Thursday, April 12th
Tim and I are sitting in the office of the boys’ general pediatrician. We’ve just handed her the Vanderbilt Parent Assessment for ADHD. After a phone consultation the day before with Howie’s developmental pediatrician, I downloaded the form from the internet and brought in to the doctor.
The doctor looks at Tim. “Did you fill this out together? Do you agree with the answers on this sheet?”
Yes, Tim answers.
“Wow. Well, I don’t even have to officially score it. His numbers are so high. We’re clearly looking at adding an ADHD diagnosis here.”
I knew that already. In addition to finding the assessment on the internet, I also found the score sheet. Because I’m that mom now.
“So,” the doctor said, “let’s talk about what’s next. You already have all the behavioral supports in place. It’s time to talk medication.”
Again, we knew that already. We had done our research. The conversation was not if medication, but which one.
I was grateful to have Lewis sitting on my lap. I could focus on him and fight back the tears.
My friend asks me later that day through e-mail if I’m relieved to have this new diagnosis. She’s referring back to when Howie was diagnosed with autism back in December 2009, when I said how relieved I was to finally have an understanding of what was going on with my son. “It’s not like that this time.” I said. “It’s more like : okay, now what.”
Acceptance starts at home.
Friday, April 13th
I am supposed to meet a friend at dinner time for a political meet and greet. Lewis and I had spent an hour that morning running around, trying to find a place to fill Howie’s prescription. I sat at the kitchen table, fumbling with the medicine bottle.
I write my friend the following e-mail:
So…I can’t do it. I am a mess. I can’t go tonight. Getting the meds proved to be more of a trigger than I thought.
I know this is the right thing. I know this is the next path. Rationally I have no second thoughts. But I am terrified, anxious, worried…and sad. Really really sad.
I can’t get my game face on tonight knowing what tomorrow brings. Or might not bring. I kinda just want to cuddle up with Howie tonight as he thrashes around in his skin before everything changes.
So I’m sorry. I hope you get it. Well, I know you’ll get it. I really really wanted to go. Really really really.
Love, Alysia
Acceptance starts at home.
Saturday, April 14th – Saturday April 28th
I see the change right away. With one dose. He’s calmer. Clearer. Words and thoughts and feelings are coming out that never did before. His first week on the medication was our spring break week. We are able to problem solve and work things through. His clothing anxieties are gone. I don’t have to sit in the room when he played with his brothers to facilitate play. I wasn’t sure if I was just seeing something because I wanted to see it, but others saw it too. When Howie returned to school, he had his best week in months. School work was fun again. He’s interacting with peers, taking turns, and playing games. He has two amazing soccer practices.
Acceptance begins at home.
Sunday, April 29th
Things begin to unravel.
Anxieties are back with a vengeance.
Meltdowns are powerful.
I pull him kicking, screaming and crying off the soccer field.
Acceptance is getting harder to swallow.
Tuesday, May 1st
His aggressions return at school.
His beloved bus driver quit and he refuses to get on the bus to go home, instead screaming and flopping to the floor in the principal’s office. I’m called to get him.
He tears at his clothes for two hours before finally falling asleep.
He tells me he wishes he wasn’t human.
I can’t accept that.
Wednesday, May 2nd
I keep him home for a personal day.
We make the world’s best marble track and have cupcakes for lunch.
He has his best home therapy session in weeks and spends the evening at a friend’s house making homemade pasta.
I confirm our appointment with his pediatrician for the next day.
Acceptance is falling apart.
Thursday, May 3rd
I tell our pediatrician about school. She examines him and tries to talk to him about how he’s feeling.
He stares at the red airplane with the number 6 that hangs from the ceiling.
The doctor looks worried. She turns to me and says “This isn’t Howie.”
I nod.
We agree to take Howie off the medication.
We pack up our stuff and she looks right at me. “We’ll figure this out. It will be okay. You’re doing fine.”
I’m trying to accept that.
