Another trip to the beach is under our belts. Each year brings new challenges but also wonderful victories. Jacob changes so rapidly that things that may not have bothered him last year could potentially bother him this year and vice versa. You never know what his reaction is going to be to things.
He has once again amazed me. His courage, encourages me!
I want you to take a quick look at his picture from the bay last year and his picture from the bay this year.
2013
2014
I love to watch him grow and conquer his fears. You will never quit hearing that from me. His small steps are undeniably huge for him and it delights me more than life itself. With all the struggles and hardships we have it makes the victories that much more special.
The best part about this trip is that getting in the bay is not the only success he had. He really outdid himself this time!!! Before you see these next pictures I want you to understand that Jacob has never ridden ANY ride ANY where until this last fall at Caleb's birthday party (which was a total shock to everyone)
. Not only has he never ridden, he's never shown a desire to ride and always protests even if we tell him he doesn't have to ride. Not only did he ride some things at The Track but it was HIS idea...yes I just said that, yes I'm writing that because I'm still trying to believe it myself. Let me say it one more time for clarity...HE made the decision to ride some rides and for that there is no scale large enough to weigh how proud I am of him and probably no measuring device long enough to measure how much courage it took him. Ok I'll quit gloating and show you the pictures.
I'm actually proud of both of my boys for this. Caleb will hop on any ride any time but he knows that Jacob is typically scared and this was him during the swing ride. Constantly checking on his "brudder."
I know that each year we will see growth in both of our boys. It makes me have hope for Jacob and with each year I pray that Caleb continues to be Jacob's best friend.
We had a great time at the beach with or without Jacob's triumphs (of coarse, that made the trip better) but I will leave you with some other pics from our wonderful trip!
I had the chance to attend Field Day with Jacob today. I wasn't really sure what to expect from him. Sometimes he likes to participate and other times it's just lots of tears.
Today it was lots of tears, but not from Jacob, from me. I was thankful for my sunglasses!!!
When I first arrived, all the kids were sitting under the gazebo listening to instructions. Not so long ago I would have been able to spot Jacob immediately because he wasn't following directions or sitting with his class. Today, when I pulled up, It was just a sea of little 1st grade heads and no Jacob to be seen. I walked up to his teacher and she quietly pointed to Jacob, sitting so still with his classmates, listening to the directions. No one would've known what that scenario would have looked like for him just a short year ago.
The first station was tug of war. He was not enthused at all but he jumped in there and was a trooper! He was ready to be finished after the tug of war. Sweet boy didn't realize that we had five more stations to go.
The next few stations were uneventful. except for me pulling Jacob along trying to assist him with a few tasks.
The last station was my favorite and the most emotional for me. Jacob was faced with a relay race where you have to link arms with a team mate and hop down and around a cone. He was not interested in this at all and has a hard time when people hold him or link arms with him. Jacob's aid asked the girls if any of them wanted to be Jacob's partner and a few of them raised their hands begging to be Jacob's partner. The girl that landed the job was a sweet little girl named Kylie. I quietly stood by and watched as she took Jacob's hand and said to him "come on Jacob you can do it."
*Tears*
It came to be Jacob and Kylie's turn and they started off great. Then Jacob sat on the ground protesting. I was about to step in and assist when I saw Kylie kneel down and say "get up let's go." He got up and proceeded with his task at hand.
*Tears*
I started saying "go Jacob" like I normally do, then, all of a sudden Jacob's entire class was chanting his name. "Jacob, Jacob, Jacob, Jacob"
*Tears, tears and more tears*
He began smiling, proud of himself for completing the relay. When he got back to the starting line, the entire class yelled "YAY, JACOB!!"
*Niagra Falls!!*
I spent all morning listening to kids making fun of each other and making each other mad. I never once heard anyone say anything bad about Jacob. They all were rooting him on with each difficulty he faced.
Thank you to the teachers for looking out for him and thank you Jesus for placing sweet people in his life!!
I never thought I'd be having "The Talk" with my 7 year old. I'm not ready for this. It's too much. It's too soon!! Why can't he just stay little a little longer.
I'm not talking about "The Talk" that you are thinking about though. I'm talking about "The Talk" where I have to explain to Jacob that he's different than other kids. That he sometimes struggles more than other kids. That he has autism.
He told us the other day that he's not normal...that he's not like the other kids. We didn't know what to say. We want Jacob to know that he's different, in hopes that it helps him understand what he needs to do to overcome his obstacles in life. But, How do you tell your kid that he's not like the other kids at school? I wanted him to stay unaware as long as possible. Ignorance is bliss, right?
I know I can't really postpone telling him any longer though. The sooner I try to explain his differences the better off he will be. I don't want him to be confused or frustrated with himself and I'm hoping that explaining his diagnosis will help him.
