Victory's

Life in this house is not at all like I thought it would be a year ago. God has blessed us with a continual growth and improvement in Jacob's behavior. Last night we were actually able to go trick or treating with him and not only did he tolerate it but he was begging to go and loved every minute of it. It's these simple moments that I take comfort in. In the past few months he's done new things that once would have sent him into a whirlwind of emotions.
      Last month he was able to ride the little train at the zoo with no meltdowns or anxieties and he was able to enjoy a train ride with his cousins. In the past years, going to a pumpkin patch was fun but most of the time you have to ride on a hay ride to get to the pumpkins. Here's how that would go down, we'd talk about the hay ride and Jacob would say he'd want to ride then when that time came he would act like we were about to chop his head off with an ax. So, we would end up following the hay ride, walking behind and it was very awkward. This past week, I'm happy to say, Jacob was begging me to get on the hay ride to go get his pumpkin and reluctantly I bought the ticket. As we were walking over to get on the trailer the negativity started to over take my thoughts and I knew that this was going to be another throw down. Another embarrassment, another time when I have to ignore the stares and the ugly remarks. To my uttermost surprise, Jacob ran onto the trailer!!! He was the first one on and he said "mom, we're going to get a pumpkin." I felt so blessed in that moment.
       He's also been taking his medicine with minimal fights. I used to have to hold him down and put him in a headlock and force the medicine in his mouth and scream "swallow." He's taking his meds like a pro now!! He's come such a long way in the past year!! I can't wait to see what the next year holds for us.

This Moment Will Pass

I copied this from another blog called "Daydreams from the Spectrum." I thought it was very well written  and I related to it oh so well. Hope this encourages you!!

This moment will pass.

Truly believing those words will get you through a lot in life. I first learned the importance of this with my marriage. The best advice I have to offer newly married couples, other than to pick your battles- is that you will not be in love every day. But you will come back around, so don’t pack your bags quite yet. We are moody creatures, and perspective can change easily.

This advice took on a whole new meaning while I was learning to accept my daughter’s Autism. The idea that this struggle may never pass was too much to bear. And it IS a struggle. So everything comes down to that ever changing perspective. Knowing it will change, even when it feels impossible, has gotten me through the darkest moments.

Some days are harder than others. We were married, without children, for eleven years. We tried for over three of those years to have a baby, and we probably won’t be able to have any more. This is not what we imagined family life to be. It could be worse, and there are no guarantees in life- but we are talking about perspective, and these facts are important.

There are days when I make the mistake of thinking about what Teghan would be like if she had typical social skills. I think about what we would be doing together if she were like other four year old girls. I wonder what we would talk about if she could talk. I imagine a world where she understood pretend play, or could follow storylines of a book or a movie. 

Sometimes I think about the things I will never watch her experience. How she will never drive a car, have a career, get married, or have children. I worry that no one will care about her when we are gone.

Sometimes I make the mistake of letting other people affect me. The stranger who judges me when my daughter attempts to take a drink from their cup.  The in-laws who believe spanking is the cure for Autism. The coworker who tells me I am lucky that my child can’t speak, because kids who talk too much are so annoying. (Coworkers who talk too much are annoying.)

Sometimes Teghan seems so far away from the rest of us. I might feel as if I know her when she throws herself to the ground in a rage, because I am the first to suspect that there must be a missing piece to some group of three she has created. But I don’t understand it at all. I learned from trial and error . I have no actual understanding of why she chose to group together three random pieces of paper, or why the brief misplacement of one results in the neighbors thinking our child has been stabbed.

And I think about how I got to this place. Why I even wanted children. If I am living the kind of life that a past, happier me, would have found desirable in any way.

But, this moment will pass.

And thank God, it does pass. The next morning she will climb up onto my lap and want to snuggle with me for as long as I will have her. Tomorrow she will say something she has never said before, or do something I didn’t know she could do. And I will think she is the most amazing child in the whole world. I will think about how sweet she is. I will be hopeful for all of her potential. I will feel lucky, because I almost missed this whole experience by not having children. I will be happy.