Tonight
I went downstairs to get a snack.
I slid to the floor and cried.
I cried because I believe that my son needs some medication in addition to all the behavioral supports he has. But I don’t know how to find the “right” one.
I cried because for two weeks I felt like my kid was back. The one that was all full of awesome when preschool ended last year. The one who laughed and ran and played and loved school and everything about it. That is my kid.
My kid is not the kid who hits his teachers and screams at his teammates on the soccer field or erupts in a fit of rage when someone takes his toy.
I refuse to accept that.
We will figure this out.
Together.
We have to.
“But I do believe
That not everything is gonna be the way
You think it ought to be
It seems like every time I try to make it right
It all comes down on me
Please say honestly you won’t give up on me
And I shall believe
And I shall believe” – I Shall Believe by Sheryl Crow
May 3, 2012 at 10:33 pm
I believe in you.
May 3, 2012 at 11:11 pm
Oh…damn it. You made me cry.
May 3, 2012 at 10:35 pm
I understand your frustration. Can I ask if Howie is on a medication for anxiety or depression? My son is very hyper from his need to constantly move but he was started on Celexa & his meltdowns decreased dramatically. He handles transitions to new activities well & he’s verbalizing his thoughts much more coherently now. I just wonder if your sweetie has been tested for any of these types of medicines. I wish you all the luck in the world with determining exactly what he needs & that it happens soon.
May 3, 2012 at 11:11 pm
He’s not on anything else at this time. We decided to start with the stimulant to see if it helped him at all, knowing that anxiety meds might be coming next. I’m so happy to hear that the celexa is helping your son. That gives me hope
May 4, 2012 at 5:53 am
Alysia,
The reason I left you that comment last night is to let you know that there is always hope. My son is sooooo overstimulated by his environment anyways that adding a stimulant to his system didn’t sound like the right thing to do from the beginning. He has struggled with anxiety since he was an infant. He spent months sleeping curled on my chest as a baby, then there’s the nail biting, the screams of terror if *anyone* picked him up except me, the clinging, the fear of anything out of the ordinary…I could go on & on, but all of this has subsided (except the nail biting which we now think is more habit now than anxiety b/c its not near as bad as before). Some of the things you describe in Howie remind me so much of my little “Screech”. He’s very verbal, very “spirited”, very curious, & he fought with being very nervous about any changes big or small. He is doing so much better with these now. He is on .07 mL of Celexa, the smallest dose is .05 so it is possible that just a tiny bit can help. I’m sending you all the best wishes in hope that you find what works best for him. (((HUGS)))
May 3, 2012 at 10:36 pm
Sending love and positive energy your way. <3 Debbie
May 3, 2012 at 11:12 pm
Thank you <3
May 3, 2012 at 10:44 pm
Oh, Alysia, I am so sorry this is happening! It has to be so tough to know that he needs help, but not know exactly how to get it. I wish I really could come over and have brunch with you and Lizbeth. I know it wouldn’t fix anything, but maybe it would help. I know it would help ME. I’m thinking of you guys.
May 3, 2012 at 11:13 pm
Thank you. But what do you mean you wish we could have brunch? You mean we aren’t?
thank you for all your support.
May 3, 2012 at 10:47 pm
I’m a special education teacher with quite a bit of experience dealing with children who are on medication. Finding the right medication can take a long time. What works for one child doesn’t always work for the other. I’ve had many students who have had exactly the same experience as your son. It seems to work for a few weeks and then doesn’t seem to be doing anything positive for them at all.
It will probably be trial and error for a while, so hang in there!!
May 3, 2012 at 11:14 pm
Thank you so much for saying this. This helps a lot. I know it might take a while to figure out what will help.
May 3, 2012 at 10:49 pm
“I slid to the floor and cried.” Oh Alysia, its the worst feeling in the world to have your child fall to pieces bit by bit right in front of your very eyes. And while acceptance does start at home, it doesn’t mean we have to like it in its current condition.
