Monday, October 26, 2015
I went grocery shopping today and while I loaded up my cart with a bounty of produce, I couldn’t help but think about my two sensory sensitive boys that refuse to eat all vegetables. I shamefully thought about the years that have passed and how I still can’t get them to eat these healthy foods.
Outside of a forced nibble on a carrot, some hidden spinach in a few smoothies or juices with combined vegetable juice, my boys have victoriously won the battle of refusing to eat vegetables.
It makes me feel like a failure as a mother. Though realistically I know that most typical mothers aren’t dealing with strong sensory issues in their kids and there’s the obvious realization that I’ve had bigger battles to win over the years, I still feel disappointment in myself over what I’ve failed to accomplish.
Now my youngest is having stomach issues. Constipation and pain most days. Knowing that stomach issues are associated with autism spectrum disorders, I’ve started the process of working with our doctor to figure out how to help him.
One day when his stomach was hurting bad, he admitted Googling WebMD to research his stomach issues. It was there that he learned that he needed to drink coconut water and eat rice and bananas.
My 10 year old went to WebMD!!!!
Every night he asks for prayers for the doctors to figure out what is wrong with his stomach and that his stomach will feel better soon.
But I still can’t get him to eat those leafy greens.
On the flip side, my middle son asks to make salads as a midday snack.
I just don’t know what to do. It’s hard to sneak this produce into their meals since they know that there’s a taste, color or texture difference they object to.
I can’t force them, that leads to them throwing up onto their plate.
I keep hoping that making the healthy foods available and asking them to try, that in time they will start to give these foods a chance, maybe even develop a palate for them. But so far, that’s not working either.
So tell me moms and dads of sensory challenged kids, what has worked for you?
Thursday, September 17, 2015
Then on Thursday night, while having our boys get ready for bed, our oldest son became dizzy and started sweating all over. His color didn’t look good and he complained that he was having trouble breathing as he panted for breaths while lying on the floor.
My husband and I looked at one another, not sure what we should do, he was getting air, but was breathing too fast. We’re fortunate that we have neighbors that work in the medical field so we quickly called them over to check out our son to see if we needed to take him to the ER.
It’s hard in these moments to not think the worse... what if his body is reacting to his medications?
I’m not naive, I know these meds come at a price, the risk of serious side effects will always remain, especially the longer he remains on them. A part of me is always afraid that one day we will have to face this. I consider this every single week when I fill his pill box with so many medications.
It makes my gut ache.
Our neighbors arrived and quickly went through vital signs and covered all the current variables our son has. Are his Lithium levels becoming toxic due to the heat wave? Are his compromised kidneys (due to reflux) struggling? Is his thyroid off? Is he eating and drinking enough in the day? Is this an anxiety attack triggered by stress?
We monitored his symptoms until he recovered and decided to keep a close watch on him at home. Our neighbor, an ER nurse, and her paramedic husband thought it was safe to keep him home, thinking that it might have been a panic attack.
The next day our son woke up a little extra tired but has been fine since. His psychiatrist had no explanation for the episode. We spent the next few days trying to remove stress and help with his depression by giving him positive things to focus on. By the weekend he was smiling again and doing fine.
I share this story not to scare parents from trying medications, we still acknowledge the importance of treating our son with medication, but I share this for those like me who always carry this weight of concern. I don’t think we ever come to peace with the decision to medicate, or live without fear of consequences. It’s one of those unfortunate decisions where you choose the lesser of two evils.
Yes, I wish my son never had to take medications, but at the same time, living without them is not an option right now. I can’t let my fear of possible side effects prevent our son from getting the treatment he needs to thrive.
Over any other treatment option we tried, my son feels that medication was the only thing that has made a difference. I am encouraged and thankful that my son can so clearly communicate this to us and have reminded myself of this when I feel my own anxiety about him taking so much medication.
As time passes, the longer our child is stable, we don’t have the daily reminder of why he has to take so many medications. Like the pain of childbirth, our experiences of our raging child wanting to hurt himself becomes foggy and the constant mood swings becomes a thing of the past.
That’s the challenge with invisible illnesses, the evidence of the illness can be hidden by the treatment. That’s why so many people relapse when they quit their medications without the direction of their doctor. They feel better and no longer see the need for their medication. Unfortunately for some, upon quitting their meds, the symptoms quickly return and in some cases it leads to suicide.