She is worth every struggle. I may not feel it every minute of every day, but I will always know that the moment is coming when I will feel that way again.

Trauma

No one quite understands what daily life with a special needs child is like. All of life's normal struggles are 10 times harder when you're child has special needs. Jacob hurt his toe this morning and it needs to be cleaned and doctored. The sad part is that I can't physically doctor his foot without some form of help. Stumping toes is a typical childhood experience for normal kids but it's a trauma when it comes to autism. So, Super Parents to the rescue! I'm so thankful to my parents who will come and help even when it seems like something silly. I am not physically strong enough to hold Jacob down, clean his toe and put medicine and a band aid on it. I'm seriously worried at the fact that he's getting stronger than me. Things that were once hard are becoming impossible. Take medicine for instance, I literally have to get Jacob in a headlock to get the medicine in his mouth and then I have to convince him to swallow. I'm considering talking to a chiropractor about coming in every few months to make sure that my body is aligned and healthy. I pray all the time that God would just make me ripped with a nice 6 pack. It really would benefit my parenting skills...it's not for selfish reasons at all, haha. I really do pray that God will give me the patience and mental strength to deal with everyday life. I tend to get very annoyed very fast with all of Jacob's resistance to things like this. However, I'm reminded that I can't do it alone and that keeps me humble.

Progress

As I was at the beach with no kids I couldn't help but watch other families. Families who weren't plagued by the awfulness of special needs. I couldn't help but wonder what our lives would be like if Jacob didn't have autism. I tell myself all the time to not let my thoughts go there because it only brings sadness and sorrow, but sometimes you just can't get your thoughts away from there. I wondered what it would be like to take Jacob on a vacation and not have to search hard for things that wouldn't frighten him or cause him anxiety. I envied families as they rode rides, ate ice cream and walked down the boardwalk unhindered by their normalcy. After getting home, I dove right back into the life of special needs that God has given me by attending a meeting about organizing a banquet for families that have special needs children. At the meeting I was reminded why God has placed me in this, mentioned before, "plagued" life. It's to encourage and uplift others who are on the same road I'm on. The only thing I have to offer is grace, love and hope from the God that has offered it to me. I hope that by my suffering I can offer peace to someone else in need of a Mighty God. The day following the meeting I hit the road again taking Jacob to the doctor to help solve some mysteries that have been going on with him. Going to the doctor with him is always an adventure. I had no clue we'd end up drawing blood, going to the eye doctor and to the outpatient services at the hospital. Things like these are typically triggers for Jacob and send him into a whirlwind of emotions. On days like this typically know that my back is going to be hurting and I'll be exhausted. But, oddly enough, he was a big trooper and we went through the day with only minor setbacks. I have to say, he sure is growing up and I am reminded that everyday he is making progress and is taking a step a little more closer to normalcy. I just have to remind myself to keep putting one foot in front of the other.

One More Day

I love being on vacation! However, the more kids I see the more I miss my little men. In fact, yesterday as we sat and listened to a timeshare presentation the guy started talking about kids playing on the beach. I literally pictured my kids on the beach and teared up...I realized then I had completely lost mind!! I guess when you have kids you just lose your mind, cause I lose my mind when I'm with them and apparently I'm losing my mind being away from them. We've had a very fun and rejuvenating time and have gotten to talk about many things on this trip. Sometimes I get caught up in my day to day activities and through the summer my activity is mostly playing referee between my two children. Or it's probably more like playing body guard for my youngest one. I seem to lose a sense of myself when all I do is referee kids. It's been nice to get away and have my own thoughts and feelings back. I'm going to enjoy this last day of vacation and then my mind is directly going back to missing my kids.