I might as well explain it to Caleb while I'm at it. He is starting to notice that Jacob has more fears than he does. The other day I was trying to trim Jacob's toe nails. A task not for the faint at heart. He was screaming and crying and Caleb said so sweetly "Jacob it doesn't hurt, see, mommy did mine the other day!" As much as Caleb was trying to console him, it didn't work, and it never does. A small simple task turned into a screaming fit with Jacob pounding his fist into my back as I held him down to trim his toes. Him screaming "am I done" at the top of his lungs while violently kicking his feet.
By the end of the fiasco he and I were both crying. I put the clippers down where he could see I didn't have them anymore and then I sat next to him and held him close. I told him that I was sorry that it was so scary for him and that I just wanted to make sure his toe nails weren't cutting him. I tried my best to explain that what I was doing was for his own good. The anxiety is just too overwhelming for him to understand that concept. With a waiver of sadness in his voice he asked, "mommy, why does it scare me more than it scares other people?" I sat, bewildered at the question he had just asked. As my mind raced to find the words, my heart was broken. Why, oh why does my sweet boy have to struggle with life.
I went on to explain that other people are scared of other things. Daddy is scared of heights and I'm scared of spiders. He seemed to be satisfied with that answer, Thank you Jesus!! It was then that I realized that it was time, it's time to explain to him how different his mind is, but that we love him just the way he is.
Oh how I wish life was easier for him, but his life continues to teach me so much about mine.
Two days after Near His Heart, and a long two months planning for it, I get a cold and Erick and Jacob end up with a nasty stomach bug. On top of that it's the week that I had set aside to study for my real estate exam. That was obviously pushed back a week due to all the sickness. In the midst of a very frustrating and tiring week I experienced two moments that I will cherish forever.
Most of you may know that kids with autism don't reciprocate love very often. We've been blessed that Jacob does this sometimes, but not all the time. Or, it may come in a different way that doesn't seem like love at all. When it comes to Caleb, Jacob doesn't share his love. Which, is typical of most brothers I assume. In fact, at supper when Jacob says his blessings he says...
"Dear Jesus, thank you for mommy, daddy and RJ and for our food, Amen!!"
We have to continually remind him to add Caleb to his prayer and he does so, reluctantly.
This last Tuesday, after a long frustrating day, Jacob and Caleb were lying in their beds supposed to be going to sleep. I hear Caleb call out from his bed, "I love you Jacob" and a few moments later I heard something that was sweet music to my ears..."I love you too Caleb!" I do believe somewhere on this earth there were pigs flying. Erick and I made sure that we each heard what was going on upstairs.
After Jacob got the stomach bug and was on the couch all morning yesterday, I once again was greeted with another sweet moment. Caleb knew that Jacob wasn't feeling well so he got a few cars, went over to the couch and began to play with my sweet, lethargic Jacob. This wasn't very odd, considering that Caleb adores Jacob and likes to make him happy. Even so, it was a sweet sight.
They continued to play like this for a good 15 minutes and I enjoyed every minute of it. I went about my day trying to clean and straighten up and when I came back in, I found them like this...
I had to pinch myself to make sure that I was not dreaming...ok not really, but this moment IS rare. The fact that Caleb climbed up on the couch with Jacob is nothing to write home about. It's the fact that Jacob didn't push him off. Now, THAT, is nothing short of a miracle.
"But Mary treasured up all these things and pondered them in her heart"
Luke 2:19
I love when our own life moments make certain verses in the Bible come to life for us. When I was little and heard this verse I never understood the depth of it. Now that I'm a mom, I can understand the emotion that this one short little verse is talking about. Even through the chaos of life, we can find moments that make life sweet. Thank you Jesus for these moments!!
I woke up with this verse on my mind. Jacob woke me up just a few minutes before five and I surprisingly felt very refreshed. Refreshed is not normally how I feel anytime the number four is at the beginning of my clock, but for some reason I felt like a million bucks.
Jacob left for school, then Erick left shortly after for work. As Caleb and I sat, eating breakfast and listening to some music on my phone, I became overwhelmingly thankful for God's mercies that are new every morning. They are always there, but I don't always acknowledge them. I pulled out my Bible and looked up the scripture and to my surprise it was in Lamentations. I assumed it would have been in Psalms.
My whole reason for being thankful for this verse is because I fail so often and I'm thankful that his mercies are new every morning. I have the desire for everything I do and say to people be lifting them up and not tearing them down. We have the ability to either tear people down or build people up with our words and we seldom pay attention to the effect that our words have on people.
A gentle tongue is a tree of life, but perverseness in it breaks the spirit.
Proverbs 15:4
A soft answer turns away wrath, but a harsh word stirs up anger.
Proverbs 15:1
Whoever guards his mouth preserves his life; He who opens wide his lips comes to ruin
Proverbs 13:3
Let there be no filthiness nor foolish talk nor crude joking, which are out of place
but instead let there be thanksgiving.