As a mom with a stable child, I continue to live with a degree of anxiety about my child taking medication. Should he continue to take so much? Can we reduce his meds or even wean them off someday? Will he need it for the rest of his life? How much is too much? Will the side effects harm him? If we remove them too soon will the results be devastating?
I write this post today for the mama who is struggling as she sits at the counter with bottles of medications, counting out the pills for the week.
I’m there with you, I feel it too.
You’re not alone.
Saturday, August 15, 2015
This is the last weekend of Summer and over the previous weeks I have seen a huge increase in my youngest son’s anxiety. I know he hates school and it triggers a lot of stress and anxiety but what I didn’t expect was how it would reveal itself.
Instead of fretting about school, he becomes hyper-focused on his new fear of “creepy bugs” and will even refuse to swim at the community pool to avoid their possible appearance in the water. Right now it’s past 11 pm at night and he’s still trying to go to sleep after my numerous attempts to calm him since he’s scared because the house is “too quiet and dark.” A few days ago he was very anxious and upset about the possibility of the sun exploding years from now and hurting not his own children, but his children’s children.
A few weeks ago I had to hold him down on the floor in a Target when we tried to buy school supplies. He became so upset over the whole event that he began kicking surrounding objects and unfortunately a stranger’s shopping cart.
As much as we are prepared for the start of school, I can only do so much to help my son with this challenging transition. Last year he faced multiple trips to the office and a suspension as he tried to adjust to school. This year I’m trying to get the school to provide extra support through the school psychologist, but due to cutbacks, she will have limited time on campus and may only have time for testing kids, not providing emotional support.
Which if you asked me, seems kind of strange. Shouldn’t the district provide enough hours to do more than testing kids, but actually helping them once they demonstrate their need for support? I’m thankful to have an IEP for my youngest, something I was never able to get with my oldest, but I know the principal can only do so much until I have to fight the district.
I’m not much for fighting these days. With the stress of my husband being out of work, and the added hours I’m taking on to earn more income with my home business, it leaves little time to fight administration.
I’ve also noticed that as my son grows older and enters the 5th grade, he’s becoming more aware of his differences due to his autism. He is already expressing concern about how the other kids will react to him when he prefers to walk alone playing video games in his head during recess. He’s worried the other kids will think he doesn’t like them. He also has expressed concerns about making friends and being accepted. I know as he goes through the coming years, he will face more of these challenges as the kids around him mature and become less accepting of differences in general.
I wish I could rescue him from his anxiety, I know all too well as I face my own anxious thoughts how hard it can be to remain positive when under stress. We are both working on “being the boss of our thoughts” and replacing negative thoughts with positive thoughts, but as my son said tonight, “some nights it’s pretty hard to do.”
Friday, July 24, 2015
I love that my boys have great imaginations.
And I love that my husband embraces it.
Recently my boys were driving in my husband’s car, when my middle son opened the glove box and out fell numerous bags of cookies and chips.
Now before you think my husband is a hoarder of snacks, I have to explain that the bags of treats were stuffed into his car’s glove box after a golfing event where he was given these treats to take home. He randomly stuffed them in there and forgot all about them.
When my kids found the treats, they of course wanted to know where these bags came from. With a twinkle in his eye, my husband told the boys that it was his magic glove box that supplied yummy snacks to hungry boys.
To much of my kids’ delight, they went along with their dad’s story and helped themselves to “The Magic Glove Box” every time they rode in Daddy’s car. Making a rare occasion a special treat!
Then one day my youngest son opened the glove box and found that all the bags were gone. He was so disappointed.
So the next time my husband left to pick up my youngest son, my husband popped a bag of popcorn and stuffed it into his glove box. When my youngest son climbed into the car, he caught a whiff of the buttery smell of popcorn.
“I smell popcorn!!!” he yelled out in excitement.
My husband nodded towards the glove box and said, “Maybe you should check the magic glove box.”
My son quickly pulled open the glove box to find the warm bag of popcorn inside, and with a big smile, he joyfully sang praises for the magic glovebox in Daddy’s car.
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I hope summer is treating you all well. We are doing pretty good, the boys have been really great, but the stress of my husband not finding work has been a challenge that requires our constant prayer and practice in giving our worries over to God. To cope, we are trying to focus on the small things that make us happy, like reading books on our back porch as we watch our birch trees dance in the wind, enjoying our favorite summer tv show Big Brother, and enjoying small moments with our kids—sometimes including a magic glove box for fun.
