Starting to make sense

Well....life got crazy and my blog got left behind. But I'm back...for right now at least ;)
    I feel that life has gotten even harder these past several months...but the pieces are starting to come together. Seth is in the process of getting diagnosed with mitochondrial disease.  Devasting.  This is not what we ever expected in life. At all. But it is making more sense as to what Seth has been dealing with the past few years.  Around age 3 he started having fatigue, leg pain and muscle weakness.  His naps were longer and he didn't have the stamina he once did. He had just learned how to really run. He loved to have races. His legs began buckling under him when he tried to run. He told me his legs were "tired."  At age 4,  He started preK at 4 days per week for 21/2 hours per day.  Just to put his fatigue into perspective, this year, age 6, we are hoping to make it to school 2 days a week for an hour.  His progression has led to new symptoms as well.  His latest OT eval has him "below age 4" in his skills. His learning is delayed. His weakness is making it hard for him to hold himself up when sitting. He has severe heat intolerance and can't be outside at all in the heat. He has extreme fatigue and sleeps for 14 hours or more each day.  His muscles are getting weaker and he's having respiratory issues.  My boy used to ride around our neighbor hood on his bike.  Now I push him in a stroller.  There is nothing more heartbreaking than watching your baby decline.  Now we know why Seth never wants to leave the house, what we once thought was anxiety..we now know is fatigue.  We thought he had transition issues when arriving home from outtings, but it was exhaustion. Him not wanting to go outside to play...wasn't anxiety..now we know it's heat intolerance.  Seth resists anything that will take the very little energy he has.  Getting him to his therapy sessions is so hard.  We have also decreased the time and activity level of therapy as well.  We are learning and researching more everyday about how this diseases affects our Seth.  It's a learning curve, like when we first learned of his sensory issues and autism. he has many other issues facing him but this covers the just of it.  We have a lot of learning and processing to do with this on our plate.  I literally give everything to my Seth and making sure he has all he needs in life.  He is my life. He has made me who I am today. He continues to amaze me with his heart for Jesus, his sweet soul and his strength.  Just yesterday we went to the grocery store with his new stroller....he told me "my legs didn't get tired at the store, I love my stroller." I'm so glad he can tell me things like this...I know we are doing what it right for him.   The biggest thing is conserving his energy, letting him rest and keeping him healthy.  This new road is scary but I know God will lead us where we need to be and show us how to care for our extra special boy.

There are good people all around

When so much of your day is a struggle, a little kindness goes a long way.  Seth struggles with many things and sometimes the days can be unbearable for the both of us.

Recently we have seen kindness and love, even in strangers.  Seth had to do bloodwork which is known to cause violent panic attacks.  Physically we can barely handle it.  So I called the lab the day before with a crazy question...sure the answer would be no. "could we draw the blood from the car..?" He will be strapped into the car seat which will help with the physical battle.  Also remaining in the car will help with anxiety and transition. She said yes!!! Very nicely too!! She was amazing and it helped Seth so much! She could've done what was easier for her but she didn't. She had compassion and kindness and she made our day that much better!  

Even when someone allows us to go before them in a check out line.  We only go to very small stores with Seth and only on the perfect day.  That gives him the best opportunity to be successful.  Any kindness on an outting goes a long way.

We struggle with transiitons, anxiety, fatigue, pain and even criticism from our own family.  But when a friend understands or a stranger reaches out...You realize that there is good,  that there are good poeple out there and there are blessings all around.  Even if it's just a text that says "I understand, praying for yall." Kindess can go a long way.  Kindness,  no matter how small can change the way someone's day is going. It can truly touch someones heart in the best way.  I always try to be kind, you never know what someone is dealing with in their life.  Kindess can be someone's miracle to keep on going...to not give up...to not lose their smile.

Impressed

Seth impressed me today.  He is continuing to learn how to cope and know his own needs. Such an amazing thing! It's slow,  but when he displays this it is just awesome.

He loves to print pictures out on the computer.  He thinks of his favorite things, usually different vehicles, his wall in his  room is full of these pictures.  His recent obsession is trailers. Trucks pulling trailers. Specifically.."trailers with two wheels and a stand up thing." Seth tells me that quote a million times a day. So he wanted to print a "trailer with two wheels and stand up thing with golf cart on it.". Moving on with my point....haha,