Chick Fil A

I'm so discouraged today, in fact I've cried about this today. We've messed up big time and have created an even bigger chasm between the people that God created. If God does frown on his people, I think today would be a day that he is frowning. Christians all around our nation are gathering at Chick Fil A to stand up for what they think is right. I seem to view it so differently. In my mind I feel like we've shown up at these restaurants with torches, ready to burn homosexuals at the stake. It looks like hate to me. Let me first begin with saying that I completely agree with the standards that Chick Fil A upholds and the words  that Dan Cathy spoke were great and I appreciate a business that upholds morals and values.However, I disagree with the fact that we've jumped on this hate wagon and all it's doing is creating a bigger divide between us. The Bible says in John 13:35 "So now I am giving you a new commandment: LOVE each other. Just as I have loved you, you should love each other. Your love for one another will prove to the world that you are my disciples." In my opinion, going to Chick Fil A is sending the wrong message. I might as well wear a shirt that says "I hate gay people" in big huge letters. Christ came to die for our sins. He came so that we would have love, grace and mercy. For some reason we've gotten into the mentality that we (christians) are better than everyone else. We may say that we don't think that but our actions are speaking differently. Isaiah 64:6 says "But we are all like an unclean thing, and even our righteous acts are like filthy rags." So, should we remain silent? No, the Bible tells us plainly in the verses below. I feel like we've missed the mark on this one. How can we not see it?  

Bless those who persecute you; bless and do not curse them. Rejoice with those who rejoice, weep with those who weep. Live in harmony with one another. Do not be haughty, but associate with the lowly. Never be wise in your own sight. Repay no one evil for evil, but give thought to do what is honorable in the sight of all. If possible, so far as it depends on you, live peaceably with all. Beloved, never avenge yourselves, but leave it to the wrath of God, for it is written, "Vengeance is mine, I will repay, says the Lord." To the contrary, "if your enemy is hungry, feed him; if he is thirsty, give him something to drink; for by so doing you will heap burning coals on his head." Do not be overcome by evil, but overcome evil with good. (Romans 12:14-21)

Myrtle Beach

Erick and I are preparing to leave to go on a couples get away and it seems that the closer we get to leaving the more excited I am, but I'm also starting to panic a little. I've never been away from either of my children for this long and although I need a break, I have a feeling that I'm going to miss them terribly. How is it that the one thing we feel the need to get away from is the exact thing that makes us want to come home? It's the strangest feeling I've ever known. Some days I wish that life was like the story of Benjamin Button. I wish we'd start off old and wise so we would know how to appreciate things when we grow younger. It seems the older I get the more I miss certain aspects of my younger days. I know that one day I will miss my children being young, cute and not so innocent!! Right now it seems like the days are long and full of whining and fussing. People tell me that one day I will wish I could come back to this time and maybe I will, but right now I'm not sure why. I guess it's like childbirth. The older your kids get the harder it is to remember the pain of childbirth. So, the older your kids get the harder it is to remember how time consuming they are and the fact that when they whine all day all you want to do is lock yourself in a closet and let them fin for themselves. So, why in the world do I feel panicky? Like they say, the bond between a mother and child is not explainable. I can't wait to get away from them tomorrow but I'm already counting down the days till I can see them again...I love them, what can I say? 

Backpacks and Robots

A few days ago Jacob and I sat down at the computer and I let him pick out his backpack and lunchbox pattern. He quickly chose the robots and thought that he could have these things immediately. I tried to explain to him that they'd be here in a few days but I'm not sure that he understood cause he just kept asking for them. A day or two passed and he seemed to have forgotten about them. I was hoping he'd still be excited when they came in the mail. He was napping yesterday when his lunchbox was delivered so I unwrapped it and set it on the counter all nice and neat so he'd see it when he woke up. After his nap he came downstairs and I quietly called his name while pointing to the lunchbox. As soon as he saw it his face lit with excitement and he jumped up and ran to grab it. He said "THANKS!!! I like it!!!!! My eyes welled up with tears. He probably sat for 30 minutes just checking it out and playing with it. I wish I knew what he thought about seeing it on the computer screen and then it showing up at the house a few days later. Hopefully one day he can explain, but for now, I think his smile says it all!! 

