I Am His Voice

Perhaps it’s because Anna’s issues were so dramatic when Dominic was born, perhaps it’s because he is my first and only boy, perhaps it’s because of relative perspective… whatever the reason, I was in deep denial about Dominic’s challenges. There is a pervasive stigma that ADHD is over-diagnosed and certainly over-medicated, so I had my heels firmly entrenched deep in the ground… Not.My.Son.

Over the last month, I’ve spent some time cleaning out my photo archives from 2010 and 2011. As I looked back through and deleted blurry and duplicate photos, I saw my happy boy, a little boy who was whip smart and funny and kind. As I got near the end of 2011, I saw him change. Rare were the smiling photos, more frequent were sullen expressions. He’s been through a really hard time and I know I’m bad about feeling guilty, but I do. I should’ve gotten him help sooner. I should’ve reached out to support groups. I should’ve accepted that he too has challenges and his own special needs. I should’ve. I should’ve. I should’ve.

The psychologist used the following evaluation techniques over two sessions:

  • Clinical Interview
  • Record Review
  • Child Behavior Checklist
  • Teacher’s Report Form
  • Wechsler Intelligence Scale for Children IV
  • Woodcock-Johnson III Tests of Cognitive Abilities
  • Woodcock-Johnson III Tests of Achievement
  • Revised Children’s Manifest Anxiety Scale II
  • Sentence Completion Test
  • Intermediate Visual and Auditory Continuous Performance Test
  • Thematic Apperception Test
  • Children’s Depression Inventory

Quite comprehensive, eh? I will reiterate that I’m sharing all of this information to connect with other parents who may have a child with ADHD or behavior problems and wondering what to do. We’ve invested thousands of dollars into helping our son because he requires it. We will do whatever it takes to help him as I’m sure every other parent would.

So the results of these evaluations unequivocally support the diagnostic impressions of Attention-Deficit/Hyperactivity Disorder, Combined Mixed Type, Moderate, Dysthymic Disorder (depression), and Anxiety. On the IQ tests, Dominic scored in the Very Superior range, especially in verbal domain. He also did extremely well in overall perceptual reasoning and working memory. His overall IQ is 133.  On the achievement tests, he scored in the 149-151 range for reading and written language. Where he scored lower on both tests with extreme outliers were on tasks that were tedious and monotonous and those specific subtasks are considered to be the easiest among their respective batteries. Dominic’s performance on these types of tasks appears to be related to his persistence in the moment and the degree of interest he takes in the task, which is a red flag for ADHD. Then he was tested with the Intermediate Visual and Auditory Continuous Performance Test on which he performed below average. This test uses both auditory and visual domains and tests his ability to inhibit incorrect responses, sustain effort, and make consistently correct responses. He showed problems with response inhibition, impulse control, distractibility, and difficulty maintaining attention to a non-stimulating task which further supports the ADHD diagnosis. The emotional tests showed a variety of issues related to anxiety, depression, social problems, rule-breaking behavior, and aggressive behavior. He is frequently worried, concerned about his relationships with others, and is quite remorseful about his negative behaviors. He is experiencing low-grade depression and anxiety.

The psychologist had a number of recommendations which I’ll share in detail. Anna’s case manager with MDCP (she manages our respite hours) visited last week and I shared what was going on with Dominic. She shared that her son also has ADHD and they are in the process of talking with the school administration about how to support him at school. When I shared these recommendations, she was very grateful as there were some concrete things she was going to take to her next meeting from our report.