We had a doctors appointment today and he asked to bring his golf cart picture. Of course we did. He held onto it throughout the appointment.  He studied it, talked about it and found comfort in it.   He began to get anxious so he hid in my arm and stared into his picture.  He found comfort in it, almost as if he knew he needed to bring it to the doctor that day.  When he started to fuss I would look at it with him and we would talk about parts of the trailer and golf cart.  That little picture helped him on a level I would have never known.  Seth knew, I really think he did.  He helped himself today.  After watching him struggle with almost everything on a daily basis, this was amazing.  I hope and 

pray he continues to find ways to help himself, cope with difficulties and try his best to stay calm in stressful situations.  I'm so proud of my little man and...he's still carrying around his picture :)

Little bit lonely

I have to say, it's a bit of a relief when people don't constantly expect us to do things or go places.  I always had guilt for always saying no.  Now, we don't get the invites. As much as its a relief, it feels lonely.  Honestly, we couldn't go anyway, but sometimes simple words would go a long way. "wish you could come, but I inderstand.." "Miss you, hope to see you soon." I am beginning to feel forgotten about.  We are isolated to the point where somedays we cant even go outside much less leave the house.  Having poeple over or going to  visit others is a near impossibility at this point.  It's hard, it's lonely.  It's hard to see everyone doing fun things with their children while I sit indoors dodging meltdowns.  It could be worse, I know families are living in hospitals with critically ill children.  I count my blessings several times a day to keep my heart and my head in the right place. I am blessed! But I don't discount my feelings either.  Sometimes a few nice words can go a long way in someone elses heart. It can be lonely and it's nice to know others haven't forgotten us and still care.

It just hurts

It never gets easier to watch your child struggle. Watch them hurt. Watch them be left out. It hurts even more when they realize they are left out.
      Seth is learning his limits. Which is a great thing because he spares himself of meltdowns and days or aggravation from over stimulation.  Seth had a field trip to the fire station today. His school is a small home school so he went from our house to the fire station with me. Great for transitions and such. His teacher is great. She talked about this field trip for two weeks. I did the same. Seth loves fire trucks and has been excited to see them with his friends.
     This morning he did not want to go. He just didn't. This usually means he's anxious or knows he can't handle it. I always encourage him to try, even if we don't get out of the car...just try. Give it our best shot.  He did. Got in the car and we arrived to see all of his friends happily going into the fire station to see all the cool things.  Seth cried. Tears rolling down "I don't wanna go." I know Seth. His heart wants to, he wants to be with his friends getting to see firefrucks. He sees them doing it and wants to. But his mind and his body won't let. His anxiety and sensory system hold him back. I give him several minutes. He cries and says angrily "I want to. No I don't want to." an internal battle so familiar. Must hurt him to be held back by himself. Hurts me as his mommy that I can't fix it. I can't take it away, I can't take him in to enjoy a great time. Hurts a whole lot.
    I stay positive for Seth. "it's ok buddy, maybe next time. Let's go do something fun together now." His tears roll for a while. We end up buying a happy face pillow at the nearby dollar general. (Seth loves retail therapy) This pillow with a giant smile gave us both a smile. He then asked for fast food. Why not? Comfort food it is.  It hurts but it is what it is and we will carry on. Find our own comfort and happy. Maybe next year, maybe next time...Seth won't be left out. This happens a lot and will happen again I'm sure. I will always be here to try and make it better for the love of my life, my Seth.

Accepting and finding peace...

Well, it may have taken five years but I feel like I'm getting better with acceptance everyday.  I've learned so much about how to help Seth.  About what comforts him, sets him off and how to tailor to his needs.  Life isn't easy, simple things prove to be complex.  Yet with accepting this and finding joy in each day...it actually makes life easier.  Stressing about what I can't change makes life hard.  Wishing it were different or easier only sets us back.  Learning to stress less and go with the flow more has made everyone more peaceful, even Seth is more relaxed.   We are finally truley accepting that our life is different.  Different challenges but also different beauty! I've learned somedays all Seth can handle is sitting home with me making lines of cars.  Instead of getting frustrated and trying to make him do something else...I sit with my sweet boy.  We build lines, we snuggle, we relax, we regroup.  Not fighting our reality has been a blessing.  Our home is more peaceful.  Seth is learning everyone is different and that's a good thing.  He even thanked God in his prayers the other night for making everything beautiful and different....melted my heart. I still have tough days where acceptance is hard but I've come so far.  I'm so thankful Seth has shown me the value in difference, the beauty in perspective and the peace of acceptance! I am eternally grateful for the gifts my boy has blessed me with....just by being him! 

Guilt

Do we apologize for things we have no control over? Do we say "sorry" when things are not our fault? I have so much guilt over things that are totally out of my hands.  I feel as if I miss out on so much. I feel very isolated and I am often absent when my friends and family need me or want me around. 