Sunday, July 5, 2015
This past week I realized that my kids have been in a safety bubble. For weeks now we’ve stayed close to home, most days enjoying the lazy days of summer in our neighborhood, not venturing out too far. With my husband still home looking for work, my kids have had the ability to stay with dad and not run the usual errands. They barely leave the house and they’ve been so happy, life has been pretty easy.
Then the night before a planned adventure to a small lake in the forest, my little one broke down. He was overcome with intense anxiety, crying out for me to hold him and never leave his side and begging us to stay home. He clearly didn’t want to leave home.
I popped his bubble.
It hadn’t dawned on me until then that my kids were so at ease because we have been living in a safety bubble where almost everything was predictable. The daily stress of school was gone, the constant movement of church groups, sports and activities had come to a complete stop and everything in my son’s world just got very comfortable. No wonder he has been so cheerful and compliant. He was stress free and there wasn’t anything to fight about.
I wish his stress ended there, but over the next few days with back-to-back adventures and a 4th of July party, he faced many more tough moments. I even saw it in my oldest when he was unexpectedly placed in social situations with his peers. He shut down and became very stressed. I was thankful that he was able to keep it together, but I could tell, and so could everyone else, that he was pretty upset and uncomfortable.
This week has taught me two things. First, my little one can not be homeschooled. Pulling him out of school would make his world too small and it would make it even more difficult for him to function outside our home. Second, we need to have balance. Sheltering my kids too much can have a negative impact on their ability to adapt to new situations. I don’t ever expect them to enjoy it, and I don’t want them to be constantly exposed to it, but they need to venture out of their comfort zone every once and a while to work on what’s hard for them.
Yes, we will still be the family that modifies almost everything we do so that our kids can enjoy life and we can enjoy being with them, but there is a fine line that we need to be aware of.
Balance, like everything else, whether it be food, exercise or social settings, it may not always be fun, but it’s necessary in staying healthy.
Tuesday, June 16, 2015
Well it officially happened!
My oldest son graduated from middle school—with honors!
We couldn’t be more proud of this guy, he continues to amaze us everyday with his continual progress.
If you’ve been following this blog for a while you may recall that starting middle school in 6th grade was pretty rough. There were days when we thought he would never make it. He was overwhelmed in so many ways, battling depression, facing bullying behaviors from older kids, bad teachers—6th grade pretty much sucked.
But 7th grade was much more comfortable. He was no longer the youngest kid in school, he was now familiar with his surroundings and made a new group of friends that were a lot like him. He also started to learn how to communicate better with his teachers, as did I.
Then 8th grade scooted along smoothly. He had a few hiccups and started Wellbutrin to battle the winter depression, and out of it we saw a more confident, happier kid with a lot of friends, and even a sweet girlfriend who he talks to daily. More than once I had a teacher say wonderful things about my son. As one teacher noted at the end of a correspondence with me:
PS: I absolutely love your son. He has a great sense of humor and is so incredibly sweet! He is one student who ALWAYS wishes me a nice day and a great weekend. You’ve done a great job!
I can’t tell you how much this meant to me, that a teacher noticed my son standing out among his peers for wishing her a nice day and great weekend. That he was recognized for being “incredibly sweet” melted my heart. She got to see my true son! To hear that he can connect with others in such a positive way made me so proud, more than any good grade would have.
My son finished the year with his IEP testing. In the end he was denied an IEP, but we did learn that he has a slow visual processing speed. This happened to be something he is born with and can’t be improved, so they will continue to allow the use of a calculator and extra time on tests to accommodate for this. I was glad that the testing was able to identify where his struggles were, this explained why doing long math problems and testing was so difficult for his brain to process, as he went through each step, his slower processing led to fatigue and ultimately him performing poorly.
Even though he was denied an IEP, the school met with us to help with his transition into high school. We have already started putting a plan into place. Hopefully we can make his transition into high school better than it was for middle school.
Can you believe he is starting high school already!!!
My little guy has grown into an impressive young man. Standing much taller than me, he has found his passion for computer programming. That is pretty much all he wants to do, other than talking to his girlfriend. He has taught himself many programming languages and continues to grow his skills. This week he’ll be building his own computer with his grandpa where they’ll be soldering the actual computer together!