Ephesians 5:4
Most of the time my words don't represent any of these previous verses. I have the desire to speak life into my husband and my children, but I fail them often. I have great intentions on building people up but I usually tear them down instead. I have great dreams in ministering to others but I find myself struggling to minister to the ones I live with, which they should always come first. I relate so well to Paul when he writes the following,
I know that nothing good lives in me,
that is, in my sinful nature.
For I have the desire
to do what is good,
but I cannot carry it out.
For what I do is not the good I want to do;
No, the evil I do not want to do, this I keep on doing.
Romans 7:18 & 19
I'm not always going to get it right, and I'll fail again today at some point. But I can strive to speak life with my words and when I do fail, I know that his mercies are new every morning!!
I was awoken this morning by little feet and the hall light being turned on. I looked at my clock and it read 4:36 a.m.. My first thought was "ugh, it's before 5" my second thought was "Yay, he slept 16 minutes longer than yesterday!!"
I've always heard about sleep problems that other kids with autism have. Erick and I had always said that we were blessed in that area because Jacob had always been a fantastic sleeper. However, people that over hear the conversations I've had lately with my parents and my friends about Jacob's sleeping habits probably think that I'm talking about an infant, and rightfully so. In all honesty though, I'd rather be dealing with infant sleep issues right now. I feel like I'd be more adequately prepared for a sleepless baby.
Jacob woke up at 4:58 the other morning. Erick and I were excited because we actually got to sleep "late" that morning. As we lay in bed Erick excitedly said "Is it sad that I'm excited that I got to sleep as late as 5 a.m.?" I began to laugh as I answered him, "Yes, but I'm excited too!"
For the past three in a half months Jacob has been getting up before 5 a.m. It started off him getting up at 4:30 and has gotten earlier and earlier. The night that surpassed all other nights is the night that he woke up at 1:45 and never went back to sleep, even after I gave him benadryl. I made another appointment with his doctor after that one! The weirdest thing about all of it, is that he doesn't seem sleepy during the day either. His behavior has slowly gotten worse and he's rocking more and more and is getting irritable very easily.
We've exhausted every possibility of why he's getting up. We've adjusted his meds, gotten him a memory foam mattress topper, given him a night light, made sure he was pottied up before bed, given him melatonin and benedryl. We just started giving him a stronger sleep aid at night and he's back to getting up at 4:30, which is a huge difference than the two and three o'clock awakenings. However, his sleep meds are hanging with him throughout the day and he can hardly keep his eyes open. He's been extremely irritable in the mornings and it's been a big struggle just to get him dressed to go to school.
I'm starting to feel like I'm failing him. I'm running ragged trying to figure out what's going on in his little mind and body but I continue to watch him struggle and, in my negative mind, possibly deteriorating. This whole ordeal is consuming my mind. I have forgotten many important things lately. Possibly from lack of sleep or possibly from only being concerned with this one matter...maybe it's a little of both. I've never known sleep deprivation more than I know it now. My heart tells me I love Jacob immensely but my mind tells me to be annoyed with him and just distance myself from him. It's an emotional struggle for me. I feel love, guilt, shame, joy, hope, hate. It's all wrapped up in one little package and it's hard to have one without the other. It's the one of many times that Jacob needs positive attention and that's the one thing that is so hard to give.
A concerned friend asked me the other day how Erick and I were doing through all of this. It was a nice question to ask because with any type of sleep deprivation, being selfless and loving is not at the forefront of your mind and your relationships start to suffer. I laughed and replied, "It's been great, we're too exhausted to argue." Although that may be true, it reminded me of how well Erick and I work together in the face of disaster. Maybe you think disaster is a strong word, but if you'd lived in my shoes the past three in a half months you would see that I was being gracious with my choice of words.
In the midst of what could have turned into a top story on the news entitled "Mom and dad lock their two boys in their closets then slept for 3 days straight," I can think of a few positive things that have come out of the chaos...
Like I said previously, I was reminded that Erick and I work well together. We've traded off sleep times and frustrating tasks. We've laughed when we've wanted to scream and we've started doing something together that Erick always wanted...we drink coffee together now.
We have spent more time around the breakfast table as a family lately. If you're going to get up that early, you might as well enjoy it. You can't enjoy an early morning better than with a southern breakfast of bacon, eggs, biscuits and grits.
I can fully understand other autism moms when they tell me about their kids sleeping issues. You can always minister to others better when you've been through it yourself.
This has been the busiest time ever for our family. Not only has Jacob not been sleeping good but I'm trying to be the super mom while getting my real estate license and then on top of that plan for Near His Heart (the dinner for families of special needs kids). I've never been more driven to plan for Near His Heart. I know it's always been needed but now, in the midst of lack of sleep, I realize what other special needs families face on a consistent basis. I realize even more, now, how much these families need a night of rest, encouragement and revitalization.
