I am still recovering from my weekend.
J. is too.
We’re being nice to ourselves today so that we can get back to normal. Our “normal” isn’t very “normal,” but our “not-normal” is even worse. I am getting little things done round the house, treating myself to things like a long shower, brownies, and TV during the day. J. isn’t doing any academic stuff today unless he wants to, and he’s having a grand old time banging nails. Later, we’re going to do art with friends. Easy. Nice.
Earlier this week things were anything but easy and nice.
My in-laws visited. That in itself is not a bad thing. We love Grandma and Grandpa B! But their presence here is something out-of-the-ordinary, and J. doesn’t do that well with out-of-the ordinary. It ramps him up. So here’s the setting: J is ramped up, my workaholic husband is working working working every second he can (i.e. when not “having fun” with his parents), in-laws are here, and I take J. to a new child psychiatrist for a re-evaluation.
I took him to the re-eval because while I’ve felt like his current treatment, medications, and therapies are helping, I also have noticed that the older J. gets the more frustrated and worked up he gets. He is on edge a lot of the time. When he’s on edge he can’t think straight and is more reactive. I wanted to see if there’s something that can be done about that. He’s also been very mean to me recently, and I worry that this will only get worse. I feel like attachment issues are rearing their ugly head, and while of course I’m willing to work on this in therapy I also want to see if there’s anything medically that can be done. A chill pill, if you want. Something that can get him to relax for a minute or two.
Add that to the recommendation by the FAS clinic that we start neurofeedback and our desire that he be in the best place possible for that to work for him and you see why I thought a re-evaluation was important.
So we see this new doctor. Who is, of course, 30 minutes late to the appointment. Then, once she’s there she doesn’t know why she’s there (the re-evaluation) so she needs to leave for 15 minutes to review J’s file, and when she comes back suggests a radical change in medication.
She’s a medication minimalist, she says. She seems shocked at my son’s prescriptions and although I tell her about the various trials he’s had before of different medications and his (lack of) response, she says that was then, this is now, he’s grown, and maybe things will be different this time around. She suggests he come off everything he’s on, and start a medication in a couple of weeks, once his system is clean. A medication he took a couple of years ago and which I told her had made him grumpy.
She also tells me he should be hospitalized for the transition, at which point I burst into tears and say NO WAY. He’s a baby. But she says that he would be the oldest child in the psych ward, which frankly horrifies me. She can’t believe he’s never been in the psych ward before, from what she’s read in his file.
She also tells me I need to lock up my knives. This makes me sob out loud.
She thinks that we’ve taken the entirely wrong course with him re: meds and his behavior is only going to get worse. She also says we need intensive in-home therapy (which I later discover that our insurance will not cover and since we have insurance our local mental health agency won’t cover, either). She insinuates that the reason J. responded poorly to counselors in the past is because those counselors haven’t been very good. I tell her how he always shuts down or acts out when asked to talk about himself and she says “good” counselors know how to deal with it.
I feel like I’ve been a crappy mom to not have found a “good” counselor for my child so far. All in all I’m listening to this doctor and feeling very fragile. My child has been mean, almost abusive (if you can say that about a 9-year-old) for weeks. My husband has been working round the clock. My in-laws are here, which is stressful. I haven’t been doing great at the self-care that is so crucial to people parenting special needs children. I’ve been told to lock up my knives and admit my child to the psych ward.
So my gut is off. My gut should have told me to reschedule the appointment the minute I found out the doctor didn’t know what I was there, hadn’t talked to my son’s regular P.A. or the other psychiatrist in the office, and maybe didn’t know a thing about fetal alcohol exposure.
My gut should have also told me to wait to try this meds change until AFTER the in-laws left.
But my gut wasn’t speaking to me that day, and J. and I go home and I take him off his stimulant medication that has been keeping him pretty well regulated for over 5 years now.
And all hell breaks loose.
By that night my father-in-law, who never raised his voice the whole time my husband was growing up, has yelled at J. I have been crying in the bathroom twice, and have developed an enormous migraine. My mother-in-law is hiding from J. in our spare room. The next morning was even worse. J. bit me 3 times, used every swear word in the book, threw things at me, pushed over his 72-year-old grandma, and essentially acted like a wild little animal. This went on and on and on until yesterday, 48 hours after the dr. told me to take him off his medication, I put him back on.
The gut spoke, and I listened. And our lives are finally, finally, finally back to normal. Whatever that means. But better than yesterday, that’s for sure. And we have a new appointment with our OLD doctor. Who called me at home, on her day off, and reassured me that we are all doing the very best thing possible for my child. Especially me.
Thank you, gut. Only wish you’d spoken up sooner.