I have a giving heart. I enjoy being there for people. I used to enjoy volunteer work. I always hoped I could help my sisters care for their children.  That I could be people's "go-to" in a time of need. But I am usually unable.  I can hardly even make it to family functions or casual time with friends.  None of the isolation is by choice. It is what it is. Seth's needs right now out weigh anything else. It is extremely hard to break routine to be there for others.  The guilt comes in because my heart wants to be.  I want to be there. Yet I am unable. It's so tough.  I always want to say I'm sorry. I'm sorry I can't come to your birthday dinner.  I'm sorry I can't watch your child for that appointment you need to go to.  I'm sorry I didn't make it to help you move.  I'm sorry, I'm sorry, and I'm still sorry.

I know it isn't anyone's fault and maybe the guilt I feel is abnormal.  But I think anyone would feel this way.  We are social by nature and naturally want to be there for each other. So, although I tend to my family's needs And I am thankful I am able to be there for my son...It's still tough. I know I am doing the absolute best I can but I am still sorry I can't be there for other people too.  I try to stay positive and hope one day it will get a little better. Until then I will keep wishing I can do more but keep loving my little man and being his #1 supporter and #1 advocate. He has my heart and is the most important part of my life and that I will never apologize for! :)

Beauty after the storm

We have all seen these words so many times. "you can't appreciate the sunshine unless you go through the rain." Or "you can't have true joy until you know true pain."

Well....I always told myself that I appreciate my blessings and yes, I see the point but I do think you can have sunshine even without storms. Until this past week, then I realized the truest meaning of this phrase.

Usually every evening Seth plays outside. We go up and down our street and play in our driveway.  This routine has become monotonous. Sometimes I feel blah about it, sometimes I take the moments to breath in fresh air and look up at the clouds. It's usually kind of refreshing.  Well the past week we didn't have this time.  Seth would scream most of the day. He was unable to play indoors. He could barely stop crying for 20 minutes before it started again.  He didn't even want to go outside, he didn't want to do anything. Not his favorite things or his routine either. Just scream, just cry.  Such a setback. It was horrible. Watching my sweet child miserable is the hardest thing in the world. Feeling so helpless and overwhelmed makes me miserable as well. 

Well, the other night he calmed down for a little while and then actually agreed to go outside! I tell you, that trip down our street with Seth...fresh air...his smile...I felt like I won the lottery! I was on cloud nine.  I've never been happier to do our "routine." 

Now I get it. I really enjoyed our "sunshine" moment after that storm. I soaked it in, I cherished each step. I was full of complete joy. Just seeing my sweet boy happy and playing, outside....magical. So maybe terrible storms do make you realize the sunshine.

I am always thankful for our good days. I'm always thankful for our health. For our family. I live being thankful. But that joy, that day...was extra joyful. Extra bright sunshine once our storm had passed.

Side lines

As Seth finished up his first year of preK 3 just last week, I still have an image in my mind.  Him standing alone on the playground...watching his friends play.  

Seth has always been one to stand on the side lines. He is extremely cautious.  He doesn't like the unpredictability of others. I remember at his mothers day out program, he wouldn't go near the toy box.  Too much hustle and bustle around there.  His teachers kept a small airplane in a cabinet.  When he would go there two mornings each week, that's what he played with...alone.  For two years.  

The same airplane. I just can help but wonder if Seth thinks to himself why he can't do what the other kids are doing.  Why he can't hop into the fun jump with his cousins or walk through a group of people to go find a toy.  Does he care? Does he see the difference? Or is he content and satisfied being on the sidelines where he feels safe?  

Of course as his parent it hurts to see him standing alone. Watching. Standing. Alone. I wish he could interact more often.  But maybe my heart is the only one feeling this way, maybe Seth is just fine.  Maybe one day I will know how he feels about this.  Maybe it will get better, maybe we will find better tools to help Seth along.  

I just want Seth to know that he is incredible.  Just because he stands alone and doesn't do all that the other children do...that he is amazing. He works so hard everyday.  He works just to do what we all take for granted as simple.  He works to learn what we all learn and comprehend without even trying. Seth is my hero.  I want him to know that even when he's standing alone, he is never alone. I have his back. I'm right there buddy, I love you and I'm proud of you no matter what.

