I want to welcome you all to Created With Love! We’re going to touch on many different topics
and I want everyone to share their feedback and thoughts in a polite, calm
fashion. I will set rules for our forum
discussions – be courteous and polite to me and others and we are here to
share/help each other. That’s it! Pretty
simple.
I’m starting the blog off with some inside look at my family’s
life after our son was diagnosed with ASD (Autism Spectrum Disorder). While the
posts won’t always be centered around ASD, I will touch on it a lot more. After a year of adjusting to life with ASD, I
decided I want to do more for those out there who may feel alone or
isolated. Whether your child is special
needs or not, or you don’t have a child, but need some understanding. I can tell you that I’ve been through a lot
and not just in this last year. I can
relate, so let’s have some honest, fair discussion and help each other.
It’s hard to believe that it has been a little over a year
since Hayden was diagnosed with ASD. I
remember feeling so many things – scared, hopefully, worried, apprehensive, but
mostly acceptance. For us, my husband
and I, nothing would change – Hayden would still be Hayden and we will love him
regardless. What I wasn’t anticipating
was all the things that would come out of the next year.
We have seen quite a bit, just like many parents with kids
with special needs children. It has been
a learning curve. Here’s some of what we
learned
Your child’s treatment is yours to
control. You dictate what you want for
him/her and what direction therapy will take.
While some individuals had Hayden’s best interest at heart, the plan
was not tailored around making him successful with his own
strengths/weaknesses. Every child is different and needs a plan that centers and enhances their strengths, while taking into account what they struggle with. We had to take a stand and move on, which leads me to my
next point…
Go with your gut instinct. No one knows your child better than you. If a
therapist doesn’t feel right, switch.
Don’t feel guilty about doing it.
It’s your child and for him/her
to be successful you all need to comfortable with the therapist, especially
when they come into your home. We spent
5 months with the wrong therapist.
Hayden started acting out more and was regressing. My husband and I made an effort to try to
understand what had changed and my gut instinct told me Hayden and his
therapist weren’t a good fit. We are
with a different agency now and couldn’t be happier.
Be open to change. It goes without saying that having a child
with special needs can make life unpredictable.
You can’t expect an outing to go the way you thought. Roll with the punches. For an ASD child many
things can happen (e.g. sensory overload, trouble transitioning) and you must
adjust to what is happening in the moment.
This was something we struggled with in the beginning, until we
understood what we needed to do to make things smoother for Hayden. He has difficulty transitioning from one task
to another, especially from a preferred task to a non-preferred task. Overtime, and with help, we learned to plan
and give Hayden time to prepare. It
usually consisted of a verbal warning of time left on the current activity. After a while, we started using the
First/Then technique. Both tactics were
extremely effective for us. The point to
this is that we had to change our whole way of thinking about a situation to
avoid making Hayden uncomfortable and start to have a tantrum.
Learn to lean on your spouse/significant
other and family and friends. We would
not have made it through this last year without our commit to each other and
the unending love of our family and friends.
My husband and I needed each other a lot. There were times when I was high and he was
low or vice versa. We took turns being
strong and we neither of us were strong, our family and friends pulled us
through. Words can never express the
thanks we have for those who helped us in anyway.
Always have FAITH!
When you have a child with ASD (or special needs), you
realize what you take for granted.
Things that we thought were so easy are sometimes difficult for Hayden –
a prime example being transitioning. Up
until Hayden’s diagnosis, I didn’t think about all the things that go into us
being able to do anything. His biggest
obstacle is talking.
He’s not non-verbal,
but he can’t verbalize what he wants and/or needs. He is getting much closer to talking. He jibber jabbers and makes lots of noises,
but no words, yet. He is able to shows us what he wants/needs, by bringing it to us or getting it himself. We are working on a more functional approach for him to let us know, but it takes time. Last year, he wasn’t
saying anything or showing us his wants/needs. The progress he made is
amazing!
He is an inspiration
to my husband and me. He is a busy kid,
8 therapy sessions a week and 2 half-days of school. It takes some finesse, but we manage to get
it all in without overwhelming him. He
handles it all like a champion. We’ve
learned over a year how to space things out and to schedule when he is most
responsive to therapy. Downtime is
important to ensure he doesn’t become overstimulated. This is something I never realized was so
important until I saw its impact through my son’s eyes.
I’ve learned a lot through my son, especially about
myself. I’ve learned to be more patient,
show a lot more kindness, accept that everyone processes things differently,
love people for how different they are from me and never give up. Some of this change was forced and I fought
it at first. There have been many “AHA”
moments this year. I thank God for
bringing me through and showing me to trust, once I did things became
easier. If you know me, you know this
was difficult for me. I have trouble
with open trust and not being able to fix something. The point that I had to accept was that
nothing had to be fixed, Hayden was Hayden.
He processes things differently and I had to adjust. Once I stopped trying, things got
easier.
We still have our days.
Who doesn’t? I’ve watched him grow and change and adapt to everything
thrown at him. I know he’ll be ok. He' smart and resilient. So, here‘s to the next year, next month, next
day, next hour, next minute.
I hope this first post hasn’t scared you off. Over the next few months, I’ll share more of
our ASD journey. Keep an eye out over the next days/ week
for new recipes, craft projects and life lessons. Peace and love to you all!
Always,
Sheri
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