More acceptance please

Warning: This blog post contains some ranting. ;)

     I must say that families affected with special needs deal with a lot on a day to day basis.  More than most will ever see or realize.  That being said, why tack on another issue?  I have noticed that there are poeple out there that don't take autism seriously.  They think it is lack of descipline on the parents part or that our children are just super brats.  I am tired of this.  Autism is a neuroligical disorder, their brains are actually wired different.  They are different.  I know that kids on the spectrum need to learn life skills and learn to fit in to some degree.  But you can not force a child to do something they are not capable of.  Would you ever see a child in a wheelchair on the playgroud and tell them to go join the race the other kids are having?  Would you force her out of her chair and demand that she walk when she is unable?  NO! because you know she is not able to.  Instead you would push her along in her chair so she could play with her peers.  You would encourage her and cheer her on and let her know it's ok to be diffent.  So why then do people insist on forcing children with autism, including my son, to do things they are not capable of?  Why throw them into a situation they cannot emotionally, physically or socially handle?  I've heard, "Throw them to the sharks, they will learn.  You hold him back to much.  Send him to my house and his autism will disappear."  Guess what, all untrue!  I would love for people to educate themselves on autism and what it entails.  I would love for people to accept my child exactly where he is, today, in this moment.  Accept and help.  If people prefer to live ignorant, and do not wish to help...then do not judge.  No one knows what anyone else is dealing with in their life.  Most don't realize the impact autism has.  So take off the judgement hat and know that we are doing the best we can with our kiddos.  We want them to learn and grow and thrive...when they are capable, willing and ready!  Autism is a true reality. Educate yourself and respect.  Respect everyone and have compassion. 

adorable

We all know that life with autism is not easy. We know that it can be a real struggle. Though hard times are present, there are also very endearing aspects of autism. Some traits that Seth has are just adorable, whether it is from autism or just Seth's personality...its down right cute! Seth is four years old now but he still has an adorable innocence. He takes myself and my husbands word as truth, no matter what. Seth is also a rule follower. Its cute it you joke with him and say "don't you tickle me!" Seth will not do it! He makes me laugh. He takes everything very literal as well. Just the other day he heard a lady say she was going to "knock you in your tail" to her son, Seth looked intently for a tail on that little boy! :) Seth groups together certain things. For holidays, he thinks that birthdays are shared, kind of like Christmas. He also thought the Santa brought his birthday gift, too cute to tell him otherwise!  Seth groups together time also and everything is "yesterday."  Whether it was last year, or that morning....to Seth it's "yesterday."  Another awfully sweet thing is that Seth repeats himself alot. He has routines or what he talks about at certain points of the day, there are several examples of this but I have a favorite. Every night at bedtime he talks about how it is dark outside, but the sun comes up in the day. Then he says the sun shows through the window in the daytime for nap, but is is dark at night. Every night, same thing. He has the same type of conversation routines at different points throughout each day. Although it is repetitive it is so sweet to watch him talk and tell a story, even if Ive heard it everyday for months! OK, I'm almost done with my endearing traits! But I have to say that Seth has no judgment about anyone.  He doesn't know if you are a girl or a boy.  He doesn't care.  He doesn't know any social cues like that, he just accepts you for what you are....you. When you watch a child live day to day like Seth, you realize how simple yet complex his mind is.  He sets aside many things that he has yet to grasp, but notes very small details of things that he sees. He appreciates beauty in things and doesn't know how to judge, wish I could be more like him in that aspect.   Seth is such a sweet child. He is full of innocence and pure love. He gives great kisses and looks at life with accepting eyes and an open heart. Amongst all of the struggles that Seth faces, he is so very sweet and so darn cute! I am very blessed to have such a sweet little man!

Family of 3!

      Seth made us a family.  We may have always planned on a bigger family, but we are happy with our family of three!  Everyone still pushes us to have another child, my response is always, "one and done!"  I feel blessed and overjoyed to have had the opportunity to have my own child.  I know many people that will never know what that is like.  I feel blessed to have Seth.  Through all the trials we have been through and will continue to go through, I would never trade him or any of it!  He keeps us very busy and we have our hands very full, so Seth will be an only child.  I know that he will have a happy and fulfilled life even without siblings.  We are lucky that Seth has many cousins close by.  God has a different plan for every person and every family.  Those plans often differ from the plans we had for ourselves!  Every person is different and every family is unique.  We should honor and respect whatever decision people make.  When that decision involves family, we should go with the same attitude or respect.  "To each their own."  So although many people don't understand or even like the fact that we are only having one child...we are content.  I know that we've been blessed and even though I didn't have two children, I am beyond thankful that I have my Seth.  Our little family of three is perfect and great and I wouldn't change a thing! ;)