Adrienne Bashista is the co-editor of and contributor to the book, Easy to Love but Hard to Raise: Real Parents, Challenging Kids, True Stories. She writes about parenting a special needs son, advocacy for special needs parents, and FASD (Fetal Alcohol Spectrum Disorder). She lives in North Carolina with her husband, two sons, dogs, chickens, and bees.
I am so with you today on wishing I’d listened to my gut sooner! I hope you find the answers you’re looking for very soon, you and me both! Hang in there.
Oh, Adrienne. Just reading your post made ME need a deep breath. I can feel your pain from earlier this week, ’cause I’ve been there. So glad that you’re getting back to YOUR normal. Wishing you a very PEACEFUL weekend.
Sigh. I’m so sorry Adrienne, for you and for J. Neither of you deserved any of that. I hope the meds are working and you’re both easing back into some “goodness.”
This is seriously my number one advice to other moms…trust your gut. But can I just say…thank you for sharing this. I have a relative who has continually put their daughter in the psych ward for med issues (supposedly) and I was really convinced this was them not wanting to deal with it. This makes me think it is weird Drs that are giving this recommendation because they too were told to lock their knives.
@Lisa – I don’t know that it’s bad advice from the doctor – after what happened on Tuesday I can totally see why you would hospitalize your child for a transition like that. I definitely considered it when we were in the throes of the whole thing. The problem here was really that I think we got bad advice to begin with, right? Or maybe the advice wasn’t bad but we didn’t have all the information and support (and timing!!) we needed to make it work.
I think the knives thing is standard advice if they ask you if your child has said threatening things to you – I had said that J said he wanted to kill us. Never in a million years did I think he MEANT it, but that didn’t matter. It was a CYA thing from the doctor, but it also really freaked me out.
And @Kelly, @Penny, and @Sara – Thanks! I know the pendulum will swing to the good side, soon.
Adrienne, I should clarify I am sure there are times. But this poor girl have been hospitalized more times than I can count for weeks at a time just this year. At last count she only has a Dx of ADHD and they are doing med adjustments. I just think each stay there is causing more insecurities and resentment and worsening the issue. I guess by bad advice I mean they might be too quick to hospitalize. I think taking a very young child away from their family like that should really be weighed carefully as an option.
I absolutely agree you have to go with what you believe – you are the expert on your child. We tried meds and they made matters worse, but if they worked we would have her on them because she is so hard to keep safe. I’m sorry you had to go through that. I parent a child with FAS, RAD, ADHD, ODD, and SPD so I get it. I do keep everything locked up though – all cabinets, knives, etc, because my daughter has little impulse control. I think it’s a wise precaution. I have also had to take anything that can be thrown out of the living area to protect our big tv. I know how hard it is to have a child be mean to you. I started something new the last few days – I told my husband to think of our daughter as an emotional vampire who feeds on emotions, so that when she has an outburst we can stay calm and not feed the vampire. It sounds wacky but it’s working. If she doesn’t get a reaction she initially will escalate but then stop. We also walk away and refuse to engage. Our daughter is also very assaultive and the usual timeouts, etc don’t work, so now we quietly go in her room and put a toy in timeout. Wow, this works great and may sound mean but a child that will kick,hit, bite at 5 will do more damage at 13 so we are doing what works.
Hugs to you – hang in there.
Thank you for sharing. BTW, the paragraph about the workaholic husband, the boy who gets ramped up, etc. sounds very familiar.
I needed this post so much today. I have been ignoring my gut about one of our theripists for a few weeks (mostly because the therapy will end in just about a month either way) but this post reminded me to listen to it. Thank you.
Oh Adrienne, you poor thing. It’s too bad the dr. didn’t take the time to really know J’s file in and out, learn about all the meds he’s been on and the efforts that have been made – and stay objective. What a tough week to go through.
Oh Adrienne – how absolutely horrible for you. And how totally horrible for poor J – how totally out of control he must have felt. Listening to our gut is probably the best advice any special needs parent can ever hear. And I’m sure next time, yours will be louder when you need it. Really big hugs!!
Wow. And wow.
What a horrible experience! As a mom, you are doing a great job. We’re not trained doctors. We’ve been led to listen to their expertise. Don’t beat yourself up for following the medical advice. You’ll find the appropriate doctor who understands and works with you.
Way to stand up for your family.
As much as the meds help, they always cause other problems. I hope you find your magic combination. We’re still working on the pros and cons of our new med. It’s more than trying.
All the best to you and yours.
Like Annette said: hugs, hugs, hugs to you. -Kay
Just wanted to tell you that I think not engaging or reacting is working. When I spoke with a member of the FAS team, she recommended we do this, so you might want to try it. Had an awesome day with her yesterday and she stopped threatening to smash things and being destructive, which is huge. I hope things get better for you soon.
Pingback: Update, mornings, and complete and utter guilt. | Easy To Love But Hard to Raise