeth simply hates to feel ill. So it is important that she knows if she does feel ill it is only for a day or so and due to the vaccine working….she also needs to be able to ask for Tylenol if she needs to .

Again, I feel that prepping before hand as best you can, decreasing anxiety and increases the chance of good success.

Another thing to go over is the WHY of the vaccine. I had a nice talk with Elizabeth about why we would like her to get the vaccine when she can. She is an adult, so the conversation was geared in that direction.

I know that the choice everyone’s to make. But if the vaccine choice is one you are making. I thought it might be helpful to think of some of these things. The vaccine experience is not really the same as any other shots our children have had, so it helps to be that little bit ahead if you can.

I wish everyone a peaceful week. And please wear a mask.