There is no easy path in this, no easy out and no magic bullet. But there is hope. There are your friends and there are people who “get” it. And there is the understanding that he has you. And you will figure this out. You will. In the meantime you have us.
Hugs and love. Hugs and love.
May 3, 2012 at 11:16 pm
Why isn’t there a magic bullet? Arrgh. I appreciate the love and the support so much. Knowing you are out there and get it means so much. Meanwhile, i’m off to home depot to buy some PVC pipes for our summer play time
May 3, 2012 at 11:05 pm
it’s so hard. so very very hard some days. and the medication factor can be excruciatingly difficult. to medicate? or not to medicate? those are NOT the only questions! Which medication? What dosage? Side effects? Risk/benefit analysis. *sigh*
I’m so sorry you are going through this Alysia! I believe you all will get through this and you will make the right decision for your son because you are *that* Mom! Thank you for sharing your story! And know we are all out here for you! <3
May 3, 2012 at 11:17 pm
Yup. You hit it. Once you get passed the should we, it’s the what and how much and when and on and on and on.
Thank you SO much for the love and support.
May 3, 2012 at 11:16 pm
The one-two punch of Autism and ADHD is tough. We live it here, too. I know how difficult it is to watch from the sideline as your child struggles to be in his own skin. My sons meds have been working, but I don’t think we’re totally there. The struggle to find the right mix of therapy/aides/reinforcement and meds is a tough one.
I have struggled with the med thing, too. Hugs for you tonight.
May 3, 2012 at 11:19 pm
Ahhhh…I didn’t know you were doing the same dance. I knew we had too much in common
I’d love to hear more about your experiences.
Thank you for the hugs tonight.
May 3, 2012 at 11:35 pm
Sorry I haven’t visited in a while! I feel your pain Alysia…we’ve done the medication thing and have not settled on anything difinitive. Our son is still an anxious mess whenever he is not in his “element.” It is hard because we cannot just “let it go” and we want the best for our kiddos. Hang in there…. pulling for you!
May 4, 2012 at 8:55 am
Thank you for this…yes, we can’t let it go but it’s hard to know what’s best. That’s it perfectly.
May 3, 2012 at 11:51 pm
We have been trying to find the right medication for our son for over a year. Just as I was about to throw in the towel, he forgot to take his med one morning, and I saw (or heard from the teacher) what a difference it made. So, although what he is on now is not perfect, it is helping.
I struggle with acceptance all the time. I feel you, and I’m supporting you from afar.
May 4, 2012 at 8:56 am
Wow, that’s really interesting. I wonder what we’ll hear today. Thank you for sharing that.
May 3, 2012 at 11:51 pm
Stay Strong. YOU AND TIM ARE AMAZING! I feel for your struggles and desire to have “your” son back.
May 3, 2012 at 11:53 pm
Medication is a hard decision to make in the first place. Believe me, I know. Unfortunately you may have to try a bunch. It’s just a puzzle piece in the whole puzzle. It will come together. BTW my son is on the generic Concerta for ADHD. He’s been on it since 5th grade. Took us a year to decide to medicate him. I think he will outgrow it’s usefulness as he learns and develops. I look forward to that day. We don’t give it to him on weekends or vacation since his issues are with focusing in school. Big hug for you!
May 4, 2012 at 8:56 am
Thank you for telling me this. You’ve helped me a lot with all this. I appreciate it all.
May 4, 2012 at 12:49 am
Our son Christian is 6. He was diagnosed with ASD three years ago and with ADHD about 7 months ago. When I went to the pharmacy to get his first prescription filled I had to make a physical effort to put my hand out and take those pills from the pharmacist.I then sat in the car and cried.I felt like I had failed him. Like by accepting those meds I was doing the opposite of what I ask of everyone else, I was not accepting him as he is.But they helped.They made him calmer in class, his learning jumped ahead.Fast forward to the last two weeks and it is all falling apart. He is ‘wired’ all of the time. From the minute he explodes out of bed at 4.30 in the morning untill he falls asleep at 7.There has been aggression at school.His teacher tells me today that she does not know how long she can ‘do this’ for.Seriously? What am I meant to say to that. Hugs to you.
