I normally remain pretty optimistic when it comes to dealing with my 7-year-old son Jack’s autism. I try to look at the glass as being half-full. I think of how much worse things could be. I keep my faith that things will get better. I think about all the sweet things about him.
But this weekend, for the first time I can remember, I didn’t look at the glass as half-full. I saw it as completely full … of vinegar. For about three months now, Jack has been struggling. He’s battled one problem after another, suffering meltdowns all day and in the middle of the night. He’s reverted to banging his head, which hurts himself and others. Last night, I got a head butt in the shoulder and another in my back. He’s throwing everything he can get his hands on, from books to phones to remote controls.
People with autism battle suffer from more than just mental issues limiting social and communication skills. Jack’s little body is at war with itself. Based on the bloodwork we’ve seen from test after test after test, we’re pretty sure his body wasn’t strong enough to fight off the one-size-fits-all vaccine schedule we mindlessly put him on when he was an infant. We don’t know that caused his autism. But we do know it caused internal problems for him below the neck. Those problems have caused him pain for years, and unfortunately, he really can’t communicate that to us.
We’ve been working to fix his insides for a year now, but this process is like steering a car that’s out of alignment. Steer it one way to get back on track and all of a sudden you notice it drifting off in another direction. We adjust his course on the fly if we notice something isn’t working right. As I mentioned, for the past three months we’ve been living a nightmare. We’ve gone from constipation issues for him to problems coming off anti-fungals (he’s back on them now) to problems adjusting to a thyroid medication and there are other things that we probably don’t even know are causing problems. He’s been miserable around-the-clock since March.
Every night, we go to bed wondering what time he’s going to wake up screaming in the middle of the night. Countless times our oldest son Benjamin, who shares a bedroom with him, has had to relocate in the middle of the night to a sleeping bag on the floor in the playroom.
I think we hit rock bottom on Saturday. Well, I hope we did, because I can’t imagine it getting any worse. He woke up at 4:45 a.m. He was miserable, crying and tantruming the entire day. Since he doesn’t talk, we don’t know what’s bothering him. Since we can’t solve his problem, he gets upset and hits his head with his fists or slams his head into something.
Mid-day Saturday, he grabbed Benjamin’s prized possession, his Nintendo DS, and threw it across a room, which broke it. Add that to the list of ways autism reaches beyond Jack in our family. Ben took it pretty well, and lucky for him, he got an early birthday present from his grandparents (a new DS) last night.
Jack normally goes to sleep at around 7:30, but despite his 4:45 a.m. wakeup time on Saturday, he didn’t go to sleep that night until about 11 p.m. Yet on Sunday morning, he was up a little before 6 a.m.
It reached the point this weekend that we are looking at him like he’s out-of-control. We’re trying to figure out how to contain our own child, and it’s not like this is a result of 15 years of neglectful parenting. He has a severe neurological disorder and there are no real answers in how to deal with this.
It impacts our other two children, because they are hostages to Jack’s special needs. My wife Tiffany was upset Saturday night and telling me how she feels like she doesn’t even have an identity any more. She said it seems like her entire existence is to be Jack’s shadow. We feel like we’re neglecting our other two kids in this whole process.
But forget about the four of us — what kind of miserable existence does Jack have? Does he only know life to be a miserable, painful experience? Does he feel trapped? We reached a tipping point this weekend, no question.
He kind of calmed down a bit on Sunday night and went to sleep before 8:30. Aside from a brief, 15-minute meltdown about an hour before he went to bed, he seemed like he was starting to do a little bit better last night. If we really did hit rock bottom, hopefully his moderately calm demeanor last night was an indicator that he’s on the way up.
Amy says
Your weekend sounds exactly like mine, though I’ve become wary of using the expression “rock bottom” because there always seems to be more bottom. I know the frustration, the agonizing helplessness, the spouse feeling left with no identity. Please know you are not alone. I am here, and many many others, who understand and are in the same leaking, storm-driven boat. We can all hang on together. HANG ON!
sheila says
So sorry to hear this and Tiffany I can understand losing yourself in your son’s diagnosis. I always say the gut is the second brain and as we know, kids on the spectrum, heck everyone nowadays, have gut issues. Anti-fungals traditionally cause constipation, and who doesn’t feel lousy when they are constipated?? Thyroid problems cause constipation too, ugh! Saying prayers for all of you (hope that is okay).
Ali Hoffman says
Hugs to you all Sam. We’ve been there. I hope he’s heading towards feeling a bit better. It helps all the rest of it. I had a neuro dismiss Matt’s absence seizures and offered me respite resources. I asked him where Matt’s respite was. Where was his break from this life where he was struggling in such a big way. We’re treating the seizures – it’s made a huge difference. You know your kid – getting the gut settled will hopefully bring some relief.
Hugs to you all!!
Tony Rezek says
Although I love that you are normally positive and upbeat, I’m glad you shared with us what Autism is doing to Jack and your family. I know how lucky we are that Quin is mild/moderate. It sucks that Quin has Autism, and what all of us go through because of it. But, I often forget how much more of a struggle others have. Thank you Sam. This inspires us to work harder in our fight against Autism, to help kids like Jack, and families like yours!
Mandy says
I love your honesty about this, but I hate it for you and your family and for Jack. I pray for you all daily. I never know what to say….but I do want you to know that you are helping a lot of people with your honesty and your efforts to make the effects of autism known via your blog and your twitter. Sending your whole family love and prayer.
Mike Barrett says
With several boys of my own on the spectrum I know what you are going through. But, regardless of how bad it gets I am always reminded and seek comfort in the phrase, “this too shall pass.” I know it is heart-wrenching, especially the ancillary effects it has on everyone else in the family. But, this too shall pass Sam. It’s tough when you’re right in the middle of it, but in time you will look back on these times and all the stress it caused and know that it prepared you in some way for the future. And, like many things we have experienced with raising ours – time + tragedy = humor. In it is my prayer that in time you all will be able to look back on it all and make light of what it all entailed. Stay strong buddy.
Mike Barrett
Jackie says
You and your family are amazing. Hug little Jack for all of us. It breaks my heart that he’s hurting so bad. And my heart goes out to Tiff. She is such a good good mom! I have my days with Collin, but nothing like that. What an amazing family you are to be trusted with little Jack.
Just know we love ya and are thinking of ya!
Jason says
That’s a tough story… and a tough time to go through. Sometimes the downs seem like they will last forever. Sending tons of goodness and patience to you and your family… and hope and healing for Jack.
Kristin says
Sam, forgive me if this has been mentioned before, but have you tested Jack for celiac? It actually can go hand-in-hand with thyroid issues; I myself have both. It can cause constipation, stomach pain and bloating, etc., and malabsorption, which could mean he’s not processing his meds.
I mean no offense to you or your parenting — I think you’re doing as good a job you can in such a difficult situation. God bless you and your family.