Moments

It has been too long since I've written. I am trying to get back in action. So I'm just going to pick up writing from now. I can't try and backtrack that would just be overwhelming to attempt :)

Yesterday Seth was having a hard time after nap. No child should ever have to experience pain of any kind.  Seth was in pain, pain with no voice, no apparent cause.  He was crawling in his own skin. Unable to stop kicking, screaming and crying.  I picked him up and swaddled him in his blanket and held him as tight as I could. I told him "mommy will rock you until you feel better, mommy is here." Back and forth, back and forth, back and forth..the kicking stopped, the crying ceased and I fell him relax. Back and forth, back and forth, back and forth...I must have rocked him for 20 minutes.  His eyes on the ceiling stimming side to side as if to try and calm himself.   He was in a trance and then he looked at me, right into my eyes and just stared.  Stared with a look of innocence, dependence and gratitude. Almost as if he wanted to say "thank you mommy, I couldn't calm down on my own." it was a tender moment. Continuing to rock he pointed to the door. He was ready to get off the bed and out of the room and try to move forward.  I carried him to the couch where he laid on my chest for another half hour.  He then got up with a smile and went to play with his cars.  It isn't always easy and is often heartbreaking...but I know Seth knows I'm here for him and I love him more than anything...through the rough and tough and tiring, o how I love my innocent little boy.

Love & Joy found in a puppy

          Well, I read and read about dogs for children with autism.  Even service dogs.  I read how calming they can be to kids and how they become a trusted and loyal friend.  So after a year and a half of research and contemplating if it was a good choice for Seth to have a dog, we got one! A black puppy was found by a family friend off of a busy road.  So, she became ours.  No pure bred pup could be better than this sweet little mix who is just happy to have a home.  Several months have passed with her as our new family member and we are so happy.  "Sissy" has had a positive impact on Seth.  Even the transition of having her in our home went smooth.  That was a major concern of mine because it is such a routine change, but all Sissy brought was joy.  Of course Seth still has a few tactile issues with her.  He doesn't like her licks, when she jumps or when she sits on his part of the couch! haha.  Yet still that little doggie radiates joy all day long with her wagging tail and puppy smile.  Seth picks up that joy.  Seth has had a slight reduction in his meltdowns since Sissy too.  He runs with her, plays fetch with her and always wants her to play in his room.  I call Sissy our "little ball of happy."  That's what she is.  She bounces around our house full of happiness, peace, contentment and joy.  I am happy and feel so blessed that Seth will have a loyal companion to grow up with.  A friend that loves purely with no condition or judgement.

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." :)

The affect autism has on Seth, and so many others...

       I can honestly say that when Seth was diagnosed I had no idea how much autism would affect him.  Now I realize, alot comes along with autism.  It brings with it delays in motor skills, anxiety, ocd, sleep issues, sensory problems, routine and social issues.  Even muscle tone can be affected.  I know that many kids struggle with autism and other issues that come with that.  I aslo realize it could be worse for Seth.  My heart always goes out to any family living with struggle.  This is just Seth's story with autism.

I first want to say....I hear often from other moms and have this complaint myself, that people judge their child as a brat!  Before judging just imagine what it would be like to live in a world of confusion, anxiety and not understand many things.  Add onto that, poor communication and a sensory system that causes physical pain and makes your feel very uneasy in your own skin.  This is all day, everyday! I am sure if any of us had to live like that, or even worse than that...we would lose it!  We would act out or act up.  We would just meltdown over anything! So please, let's all have compassion for what these sweet little children are going through.

Seth is rigid with his routine and has alot of difficulty with transitions.  Anything can cause a meltdown.  He has trouble with play dates because of his anxiety and ocd.  It takes alot for him to share, and he is sometimes  unable to do so.  He also can not handle others messing or playing with his things.  Mostly the lack of control.  Seth always has to have control, or tries to have control anyway!  From closing doors, to how things are placed in his home.  I think alot of this comes from anxiety and not being comfortable in his own skin due to sensory integration problems.  His low muscle tone also plays a role in him not feeling "safe."  His muscle tone has caused delays in fine motor, gross motor, eating(chewing, swallowing, feeding himself.)  It also makes him have low stamina, he tires out very very easily!

I think alot of times Seth is just confused.  He does not understand alot of abstract ideas.  He memorizes responses to common questions.  For example, every meal is "snack "and every time you ask what he would like to eat he says, "chicken and waffle."  No matter when something took place, today or last year...it's "yesterday." :)  He also has trouble learning and is behind when compared to typical kids his age.   

Seth loves lines and repetition.  He loves organization too!

  Seth has delays in fine motor, gross motor, self help skills, play skills and speech.  Not to mention the endless sleep issues!  All of this affects him every single day.  Autism is multi faceted.  It is not simple and affects most every aspect of development.  Seth is a trooper! He is the sweetest child and has more love than anyone I know.  Through it all, we will do everything to make his life easier and help him catch up with his peers.  If that doesn't happen, that's ok.  Because Seth is happy.  He struggles and has to work alot harder than most, but his little heart is so so very happy!!