The Change

If you had told me 6 years ago that I would one day have the desire to work with special needs kids, I probably would've laughed in your face. It's not because I disliked them, it's more of I didn't know how to act around them, what to say and how to be. The past 6 years of my life has changed me. When I see a special needs child now, all I want to do is go talk to them and hopefully, somehow, make their life a little better. I guess that's what being a special needs mom does to you. It seems to give you compassion for people that are different.
      I was knocked off my feet when I found out Jacob had autism. I felt like all I had ever hoped for was being torn out of my arms slowly by some dreadful monster. All I could do was sit and watch as my sweet son struggled with life. I went through bouts of hating God, hating people who had typical kids and blaming myself for my son's struggles. It wasn't a very pretty time for me and there are still some days that I deal with these emotions. I call it my "grieving" day. I don't think the grieving process ever goes away, you just learn to deal with it and move on.
      Jacob's taught me more about life and love than anyone else could. I guess the main thing he's taught me is to look at the simple things in life. He doesn't worry what others think of him, he just is who he is and that makes me so happy. It reminds me of the "Friends" episode where Phoebe is running through the park with Rachel. Phoebe looks ridiculous in the way she runs with her arms flapping all over the place and Rachel's embarrassed to be seen with her. At the end of the episode Rachel realizes that it's more fun to run freely like Phoebe does and not get so worried about what others think and so they sprint off together looking ridiculous, disregarding all the crazy stares. I feel like I'm watching me and Jacob when I watch that episode, probably because Jacob actually runs like that, but mainly because he seems so free to be himself. I wish I didn't have the "what does everyone think of me" mentality. I wish I felt free to be me.
      He's also taught me that just because life doesn't turn out like your picture perfect dream when you were little, doesn't mean that it's not wonderful. My life is absolutely nothing like I thought it would be, or should be, but it's still great. Is it hard? Heck yeah, But I'd rather have Jacob with autism than not have him at all.
      He's also given me the opportunity to know and understand completely what unconditional love is all about. As a little girl you think unconditional love is beautiful and lovely. I've come to realize that it's not like that at all! Unconditional love is hard, frustrating and makes you more mad than you ever thought you could be. I've never known anyone else who can make my blood boil and make life sugary sweet all in a matter of seconds.
      I know that Jacob will continue to teach me things about myself and the life that God has given me. I'm learning to roll with the punches and live life to the fullest with one of the most precious kids I've ever met!
     

My Wish

Around the time that Jacob was born the song "My Wish" was released. I loved the song and naturally I thought of Jacob every time I heard it. Those words have become common thoughts and worries for Jacob. So, I've deemed it my song for him. I want so much for him! I don't ever want him to be discouraged because he's "different." I pray God gives him strength to endure laughter, stares, awkward moments and silence. I wish I could keep him in a bubble forever so he'd never experience the pain that others can bring him. However, I can't do that so I pray for strength and endurance for him! Love my sweet Jacob!!


I hope the days come easy and the moments pass slow,
And each road leads you where you want to go,
And if you're faced with a choice, and you have to choose,
I hope you choose the one that means the most to you,
And if one door opens to another door closed,
I hope you keep on walkin' till you find the window,
And if it's cold outside, show the world the warmth of your smile,

But more than anything, more than anything,
My wish, for you, is that this life becomes all that you want it to,
Your dreams stay big, your worries stay small,
You never need to carry more than you can hold,
And while you're out there getting where you're getting to,
I hope you know somebody loves you, and wants the same things too,
Yeah, this, is my wish.

I hope you never look back, but ya never forget,
All the ones who love you, in the place you left,
I hope you always forgive, and you never regret,
And you help somebody every chance you get
Oh, you find God's grace in every mistake
And always give more than you take.

But more than anything, more than anything,
My wish, for you, is that this life becomes all that you want it to,
Your dreams stay big, your worries stay small,
You never need to carry more than you can hold,
And while you're out there getting where you're getting to,
I hope you know somebody loves you, and wants the same things too,
Yeah, this, is my wish.

The Little Things

We've just been back from the beach a few days and Jacob's already asked to go back. I am still amazed that just last year we had to force him onto the sand and watch as he struggled to feel comfortable. Having a child with special needs makes you appreciate the little things in life. With Caleb being a typically developing kid I'm aware of this even more. Caleb's accomplished tasks make me happy but Jacob's accomplished tasks move me, excite me and bring a tear to my eye. In some ways I feel like I've been blessed to be able to feel that proud of my kid!! I know that all parents are proud of their kids but having a special needs child and a typical child I can say with complete confidence that the proud feeling that I have for Jacob is stronger than that for Caleb. I guess it's because Caleb's accomplishments are just natural at this point and Jacob's had to work hard on overcoming his inhibitions. I know this may sound cold towards Caleb but I know that in a few years this will probably all change and I will be overly exuberant about Caleb's undertakings. For now I remain overly excited about the accomplishments of Jacob and that feeling will probably never change!

Where am I?

Most of the time I feel so cut off from the world. People are talking and having conversations about what's going on around them in the world and I have nothing to add to the conversation. Sometimes all my mind thinks about is autism. What causes it, how to cure it, what would help Jacob improve, how can I get Jacob to eat new things and how can I help him overcome his fears. It makes me feel very isolated from normal conversations. Having a child with autism already ostracizes me enough, why does my own brain have to do it too!  Every time I open my mouth I feel this voice in my head saying "quit talking about autism, everyone's tired of it." Even though I hear this voice it seems I can't stop! My mind is saturated in it. When I'm not thinking about autism it seems like I'm only thinking about household chores and what to cook for supper. I'm assuming that one day I'll feel like me again and that I will join society again and feel normal. I keep telling myself that autism is not my life but the more and more I live, the more I realize that it is. I've come to terms with it, now I just need to learn how to live without it consuming every thought and moment of each day. I hope one day I can join in in regular conversations like a normal human being.

Welcome To Holland

Someone posted this on the local Autism Support Group Facebook page and I thought it was such a great way to describe what being a special needs parent really feels like. Sometimes it is harder than this story portrays but nonetheless it's a good story. So...enjoy!!


WELCOME TO HOLLAND
by Emily Pearl 

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel - It's like this .....
When you are going to have a baby it's like planning a fabulous vacation trip - to Italy say. You buy a bunch of guide books and make wonderful plans. The coliseums, the Michelangelo David, the gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting. 

After months of eager anticipation the day finally arrives. You pack your bags and off you go. Several hours later the plane lands. The stewardess comes in and says "welcome to Holland". "Holland!!!","what do you mean, Holland? I signed up for Italy! I'm supposed to be in Italy! all my life I've dreamed of going to Italy"

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible disgusting place full of pestilence, famine and disease. It's just a different place. So you must go out and buy new guide books and you will learn a whole new language, and meet a whole new group of lovely people you would never have met otherwise.

It's just a different place. It's slower than Italy, less flashy than Italy but after you have been there for a while and you catch your breath, you look around and you begin to notice that Holland has Tulips, Holland even has Rembrandt's.

But everyone you know is busy coming and going from Italy and they're all bragging about what a wonderful time they had there. The rest of your life you will say "Yes, that's where I was supposed to go. That's what I had planned".

The pain of that will never go away, because the loss of that dream is a significant loss. But if you spend your whole life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.

Beach Woes

We're leaving for the beach in a few days and I'm starting to reminisce the previous summers leading up to this one. The summer's that Jacob was scared of the beach and everything pertaining to it. We missed out on a lot of beach fun because of his anxiety about the sand and the water. Last spring I was introduced to the movie "Temple Grandin" and it changed my outlook on Jacob's anxiety. Temple was a girl with autism and her story is remarkable, but what I learned so much from her story wasn't about her, it was about her mom and her mom's perseverance to make sure Temple was able to experience the things that every child experiences and loves. She talked about how her mom encouraged (aka forced) her to do things that she was fearful of. Temple eventually was so grateful to her mom for forcing her to do things she wasn't comfortable with. Now she has taught herself to try things even if they scare her because she might end up liking them or at least be able to tolerate them. So last spring, against everything that I had been doing with Jacob, I decided to force him onto the beach. I remember my dad carrying him across the sand, Jacob kicking and screaming the whole way, me and my mom crying and Caleb just watching as if we were strangling his brother. I debated the whole way whether or not we were doing the right thing because it felt like we were just torturing my 4 year old innocent son for no reason. It was so difficult to see him be so fearful of something that most kids love. We spent about 30 minutes out in the sand trying to get Jacob comfortable by building sandcastles like "Max and Ruby" (Jacob's favorite cartoon). He eventually quit screaming long enough to look at the sandcastle and smile for a moment. The next morning we woke up and Jacob said "I go make sandcastle's like Max Ruby." I was amazed!! So off we went back to the beach and although we had to carry him across the sand and place him on a towel so the sand wouldn't touch him, he had fun. We went home from that trip in hopes that Jacob would do even better the next time and a week later he was begging to go back!! So, my parents and I made an impromptu decision to take the boys back to the beach and we left 3 hours later. Jacob, without hesitation ran onto the beach like he'd never had a fear about it before. I couldn't believe my eyes and honestly could barely watch him enjoy it from the tears welling up inside. This year as we prepare for the beach I've had to make a calendar so he can visually count down the days till we go so he'll quit asking me when we're leaving. I never dreamed he would be begging me to take him to the beach!! So, from now on I've promised myself that I will make him endure things at least once so that maybe, just maybe, he'll learn to overcome his fears and learn to love it!!

A Free Day

I just woke up at 7 a.m.!! This never happens in our household because Jacob's normally awake and in our bed repetitively asking for things by 5:15. Thank God for grandparents that offer to let him spend the night when I need a break! I get overjoyed when I wake up at 7 a.m. and I realize that I have a day free of the autism struggles. It's not that I want a day free from Jacob though, just autism. It's a day for me to rest, recoup, refocus, and FINALLY clean my house!!! I feel like having a free day from Jacob allows me to get my life back in order so I can be a better mom to him.  There's days that I wake up and imagine to myself what Jacob would be like without autism. He's such a sweet and funny little boy but what would he be like without autism. For one day I'd like to witness him having fun with no hindrances or hesitations, eat whatever he wants and not have sensory or diet issues.  I wonder how different he would be. Nevertheless, he is who he is and I love him for that. He's taught me more about life than anyone could and more than he'll ever know!

My Disclaimer

So, I'm writing this as a disclaimer. On this site I'm going to be very open and honest. Half the stuff I might say on here may sound harsh and unfair or downright mean but this is a website for me. It's a place I can come and rant without judgement so that other special needs parents may be encouraged. It doesn't mean I don't love my child dearly and it doesn't mean that I won't care for him and give him everything that's best for him. But life with a special needs child is anything but pretty and if I'm purely honest it's just plain hard! I've written the words to a song below that reminds me of my life with my sweet, loving, hard headed, annoying, loud, disruptive son. Love you Jacob!!

Life ain't always beautiful
Sometimes it's just plain hard
Life can knock you down, it can break your heart

Life ain't always beautiful
You think you're on your way
And it's just a dead end road at the end of the day

But the struggles makes you stronger
And the changes make you wise
And happiness has its own way of takin' it sweet time

No,life aint always beautiful
Tears will fall sometimes
Life aint always beautiful
But it's a beautiful ride