  1. Dominic should be evaluated by a psychiatrist in order to determine whether or not he is a candidate for medication in treating his ADHD and dysthymia. He should also continue to participate in psychotherapy. (Dominic has been continuing to see his psychologist once a week since January continuing through at least April. I’m going to discuss the psychiatrist and meds later in the post.)
  2. Management of ADHD involves three components: education about this disorder, medication, and increased structure. (There was a huge packet of info about ADHD included with the report.) Further information can be found at CHADD.org, ADDitudemag.com, and LDOnline.org. The results of this evaluation should be shared with Dominic’s school administrators to determine if he is a candidate for 504 accomodations. It is unlikely that he will be able to demonstrate his Superior intellectual abilities without appropriate support and accommodations. Further, his difficulties are negatively impacting his relationships with peers and in the past have negatively impacted his relationships with his teachers. (We did get a 504 plan put in place. The assistant principal, Dominic’s teacher, his TAG teacher, his PE coach, the art teacher, the school counselor <who also leads his social skills group>, and one other that I can’t remember, all attended the meeting.)
  3. Dominic should be moved to the front of the class where the teacher can check frequently for understanding and on-task behavior. Allowances will need to be made for the variability in time it will take Dominic to complete tasks. The more tedious and monotonous the task, the longer it is likely to take. Therefore, it might be appropriate to modify assignments so that Dominic needs to complete fewer items to demonstrate mastery. (For example, if a math test has 100 questions, have Dominic only complete 50 to demonstrate mastery. He only needed to move his seat in one class… all the other teachers already had him close to the area of instruction.)
  4. Increased responsibility may enhance Dominic’s enjoyment at school. He might enjoy reading to younger students, or running errands for his teacher. Additionally, when Dominic has a good day, this should be noticed and he should visit the principal for a positive referral. Sending a child to the office when they are “good” often motivates them to try harder to regulate their behavior at school.
  5. The teacher and administrators will need to have clear policies in place to address inappropriate behavior. Provide Dominic with a “cool down” spot when he distressed, rather than engaging in a power struggle. Do not reprimand Dominic in front of other students. Utilize positive reinforcers whenever possible. Use nonverbal signals to remind Dominic to return to work or calm down. (Each teacher has created a cool down spot for Dominic in their classrooms. His first grade teacher last year used to dress him down in front of the class all the time and she did a lot of damage to his self-esteem.)
  6. Pair Dominic with “popular” students and students that are successful socially. Popularity often rubs off. This will be especially important if Dominic is having difficulty on the playground. (This was implemented and they sit together. Dominic has asked her to signal him if he’s getting out of control to help him decide if he can rein in his negative behaviors.)
  7. Dominic tends to have more difficulty in unstructured situations. It would be useful to educate teachers and support staff in the situations about Dominic’s difficulties and provide strategies for responding. Dominic may also respond to positive consequences for behaving appropriately in unstructured situations. Prior to making the transition to a semi-structured activity (e.g., PE) review two or three rules he needs to follow, ask him to repeat the rules, then reinforce throughout the period. This intervention is sometimes referred to as a “correspondence contract.” (Dominic often has trouble in PE. He is trying wearing headphones and the PE coach is keeping him close to her during the entire class.)
  8. Dominic may require a Behavior Intervention Plan (BIP) at some point. Utilize positive reinforcers. Reinforcers should be delivered frequently. Parents can be included in the BIP and utilized for provide daily reinforcers for successful days. (So far we haven’t needed a BIP. Anna has one though.)

When Dominic was 4.5, he saw Anna’s neurologist who diagnosed him with ADHD and at that time, we tried Focalin and Vyvanse, both of which had severe negative side effects. He behaved well during the day, but when the medication wore off in the evening, he was ultra-hyper and wouldn’t eat or sleep. After the medications failed, we saw a child psychologist who did a bunch of tests and said he *might* have ADHD but he was so incredibly intelligent that his behavior problems were more likely due to boredom. So even though he was kicked out of three preschools for negative behavior, we did not pursue ADHD or medication again and instead focused on stimulating him intellectually.