May 4, 2012 at 8:57 am
Hugs back to you. That’s a very hard thing for a teacher to say and I’m so sorry that things are so hard for your son now too. We’ll get thru this. Together.
May 4, 2012 at 1:42 am
My son is 8yo with ASD and ADHD and he has been using stimulants for 2 years. Like you, his dad and I struggled with the decision. It helped that we had a child psychiatrist who always reassured us that by trying a medication we weren’t committing to it forever — if for any reason it didn’t work out, all you have to do it stop giving it to your child. Our kitchen cabinet is full of miscellaneous leftovers of meds that didn’t work for one reason or another. We were fortunate to find one medication that worked well for 18 months. When he started getting moody at the end of the day on a regular basis, we knew it was time to try something else. It feels overwhelming in the beginning, but please know that it is possible to find something helpful for your child. One thing we have done from the beginning is to periodically ask our son how he feels before and after he takes the meds. We want him to begin to recognize what it feels like when he doesn’t have the med in his system and how it affects how he feels and behaves (or can behave) when he takes it. By engaging him in these conversations early, we hope he will become an active participant in decisions about his body as he grows.
May 4, 2012 at 8:58 am
Thank you – this is incredibly helpful to know. I know it will be trial and error, but I like your idea of talking it thru with your son. Great great advice.
May 4, 2012 at 2:13 am
Given our inclination to a more Natural and Homeopathic approach to our health, it was a tough decision to give Gabriel the suggested meds. The medications have definitely helped and often have made a big difference in Gabe’s ability to function and be at peace with himself. The key was having a doctor that would listen and trust what Gabriel’s mom was reporting and assessing. The type and dosage is not an exact science, so there is a lot of trial and error and close evaluation. There has always been an effort to minimize dosages to get by with as little as possible. A very small amount of Paxil in the AM has helped minimize Gabe’s anxieties which feeds his obsessive compulsive behaviors. But there are days which the obsessiveness rules but they are manageable.Some Serequel at night has helped with sleep. This, combined with an amazing behavioral therapist that Gabe loves working with as they achieve goals together, has given my son a better quality of life. IT GETS BETTER because mothers like you and Gabe’s are true heroes.
May 4, 2012 at 8:59 am
Thank you Allen. I have learned so much from the path you’ve taken with Gabe.
May 4, 2012 at 3:21 am
Hugs. I have been there. ADHD drugs are hard on kids with autism. They made K rage (we attempted a non-stimulant one, as our psych said the stimulant ones were really bad). Didn’t end up mattering. I would sit and watch my girl’s face change. We quit right away. Doing the med thing is hard. We have tried a few. One worked alright, but the side effects were too much. Another didn’t help at all, even though others sing its praises. We’ve yet to find something that really helps, and I struggle with even knowing if I am doing the right think trying them. All we want for our kids is peace…I know I want that for K. I hope we can all find it.
May 4, 2012 at 9:00 am
All we want for our kids is peace. Exactly.
Hoping we get it for both of our kiddos. Soon.
May 4, 2012 at 8:21 am
We’ve been there too. Yes, it was a different reason that we gave Little Miss medication, but the night before we started her on her seizure meds, I cried like a baby. I was terrified that the meds were going to take my sweet little girl away from me. When we had to add a second medication to control break-through seizures… a vallium derivitive — I almost refused. Actually, I did refuse — at first. But despite the fact that medication in little ones is often diffiult to gauge, the doctors DO know what they are doing.
Our lives are still very different with Little Miss on meds, but things have improved since those days. There is hope.
Sending my hugs and support — and please don’t hesitate to email me or hit me on FB if you need to talk!