After years of seeing him struggle doing math, or writing a paper, I have watched him come alive with computer programming. At the library he leaves with a pile of text books on computer languages, books that I swore would never be read were later filled end-to-end with post-it notes from his consumption of information. Where I once fought him to watch YouTube videos on how to complete a math problem, I now watch him complete multiple online courses on programing. It’s amazing to see him thirsty for knowledge and see him excel in something he knew nothing about just a few months ago. I’ve learned that my son has no problem learning if it’s on his terms and if it’s something he cares about. If only I can get that hunger to transfer to high school academics!
But more than that, I have seen my son become more stable than I have ever seen. I can not tell you the last time he raged or even became threatening. In fact, I watched him tonight teach his younger brother on how to cope with emotions in a social setting. The student has now become the teacher!
My son is happy, growing and thriving. I couldn’t have imagined a better place for him.
You may wonder... does my son still have challenges?
Yes, he does, but with the help of medication, maturity and learning how to manage his limitations, he is able to navigate through challenges really well.
As excited as I was to see him graduate middle school in a cap and gown, he adamantly refused to participate. Believe me, I tried to encourage him! As he said, “It’s not my kind of thing (crowds, stages etc.).” He also refused to go to the 8th grade trip to the water park.
I admit that I was a little sad to see all the kids in cap and gown, knowing that I would not be able to see my own son do the same, but I also realized that it has taken years for my son to recognize his own limitations and to avoid situations that might trigger him. And the fact that he can successfully do that now is a huge victory, one that I need to honor and respect. So I had to push aside my own selfish feelings and recognize that this ceremony is not about me and what makes me happy, instead, it’s about my son and what makes him happy.
So we humbly celebrated at his favorite place over burgers, fries and ice cream cones with just mom and dad.
Seeing him happy that day was a memory I will cherish forever. And I didn’t have to wait through a long graduation procession to see it!
* * *
I hope that this recent update encourages all of you who are in the deep pit of this struggle. I was there—everyday. We never thought it was possible to arrive where we are today. But I hope to encourage you that IT IS possible. Hang in there, be kind to one another, protect your marriage, hang on for dear life, do whatever you have to in order to survive and with the right tools and in our case medication, along with a dose of maturity and the grace of God, things will get so much better for you and your family. Never give up!
Sunday, May 24, 2015
Psych Week starts May 25:
If you haven’t tuned in before, this week the Discovery Life channel has a whole week dedicated to mental illness, sharing personal stories of individuals (including children) suffering from mental illness, autism and more. Check it out!
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If you aren’t sure where to find the channel in your neighborhood, go to the website listed above, once there scroll up to the top and use the “Find the Channel” link in the top right corner.
Saturday, May 9, 2015
It’s the eve before Mother’s Day.
I’m at Target, on the floor holding my youngest son down while he kicks and screams at the end of the men’s razor aisle, convinced that I have ruined his life.
What set him off you may wonder?
I told him that he couldn't bring his DS into the store.
I know everything would’ve been much easier if I let him stay glued to his electronics, and I admit I’m guilty of this sometimes for just that reason, but I really do try to help him blend into our world.
At dinner tonight I cut off all the seeds on his strawberries. Every itty, bitty, tiny seed. It was my attempt to have him eat something he refuses in order to help improve his diet.
The strawberries sat naked in their dish, shamelessly seedless. And unfortunately uneaten.
Are there points for trying?
So often us moms face failure as a parent. We go the extra mile, we follow through with the consequence, we even dare to make a scene in Target while other parents look on. Yet the outcome is epic failure.
But I have to believe that we still get points for trying.
Tonight I want to honor all the moms who have walked in my shoes. Who feel that no matter how much they try, they never get it right. I want to send praises your way, to let you know that I acknowledge you and your efforts. I have read your emails, I have sat across from you over coffee, I have seen you rise to the occasion when your child was in full meltdown mode, and got your message when you cried after. I am thinking of you tonight. Some of you I know personally, some of you I have never met, yet I want you to know that I SEE you. You are an amazing mom. You are doing the best you can everyday. You are making a difference!
Happy Mother’s Day Mama!
(And in case you’re wondering, YES we do get points for trying, and a few bonus points along the way for never giving up!)
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I noticed that this is my 601 blog post. Wow, I can’t believe it. Thank you all for still reading after all these years. I am so grateful to have you along my side on this unexpected journey. You have helped me in more ways than you could ever know. Thank you!