Our next step was to see the psychiatrist. Initially we were going to have to wait nearly a month until the beginning of March to see him but when Dominic was temporarily suspended from TAG class, I broke down and begged to get in sooner. Our psychologist also called the psychiatrist and said that Dominic was in crisis, so we got in a couple of weeks ago. Because he had such a negative reaction to stimulants a few years ago, the doctor did not feel comfortable trying them again. He recommended Strattera. We started at 25 mg for a week, then went up to 40 mg. The bad news is that Strattera only comes in pill form and Dominic had never swallowed a pill before. So we went to YouTube and found an awesome video on how to swallow pills (you can see it HERE) so Dominic was ready to tackle it. Strattera floats so this makes it harder to swallow with water so we ended up putting the pill in a little bit of peanut butter and he swallowed it! He was so proud of himself that he sobbed. I was so worried… was he hurt? What was wrong? As I hugged him tight, he said, “Mommy, these are tears of joy!” He did great for the next three days also but then he got sick with a sore throat. I think because his throat was swollen, he just couldn’t swallow the pill. That psyched him out and the next night, it took us an hour and 15 minutes to get that pill down his throat. So I called the pharmacist, I called the psychiatrist, and I trolled the Internet. Everything we heard is that the capsule can’t be opened. It’s time released and the contents are caustic. We bribed him, we threatened him, we cheered him. He just couldn’t swallow the pill, he wouldn’t even try. Finally, I called People’s Pharmacy here in Austin (known for compounding) and found out that they HAVE compounded Strattera to a liquid form. Yay! So we had the psychiatrist contact them and we now have Strattera in liquid form. It tastes horrible (it’s very bitter and yes, I did taste it) but Dominic’s stress level has come way down so it’s worth it. Strattera takes several weeks to get to full effectiveness but I swear we noticed a difference in the first week. Since switching to the liquid, he’s not as stable so I’m wondering if it’s not as effective in liquid form. We see the psychiatrist again at the three-week mark in early March so we may need to tweak then. We may have to add Intuniv down the line but I’m certain that meds will work and will help him control his impulsiveness and anger. I’m certain of it.

So that’s our update. Whew! Thanks for reading through that long, long bit of information. I have to tell you that I’ve already received a very sweet, private email from another mom whose son is experiencing his own struggles. This is why I share. To connect, to educate, to be his voice. I asked Dominic for permission to share this post and he agreed. He said that he felt bad about himself before starting this process and now he feels like there isn’t something wrong with him anymore. Oh, my sweet love. I also asked Dominic if he had any advice for other kids who were facing an ADHD diagnosis, and he said:

You may have to take medicine. Don’t be nervous.
Make sure to feel good about yourself.
Feel good about who you are.
Don’t give up on yourself.

Wow! He’s only seven years old and what a wise, wise soul he has. I am so impressed with him.

Now… some fun stuff! Dominic had a mild case of the flu last week and was home most of the week. On Thursday, he started feeling better and volunteered to do a photo shoot with me. I’ve so missed taking pictures of him and was super excited to take him out for a session. It was super overcast and the clouds really diffused the light. Since he was still recovering, we kept it short. Here are some of my favorite images.

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portrait boy Austin child photographer

Don’t you love that smile? I do. And I’m so glad to see it back. <3

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  • Rebecca Spencer - Love you Holly x You are one fabulous mother, looks like you are raising a wonderful young man there.ReplyCancel

  • Amanda - You just described my oldest child to a tee. He was diagnosed with ADHD about 3 years ago. I knew he had something,considering I was raised with my brother. Who has ADD and ADHD. We tried non-medicated techniques first,with ZERO result. We’ve since moved to Conserta and he’s doing better. It’s a time release so it lasts but he’s become slightly more aggressive? So we’re waiting for Spring Break to try and move forward with a different medication. — I always feel SO torn! My youngest has Autism. I’m constantly having to work with HER,over her brothers (both my boys have ADHD)and I feel like I’m playing favorites. But I’m NOT! I love all my kids. It’s just my youngest requires SO MUCH attention,that everything else,including myself get left behind. ((HUGS)) You are a fabulous mother. You have nothing but praise and love for your children!ReplyCancel

