Saturday, October 19, 2013

Guest Poster - Evelyn

(Taya) Today we have a guest poster, Evelyn, telling her kids' story.  Thank you so much Evelyn!  Again, the vest is on sale for $5 through Monday!  Let's donate lots of weighted vests to these kiddos who need them!

HI, My name is Evelyn.

When Taya came to me and said she had this ‘idea.’ I have to say I was THRILLED and have to admit that my brain went into overdrive on how to help make it even bigger and better to help as many kiddos as possible. More on that later as we finish up nailing down the kinks.

The reason I was thrilled and excited about the idea is because we have 2 Kiddos with multiple Diagnoses.

Our daughter was born with a Congenital Heart Defect (Atrium Septum Defect with primum Defect). She had open heart surgery at 7m old.  After her surgery I kept telling my doctor - something is wrong I think she has ADHD or ADD..  She just doesn't sit still, she doesn't sleep. And he kept saying no - that's normal toddler. She ended up starting therapy because of being delayed from the heart surgery.  At 1 yr old she started speech therapy - she said 0 words at that point. And that therapist will forever change our lives. She is the one that suggested looking into SPD (Sensory Processing Disorder).  At that point - I had NEVER heard of SPD. SO, an OT at the clinic evaluated her and said yes - she has SPD - and she explained it so well to me. Her way of explaining is that everyone has on/off switches in their brain for different things. And some of her switches are messed up (either on, when they should be off, or off when they should be on). For her it affects her in different ways but the biggest one is that she is a sensory seeker - Think the energizer bunny times 100!!!  She has a very hard time getting her body to ‘shut down’. So sleep or staying still to do anything is near impossible for her. We have slowly found ‘tools’ that help her to a point, but the problem is some days those tools work and some days they don’t. Some of those tools are a weighted blanket, weighted vest, trampoline, net swing, hammock swing.

She also has trouble sometimes with clothing either being too tight, too loose, not long enough, etc…  It’s hard to know from day to day, and sometimes even minute to minute what will be right.  Before she started to talk (which happened after she started preschool at 3), it was very hard to know what was going on. Once she was able to verbally tell us made things soo much easier to help her.

She is also High Functioning Autistic - which makes things even more interesting. Everything has to be a certain way, she does NOT handle changes well at all. And going outside of her ‘routine’ will cause world war III.

But, she is NOT her diagnosis.  She is a very sweet, lovable, smart girl. And has grown leaps and bounds in every way. I wouldn't change her for the world, she is our girl.

Our Son had also had some medical issues which caused him to have a feeding tube for 5m as a baby. Luckily, our daughter’s Developmental Therapist - noticed some things that he was not doing that he should have been, and also he did NOT sleep, unless in the baby swing and ONLY going side to side. SO, she suggested having him evaluated. I’m glad we did and went down that road early.  He has and is globally delayed. He didn't start walking till 22m. He was CLIMBING before he was a year old tho. He has SPD also, and is a sensory seeker also. He also has some other sensory issues: he is tactile defensive - so, touching certain textures does not happen. And he is very oral. Everything even at almost 3 yrs old still goes into his mouth. He is also completely nonverbal, so figuring out what works/doesn't work for him is not easy.

He also has Periventricular leukomalacia (PVL). Basically the white matter between his right brain and left brain is ‘damaged’ so his right brain and left brain does not talk to each other. That makes things even more interesting. Being a sensory seeker and not understanding ‘danger’ or understanding that something is ‘harmful’ is not easy for him or for us.  

He has been in therapy for over 2 years now and has made some huge advancements. He can use an ipad better than most adults. He can now communicate his needs/wants by taking us and pointing to it.

And again he is NOT his diagnosis. He is a sweet, laid back, loving boy. And we wouldn’t change him for the world.

We absolutely LOVE our children just how they are. We have both learned to adapt or help them thru their lives. So, they can possibly live as normal of a life as possible. Our hope is that getting them help early will help them more in the future.  

One parting word -> GO WITH YOUR GUT…  If you think something is wrong - keep talking to the doctors and find out what is going on.  Do NOT let the doctors blow you off..  You know your child better than anyone else.

P.S. To understand a little bit of my life - it took me 3 hours to write this - just because our boy continually kept trying to go over the side of the rail at the top of the stairs.

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