Thursday, April 16, 2015
Right now we’re deep in a valley and it’s hard for me to see the peaks ahead.
In the last week, my husband had his official last day of work after being laid off. My mom went into the ICU after a life-threatening infection and stroke that occurred at my house and on the same day, her sister, my dear aunt, went into the ICU after complications from her disease. After days at the hospital, I found out that I lost all my contract work that I was depending on to help my family because of a company’s new direction.
I don’t mean to be a complainer, I realize that others have it so much tougher, including my mom and aunt, but even so, it feels like my family is always in a state of crisis.
Can you relate?
It’s one tough thing after another and I feel so broken-hearted tonight.
It feels like I can’t catch my breath.
My job loss today wasn’t the worst of it, but following it, I drove around crying, sobbing more like it.
Why can’t my family get a break?
Haven’t we suffered enough?
How are we going to provide for our boys?
What stability will we be able to provide them under these circumstances?
And healthcare? My boys have a lot of doctors!
How can we help others that need it when we ourselves are falling apart?
Oh how I long to exhale and experience peace once again.
For months I’ve been drawn to a page out of Sarah Young’s book, Jesus Calling.
“Do not be discouraged by the fact that many of your prayers are yet unanswered. Time is a trainer, teaching you to wait upon me, to trust me in the dark. The more extreme your circumstances, the more likely you are to see My Power and Glory at work in the situation. Instead of letting difficulties draw you into worrying, try to view them as setting the scene for My glorious intervention. Keep your eyes and your mind wide open to all that I am doing in your life.”
I feel like God has been drawing me to this message for some time now. I have to admit, it has both comforted me and terrified me at the same time. Like God was preparing me for something very unpleasant. Almost like a warning. Like cliff notes to what lay ahead.
After this week, I can’t help but reflect on this passage once again.
I feel like many of my prayers have gone unanswered.
That nothing is happening in the time frame that I desire, I’m indeed having to learn to wait on God.
To depend on him entirely.
We are living in the dark. There are no jobs in our sight. I see pain and suffering in those that I love. I am experiencing pain myself.
I’m trying so hard to view my circumstances as a stage for God’s intervention.
I have to remind myself of this daily, if not hourly.
“Time is a trainer...”
Though I am grieving the week from hell tonight, I am going to wake up tomorrow and once again, choose to seek happiness. I don’t know if I will see it, but I will look long and hard for it. For God must have a plan for my family. And I am holding onto the belief that he will deliver us.
Thursday, March 26, 2015
Recently I had the humiliating experience of stranger intervention. It’s the embarrassing moment when people with good intentions get involved in the parenting of your child when they have no clue about what’s really going on.
While on a play date with another mom and her lovely girls, we were leaving an ice cream shop when my youngest son decided that it was time to go home. He was done with the play date and wanted to go home and play his video games since that’s what he usually does after school on a Friday. As he began to escalate, screaming and throwing a fit, my friend offered to take my older kids to the park while I worked with my youngest son to calm him down.
After they drove off, my son slowly deescalated and I began the process of helping him transition to the park. My son sat on a bench refusing to go, stating that he was “not sorry for his behavior.” In response I calmly told him, “That’s fine, you don’t have to apologize, but I’m still disappointed in your behavior.”
Then in front of me, I was startled by a woman’s voice saying, “Are you OK?”
Having the situation under control, I looked up and smiled and said, “No, we’re fine.”
It was then that I realized that she wasn’t talking to me. Once again, she looked at my son and said, “Are you OK?”
My son looked confused, not understanding why this woman was asking him this.
But quickly it dawned on me—she thought I was abusing my son in some way and she needed to rescue him.
My heart sank.
I caught her eye and said, “No we’re fine, my son has autism and he’s upset because he can’t go home and play video games right now. He’s currently stuck on this thought and I’m trying to help him transition.”
From there, she said, “Oh... OK, I work at a doctor’s office and wanted to make sure he was OK.”
As she wandered off, I couldn’t help but feel embarrassed and angry. I’m grateful that there are people that step up if a child looks in harms way, but I was totally confused as to why she thought that this situation warranted it. I wasn’t yelling at my son. I wasn’t dragging him or even trying to hold him down during his fit.
It was another moment where our family was misunderstood because of my child’s challenges.
It was another moment where someone put the “BAD MOM” label on me without even understanding the situation.
It was another moment where I was judged unfairly.
And it hurt.