I wish I could understand why some parents of children on the spectrum say they are never frustrated. Please enlighten me on what is so different...I know our children are affected in a variety of areas and at different degrees, but you can't tell me that you are able to stay patient through every single transition and every little thing that should be so simple.
So, here is my frustration for today...
We have been so lucky with Brycen being overall healthy. I don't want to jinx anything, but in almost 4 1/2 yrs, he has only had to battle one ear infection and one pink eye infection, a handful of colds, and a couple bouts with flu. Very, very lucky!
As soon as Brycen stepped out of the school van, I saw how flushed his face was but he frequently has a flushed face because of how active he is. Of course he was still excited to see me, ran into the house like normal, threw his coat on the floor, took off his shoes and put them by the door, and immediately ran to the window to look outside. The same old routine every day when he comes home. So when I bent down to give him a kiss, I could feel how warm he was.
Since some of you do not know Brycen very well, I feel I should explain that Brycen does not exhibit symptoms of not feeling well like other kids his age. He won't just lay around if not feeling well, obviously can't talk to us and tell us if there is something wrong, he continues his active and sensory-seeking things like every other day. When he had the flu last year, he was running around like normal, all of a sudden stopped to vomit (and cry because he of course did not understand what was happening and didn't want us near him to help him), and then went back to normal activities. This happened at least two more times that day, with NO WARNING each time.
So, back to today...common sense parenting tells me to take his temperature and give tylenol. Brycen was having no part in the ear thermometer and I know for a fact he would never allow me to put a thermometer in his mouth or under his arm. He ran from me, screamed, covered his ears and eyes...I attempted to demonstrate what it was and that it didn't hurt, but of course I knew it wouldn't matter. Luckily, he loves taking Tylenol so that wasn't a fight. I know we are going to need to invest in yet another type of thermometer (probably the kind that you just point at their forehead) so here is another example of money we have to put out there for items that are special to Brycen's needs. I don't even know the cost of these, but I will find out soon I guess.
Something that should be so simple just isn't for Brycen. A bloody nose and mouth on Monday afternoon after falling on the floor was another example from this week. He obviously hurt because he was crying, but wouldn't let us look at his nose or mouth, or hold a washcloth up to catch the blood. He wouldn't allow us to comfort him (probably the HARDEST thing we have ever had to encounter is our own child not wanting our love and comfort when he is upset!) so our only choice was to let him run around, wiping the blood on his shirt, and just following him to make sure it wasn't worse than it looked.
Each time we encounter a task that is so simple like switching to winter coats and a hat, we have to be patient to get through it...or like today and on Monday, we just step back and breathe, realizing it's just different.
It's just a whole lot of different.
"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
Wednesday, November 3, 2010
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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.
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.
Well I can tell you those forehead thermometers are around $30! We had to get one for the same reasons about 2 weeks ago! Vinny is pretty much the same way! Never know if he really is sick without some really obvious signs!
ReplyDeleteAlso I think sometimes when people say they are not frusterated, they really are but wish to not admit it! It's hard for me to come out with it because I was taught all of my life to buck it up and deal with it! No need to complain! It feels bad when I can't handle things! I put a lot of blame on myself, which is something I am currently working on! But the truth is most days suck and I just try to take the moments where it is not intensly loud and enjoy them!
That little guy is soooo lucky to have you! Keep talking I love reading what feels just like my life in print!
Its not Harley it's me Jeni!
ReplyDeleteYes, I stopped at wal-mart and it was $36 and some change! He has been so aggressive today...kept hitting and headbutting my mom for no reason when she wasn't even talking to him or near him.
ReplyDeleteI get what you are saying about the frustration thing...though I've always been one to wear my heart on my sleeve so I don't really hold back how I feel, especially when it comes to something like what Autism has thrown at us.
Thank you for reading...I'm so glad to have found so many of you that understand and can empathize with me on all of this.
We had to get the forehead one too, Sierra did not want it on her head at all! We had to make a game out of it and use it on everything including the dog, then she let us do it.
ReplyDeleteI say that I am not frustrated by Sierra because I am not frustrated by her. I understand that she needs to do the things she does for a reason. I do get frustrated when things happen to her and I can't help her, like when she was stung by a wasp. Maybe that is what they mean.