  • Christi - I was nearly in tears reading that. You are so amazing. Your commitment to your kids is so very touching. I would love to chat with you some time. I am very interested in getting my older son to a psycologist for some anxiety issues and control issues.ReplyCancel

  • Holly - Thank you, Rebecca, Amanda, and Christi. Amanda, thank you for sharing your story with me (and us). I didn’t realize Summer had autism, I just adore her. You are doing an amazing job and I hope the next med really works. Huge hugs. Christi, thank you. I just sent you an email with our psychologist’s contact info. Love you guys!!!ReplyCancel

  • jessica r - Holly I am in tears reading his words of advice, I think we can all learn something from that. From a 7 year old. Wow. Sounds like with a mom like you, anything will be possible for him.ReplyCancel

  • Claire Lane - You have such a caring soul Holly, always wanting to help others. It really shows in everything you do. And wow, how you must have missed that smile, wonderful to see it back I’m sure!ReplyCancel

  • Lauren - Oh, how I loved reading every single bit of this Holly. All the hard work you are ALL doing. What a moving post, and how so touching Dominic’s own words are. So compelling. And to finish with those gorgeous photos! Just perfect. What a brave warrior mama you are. xoReplyCancel

  • Jessica - Oh, Holly, I am so glad you are on a good road with your little man; he is so very lucky to have you as his Mama! He is just adorable and looks so sweet and HAPPY!!!!ReplyCancel

  • angela king - i just realized i hadn’t visited here in a while so i stopped by super quick half out of my chair at 11pm at night on my way to bed. i started reading and now by butt is firmly planted and i’m crying. my heart aches for you, your family and especially dominic. he’s such a handsome and sweet boy, it was his words that made me cry. i’m sure my bailey would have said the exact same thing.

    i have one picture that sums up that exact point that you’re talking about with photos. i can picture it so clearly in my head. i looked at it after taking it and said, wow. that’s totally him now. it made me sad. it did not however make me take him to a dr. i waited quite a few more years before i did that. i too felt that he didn’t need it. not my son.

    you my friend are not alone. i admire you for putting all of this out there to help other parents. you are amazing. 🙂

    big big hugs to you and your sweet boy!!!!!ReplyCancel

  • Mindy Ann - I wish I had more to say after reading your post. All I keep thinking after reading and looking at your great pictures of him is “I am so glad he is smiling again too!” You have such an intelligent, sweet kid. He is so lucky to have an amazing mom like you to get the help he needs and stand by his side during the process!ReplyCancel

  • Holly - I have been touched to the point of tears by your responses and stories. Thank you for taking the time to write and send me emails. It means so much to me. <3ReplyCancel

  • melody - You have to be the voice for your child…..and you are showing the world what a loud voice you have! You are a wonderful mother and I am so glad that you posted this!ReplyCancel

  • Rebekah - Sending you blog love for your courageous post. Your son in so handsome! Truly enjoy the photog shot looking above. Makes me wonder . . .ReplyCancel

  • Julie (Charlie's mum!) - Holly, I don’t know that I ever mentioned that my eldest, Abby has ADHD (and dyspraxia and dyslexia and edging round the ASD spectrum too!)

    Though she came first by 5 years, Charlie’s needs took precedence because like Anna, his are so much more in evidence. She was diagnosed at 6..she was a whirling dervish… and she was on medication for many years. Once we got the doses etc right, it WAS a magic bullet for her and I have absolutely no doubt that it has been crucial. Like Dominic, she was a very bright child.. and is a very able young woman.

    She has had to overcome immense challenges to get where she is today..and at just turned 20 has recently gone back on ADHD meds and is having psychological support at university as a heap of issues have made life for her very hard in recent times. BUT as a young adult she is determined that her ADHD etc are challenges that she can overcome.. and she is now in her second year at med school, which by anyone’s standards is a pretty good achievement!

    Dominic WILL do fine with you behind him. Like Abby he will have challenges but he will also rise to meet them.
    When Abby was small , our Paed once told her that she could achieve anything because people with ADHD have amazing brains.. