"When one door of happiness closes, another opens;
but often we look so long at the closed door that we do not see the one which has opened for us."
Helen Keller

Friday, July 23, 2010

If you want honesty...this is the one to read.

Many people have mentioned that they like my "honest" posts that state it like it is with Brycen. Well, all of my posts are honest as I'm not one to hide how I feel as I'm just not that good of an actress...so, here's another one for ya...
Note my two recent statuses on FB that said how much I missed my kids. I complain all the time about needing "me" time and never getting it, and here I had almost 36 hours away from the kids and all I did was think about them while I was in Des Moines for work.
So, I head home as soon as I possibly can today, absolutely ecstatic to walk in the door and kiss those sweet faces! Lucky for me, both of those sweet faces were also happy to see their mommy and gave hugs and kisses right away. I am excited to have an evening with them without having to do any dishes (thank you, Mom!) and no work to think about until Monday...and then it happens after he needed to be coaxed inside....
MELTDOWN (please don't confuse a meltdown with a temper tantrum...temper tantrums cease very shortly after starting on their own and are typically due to the child wanting some kind of attention...meltdown is a word frequently used in "disability world" due to the extreme nature of how much happens, for various reasons that are possibly unknown, the length of time, the inability to distract and calm once in crisis mode, the child is not capable of using this tool as a reason for attention, etc, etc)
...throwing toys, shuffling toys in anger, couldn't decide what toy to play with, then throwing the two he chose to bring out to the living room, hitting, screaming...which then led me to decide he just needed a bath, snack, and was going to bed. Well, implementing the bath became a battle of him wanting out, but me knowing he needed to be washed up from the sunscreen he had on his skin from throughout the day...throwing water outside of the tub, trying to climb out, hitting, pinching, gagging, almost vomiting, and screaming until I let him out. Then he was mad that I was not going to allow him to play with toys. This resulted in a full-blown me attempting deep pressure hugs and rocking and Brycen not tolerating anything for the next 20 minutes while I wrestled to keep him and I as safe as possible (meanwhile Grandma got Aubree out of the room and into the bathtub to keep her safe and distracted from the events). Finally, he began to wear down and I started to use a social story with "Brycen/Thomas train" as the character and that "Brycen/Thomas" was going to calm down and drink some juice and eat a snack like a good boy. He finally gave in and ate his snack and then within a couple minutes of sitting in the chair with his "calm down" sensory toys, he fell asleep.
Lessons learned: No stimulating activities right before bed mixed with heat and change of routine with Mommy and Daddy both gone overnight probably factors into more than we expect. While some people may have given in to letting him just eventually play or stay outside longer, my mission is to get him to eventually realize that WE are the parents and WE make the rules and he will need to just accept what we decide because we do it in his best interest and for sake of routine which we know is necessary for him to continue to thrive.
Now, here's for the completely honest truth...I am mad, hurt, and disappointed...I had a picture in my head of a perfect evening with them after returning home from two days away. I leave to find myself missing him and Aubree like crazy, create this fantasy in my head that our life is close to normal after hearing stories from others at work about their children and all that they do that is fun and "normal", then return home to have reality thrown right in my face. I get that with him and most children with developmental delays, it's usually two steps forward, one step back (maybe even two or three), but why did it have to happen tonight? Why couldn't I foresee where this was headed and get it stopped before he went into crisis mode? Why does it hurt me so personally and make me think he doesn't love me or doesn't want me as his mother when things like this happen?
I don't expect or even want people to try to answer those questions...the point of me sharing this story with all of you just a mere two hours after it all started is for you to see the honesty I promised in this blog. I don't want advice on how I am supposed to feel or how "of course he loves you"...I just want people to listen and to see how hurtful it is to me as a mother to watch my child go through something so traumatic that I can't stop or sometimes even pinpoint why it is starting, much less be able to even reach him to bring him out of his "world" and back into mine so I can soothe and kiss him to make him happy again. This is reality for us...and it has only taken me a year to figure out that just when it seems too good to be true that progress is being made and meltdowns are happening less, something happens like this to make all of those "acceptance" feelings fall to the side and I once again wonder if I am strong enough to do this anymore.
Now the bright side is that he is in bed now and hopefully stays there all night after the traumatic and tiring events of the evening...and tomorrow is a new day and most importantly, it is his 4th birthday! That cheers me up just a little bit AND I got a nice workout in my arms tonight with all the attempted pressure and rocking!

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Autism and Our Family

"Autism"----It's one word that can change the life of a child and family in so many ways. Autism Spectrum Disorders are being diagnosed at a rate of 1 in 68 children currently. If you do not already know someone that has been diagnosed, the statistics say it won't be long before you do.

Our son developed typically until around the time he turned 2 years old. We heard words...we saw him play with other kids...we watched as he played with his toys appropriately...we made eye contact with him...overall we understood his wants and needs. In a matter of a few months, that was all taken away from him. He began lining up toys, lost all of his words and signs except for one word "ball", ignored other kids, could not sleep through the night, lost eye contact and the ability to follow directions, and he had no way of letting us know what he wanted or how he felt. It was heartbreaking to see something happening to our child that we couldn't stop!

Brycen began receiving home therapy 1-2 times per month for about 6 months before we realized it wasn't just developmental delays. We knew it was Autism...we just didn't want to say it outloud to anyone. He was officially diagnosed with Autism (classic form and regressive), as well as Mental Retardation in August 2009 by the University of Iowa Hospitals and Clinics.

We continue to learn as we make our way through this journey with Brycen and we will continue to share this journey with you on this blog! The blog has been a great therapy for us to be able to vent our frustrations and struggles with accepting that we have a child with special needs, while sharing how blessed we are to have a child teach us what life truly means. It has also been a great way to inform others of his progress and changes over the last couple of years.

Thank you for your support of Brycen and our family! We hope you are able to learn something through this blog no matter if you are a parent of a child with special needs or a neurotypical child, a teacher or therapist, a family member, or just someone that is interested in the journey that a family goes on as they learn their child is battling a life-long disorder.