Ok, now I need to go finish my coffee, then take a nap!!
Let me just start off by saying that this is not a post to complain about my life with Jacob. To be able to share with you what's on my heart, I have to give you a little insight into my daily frustrations and then I will make my point...
We have good days and bad days with Jacob. Some days he seems very aware of everything around him, he's talking more and smiling more and seems to be, in his own way, independent. Then there are the bad days...
For the last 3 months Jacob has consistently been waking up between 3:30 and 4:30 a.m.. He hasn't slept passed 4:30 in I don't know how long. He won't go back to sleep for anything. We've tried melatonin, Benedryl and other natural remedies and nothing is working. Erick and I are sleep deprived but we're trying to stay calm and positive. It's HARD!!!!
Jacob obsesses over things. Lately he continues to open and shut doors throughout the house constantly, it drives us crazy! He gets hung up on words and won't quit saying them. Right now he keeps saying "shut-up" and we can't get him to stop. He's been rocking again all the time and that noise that it makes when he's rocking in the recliner is starting to grate on my nerves. He's been obsessing over a picture that we have of him and our neighbor RJ. He's Jacob's biggest buddy, which is really sweet. However, he carries this picture around and talks to it, sleeps with it and completely obsesses over it. All these things are cute for the first hour and then they are annoying.
Jacob has been demanding stuff lately. Screaming at me, demanding me to get him things. He's been kicking and screaming when he doesn't get his way. He's also been slightly abusive to me and Caleb.
Jacob has been resisting everything!! Going to the bathroom, eating, getting dressed, getting on the bus, going to sleep or staying asleep I should say...these are just to name a few.
Many times, now, I do get some love in return. Jacob will hug me and ask me to kiss his cheek and he says "I love you mom." I remember not too long ago that I didn't ever get anything in return. Those were the hard days. Giving everything you had to offer to your child, them resisting it all and then getting nothing in return is a hard pill to swallow.
Most of the time I have to feed Jacob. Not because he can't physically feed himself but I have to feed him so that he at least gets something healthy in his body.
He's 7 1/2 years old and I assume that other 7 1/2 year olds bathe themselves. Jacob doesn't, I bathe him just like I did when he was 2 years old. I brush his teeth and I give him his medicine. Most 7 1/2 year olds can probably dress themselves. Jacob's getting close but I still have to dress him and put his shoes on. Most 7 1/2 year old probably don't need any assistants in the bathroom, again, not the case for Jacob.
I know some of you are reading this and thinking that it sounds like raising your typical child...it's not anything like raising your typical child. I have a typical child so I can say with full confidence that it's NOTHING like raising a typical child. Imagine the thing that annoys you about your kid the most, multiply it by 10 and then add it to every single second of every single day and then imagine no type of discipline strategy working.
This is just the tip of the iceberg compared to some people. Some people have children that are way more severe than Jacob. Some people are going on YEARS of sleep deprivation. Some of them are bathing and dressing their 30 year old and spoon feeding them. Some people have no relationship with their child. At least Jacob does play and laugh with us. Some people have medical bills stacked to the ceiling of things that they can't pay for. Some people are raising a child with multiple disabilities, or multiple children with disabilities. How do they do it? I sit here and think that Erick and I have it bad, and compared to most, we do. But compared to many other's? We have it easy. How do they do it? How do they live every single day and not lose their minds? I've only had 3 months of sleep deprivation but what about the people that have 13 year olds that don't ever sleep. I'm talking about years upon years of not getting the correct sleep.
I've seen/heard about 5 stories in the last year about mother's who have murdered their sons that have autism. Most of these little boys look to be around the same age as Jacob. Most people probably think they are horrible horrible people and while I tend to lean that way, I can't help but think how easy it would be to go down that road. If I didn't have Christ, my husband, my parents, my church and my friends to lean on, then I would probably go down that road too. I can see where it would be easy if I didn't have the support that I have.
Special needs is lonely, draining and discouraging. I woke up this morning, heavy hearted for the families that have it worse than me and that have been at it longer than me. I want them to have joy, hope and peace. I know that Near His Heart is only one night, but it's something that I can do to give these families a brief moment of rest and enjoyment. Something so simple can go such a long way when you are struggling to find joy.
Mom's are already too hard on themselves. Mom's with children with special needs are even worse on themselves. The looks and the stares that we get from the outside world are the worst because they have no idea what it's like to walk in our shoes. Today, I'm praying for all the mom's out there with special needs children. I pray that they can find comfort, that they can find hope and peace. I wish they could all come to Near His Heart!! If Near His Heart only reaches 1 person then it is totally worth it to me. To give one mom hope and peace would mean the world to me!