Broken

There are only a handful of places that I can take Seth. We usually only do one outing per day, whether it is to therapy or to visit family. He usually loves to go get yogurt. It is just 2 minutes from our home and a short outing. It is one of our few "safe" outings. Well, our safe outing is now a "no-go zone."
Seth does this strange thing sometimes where he changes him mind back and forth. He will do it over and over, it is impossible to help him because he continues to change what he wants. He has done this before at home.
Well, he was excited to go get yogurt. We arrived, fixed our yogurt with his favorite sprinkles and sat down. On his first bite, he said no. Then, he wanted it, yes. No, yes, no, yes....I thought to myself. Why?!? This cant happen here. Great! So before he got too out of control, I said we had to leave. He freaked out! When Seth freaks, he gets aggressive. He pulls his hair, my hair, screams, hits his head and loses all control. Before I could grab him and all of our things(because he always travels with a ton of stuff) he was pushing over chairs...then went the table. And....the table broke!! I stood there stunned. Overwhelmed, stunned and still trying to get my raging son out of there!
The owner, and only employee there at that time...got mad. Not only did she get mad at Seth, she demanded I pay for the table before leaving. In the moment, I was so lost and upset...Whatever, I gave her my debit card. After barely getting Seth back into the car, unable to get him into his seat due to his rage...I broke down. He was ripping my hair out of my head, screaming and I was physically and mentally exhausted. Finally, I was able to force him into his seat to drive home. Reality hitting me in the face as I drove away.
No outing is simple. My life is not simple. No one gets it. The stares from strangers cut like a knife. I called my husband crying. Him, being the most carefree and optimistic person I know...replies with, "man, that was an expensive cup of yogurt." Well, yes it was...$225.00 to be exact.
I don't know what exactly hit me so hard. Maybe its that I never thought I would be that mom, with her child destroying other peoples property from pure rage! Maybe I feel like I have no control over my life. Maybe its just the reality that I wont ever have a care free life with my son like most people do. Whatever caused the breakdown...I broke down.
At the end of the day, the broken table was paid for. My broken spirit was just barely beginning to heal and I had to move forward. I will now think even longer and harder before taking Seth anywhere, especially when I'm by myself.
I had to post this post, I had to vent. I feel like no one understands what we go through and I hope someone else out there can see this post and not feel so alone. Or maybe have a little more compassion for what families with special needs kids go through. Phew, good thing everyday is a new day!

Four years...

     It is still hard for me to believe that four years has passed.  I have been reflecting on the past four years since Seth's birthday.  I could've never pictured my life to be the way it is.  I could've never envisioned the triumphs and struggles.  I would've never seen the strength and patience in myself.  I have to have a moment of confession and admit that although it has been four years, I still have a hard time accepting.  I never like to see Seth struggle and wonder why he has to struggle when it seems like most children are so carefree.  Seth is bound by his anxiety and sensory difficulties.  I know he knows no different, that is a slight comfort.  I fear in some ways for what the future may hold, daily I tell myself, "wait to worry." 

    In reflection of the past four years, I know that there are "beauty" sides and "beast" sides to autism.  We all know what a "beast" autism can be sometimes, so I am choosing to reflect on the beauty!   Never, never, never could I have ever imagined love so deep, pure, patient and unending until I became a mother.  Four years have only made that love even stronger.  The past four years I have learned leaps and bounds about autism, something that was originally a foreign concept to me.  I have met truly inspiring children, therapists and families.  My heart has changed over these few years and I believe it will continue to do so.  The world is so different when you have a special needs child.  The small things are amazingly huge.  The things that used to be important are minor.  Your life long goals and dreams shift to something you wouldn't have been unable to give thought to before hand.  Yet in that shift, your life is more meaningful and has more value.  I am more accepting of others, slower to judge.  My eyes are open to the struggles that are out there for many families.  Not just families touched by autism, families touched by any special need.  My heart is softened.  

     When your life is stripped of your familiar routine and you are left with the caring for your child 24/7, you realize what is important.  You realize what you can live without.  You realize how simple and precious life can be.  Everyday of these past four years I have been at home with Seth.  A huge blessing, though admittedly a  struggle at times.  Of course I yearn for a  small part of the "old"  me back.  Even just a hobby I once enjoyed. With time, I know that that will come.  Right now, I am part of something bigger, making memories daily with my little man, allowing him to be the best that he can be.  Somehow though, in the process, Seth has made me better.

     My only child, my only little boy is growing up.   It is bitter sweet and I am looking forward to many many more years of simple memories.  Maybe some less "beastly" moments would fare well also. ;)

     I am thankful for the journey that I am on and what it has allowed me to "see."  I am a better person and I will continue to pray for full acceptance of this journey.  With time I hope that I can stop asking, "why Seth?"  I hope the same for everyone else out there that may be struggling with accepting a life they didn't plan for.  That we can enjoy the beautiful moments, have patience and perseverance in the "beastly" moments  and set the worry aside!

"Three Cheers!" :)

This is too great not to share. This is worded perfectly and every parent of a child with special or different needs should read!! It may even end up on my fridge! :) It was posted by The Autism Society of Acadiana. It was written by an unknown source.


To those of you that just don't "get it" and to those of you that do:
Special needs parents wear so many hats! We also provide services to our children that many people cannot fathom. And, we do it with remarkable skills we did not know we possessed, until we needed to stand and deliver for our child. Three cheers for those of us that completely comprehend this list!
Sometimes I feel like a :
Night Watchman-Late nights because our child does not sleep.
Gourmet Chef- Preparing special diets which may include several different meals for different family members.
Service Coordinator- Planning for a wide variety of therapists.
Chauffer- How else would my child get to all those therapy appointments?
Researcher Extraordinaire!
Fearless Advocate- Because our child deserves it!
Cheer leader - We celebrate EVERY victory large or small. Believe us NOTHING is small.
We possess the following abilities or qualities:
Grace under fire(or not) when encountering annoying stares from others when out in public.
Gratitude for those that do "get it."
Above and beyond nursing skills.
The patience of a Saint.
The bravery of a Warrior.
The heroics of an Army General.
The ability to persevere under excruciatingly difficult circumstances.
Last but not least, here are a few other things you should know. We gave up countless vacations, parties, social engagements and dinners because our child would be uncomfortable or we could not find adequate care. We love being social but not at the risk of our child's safety or emotional well-being. We get tired of constantly advocating for our child, but we cannot rest until our voices are heard! Sometimes our faith is shaken, buried, hibernating but it always returns because every special needs parent is resilient!
So here's to us, the Special Needs Parent! Hip Hip Horray! Hip Hip Horray! Hip Hip Horray!
(unknown. via Autism Spectrum Disorder, through my eyes.)

silence is golden!

From the day that Seth was born, he has had extreme sensitivity to noise. While he slept as a baby, we learned that any sound would wake him up. Even walking in jeans or setting a cup on the counter would send him into screams. To this day we keep the house very quiet at nap and bedtime, otherwise...panic can errupt.
We are very limited to where we can go with Seth. We bring headphones along sometimes to help him. Some cases, nothing can help.
When I first began this blog I wanted everyone to be able to share, laugh, cry and offer advice. Now, I am asking for advice! ;)
Ever since the New Year rang in with fireworks, Seth can barely go outside. He has so much fear over hearing a firework. When I do get him outside, he is full of anxiety and any noise causes a panic attack. For example, yesterday after much coaxing...we made it outdoors. Well, there was a boy down the street playing basketball. The second that ball hit the pavement, Seth lost it. Shaking, screaming, beyond himself. I explained what it was, reassured him that it was not scary and attempted to move on. The noise continued, so did the stress. Poor little man, he needs help so he can have fun and play...like kids should!
Any advice on how to help Seth deal with noise would be greatly appreciated! It is a mixture of sensitivity and major anxiety. Don't know if anyone else is dealing with sound issues or anxiety issues...or both. Any tips?
Take care everyone!!

Support system

There were so many days in the past, when Seth was still very young, that I felt so alone. Alone because Seth was overwhelming and I felt like I was unable to care for my own son. Alone because my life seemed so difficult when compared to others. When Seth began therapy before he was a year old...that began to change. I began to chat with other mothers while waiting for Seth to finish his therapy sessions. Over time, it became so
therapeutic to vent, chat, laugh and socialize with other mommies going through the same thing! I can not stress enough the importance of finding support. Support through website, blogs,emails, groups or even social media. For example, The Autism Society offers groups that meet monthly.
I often had more "seasoned" mothers tell me to call them or email then for anything. For me, I never wanted to be an extra burden on them or call when they were busy. I chose to email instead. Email and facebook are amazing for chatting and sharing advice! It has been a true blessing to know that I am not alone. That others are right there with Seth and my family. That other moms really do "get it!"
Please moms or dads out there, find some support! I hope that one day my blog will be a place where people gather to vent or seek advice from one another. It is so important to not be isolated. Reach out, seek support and enjoy the fellowship of others...others who are in the same "boat." :)