May 4, 2012 at 9:01 am
Sending you my love as you figure this out as well. Here for you too.
May 4, 2012 at 8:22 am
I read your post with a sense of dread that in not too long of a time, I will need to face exactly what you are dealing with. I’m glad to know, though, that I’m not the only one that is having anxiety and stress – not just from you but from the other commentors.
I can only imagine to be a really rough road with no true answer. I think that makes it an even bigger challenge to face. So all I got is a {hug} and a hope that it will smooth out soon.
May 4, 2012 at 9:02 am
There’s no definite answer, that’s for sure. And I’m finding that just as each one one of our kids is different, every kid reacts differently to what they need. We’ll all figure it out together.
May 4, 2012 at 8:31 am
Wow. I’m sorry that you (any of us) have to go thru this. It’s not right or fair. In my house, we’re staring down the barrel of an ADHD diagnosis as well and it terrifies me. I don’t know what to tell you besides that you’re not alone and that I hope you figure out what works for your son soon.
May 4, 2012 at 9:02 am
Thank you. Knowing we all are here together helps so much. <3
May 4, 2012 at 9:09 am
Sending you a mountain of good thoughts
I was feeling so elated as I went down the first few days and then my heart broke
you WILL figure it out of course
May 4, 2012 at 9:13 am
WE will figure this out and find the right medication. Even though I am not there to help find the right medication, I am here to give you long distance hugs and tell you that you are AWESOME! I am amazed with your strength, courage and determination! I wish that I was closer just so that I could come over and pass you the tissues, please remember that you have to let the tears and frustration out!
There will be the right balance and you will see the Howie you are looking for!
May 4, 2012 at 9:26 am
Damn it, you did it again! I’m crying with you! We’re going through the same things with my daughter right now. It’s not new–she’s been on meds for depression for a year already. That was hard. Trying to figure out her ADHD meds is even harder. We’ve seen the monster, we’ve seen the zombie. We pulled her off them after 2 attempts and I was scared to try something else. We have an appt. today with her psychiatrist, after me being in denial for the past 6 month, because she feels so bad about herself again. And that, as you know, is the worst thing for a parent!
It sucks that so many people can relate to how you feel, but I hope you find strength in numbers. I know I do. Take care of yourself and your baby, and feel free to scream and cry as needed! Love to you
May 5, 2012 at 8:24 am
Oh, Alysia, I so feel your pain. I am so sorry you have to be there in that awful place. Watching your kid become someone who just ISN’T your kid, seeing them come back to themselves & thinking you’ve found the “magic bullet” then watching them devolve again… it breaks a mother’s heart is what it does.
My kids have been on some sort of psychiatric medication for a while, Jake since he was FOUR and my sweet boy suddenly started hitting and pushing other kids. Pediatric psychopharmacology is such an art, and while you’re going through the trial and error times you think “I just can’t take this anymore.” I have giant hugs for you and your boys who are going through all this right now. You will find something that works. Hang in there, babe. (And call if you want to talk and hear details about our journey through meds. Any time.)
May 5, 2012 at 8:55 am
Alysia, my heart broke to read this for you and your boys to be going through this. We went through a similar medicine problem for anxiety, and I know how painful it is to see your child not be himself and be tormented when the meds are wrong. Thinking of you and sending huge hugs and positive thoughts that you’ll find the right one soon.
May 5, 2012 at 12:21 pm
Another tough part of the journey we’re taking together. Over the last year, we’ve tried four different medications for Pudding, and we’ve seen side effects (some completely unexpected) in all of them. I think I’m done with the whole thing. It is hard to try in the first place, it is even harder when it fails. I’m here for you, as always.
May 8, 2012 at 8:54 am
We have spent almost the entire school year trying different meds for my daughter. It takes a while, but has been totally worth it to have finally found one that works well for her. Her grades are coming back up, and school is fun again. No more fights and meltdowns over homework. Hang in there. It’s rough, but nothing compared to how far you have already come.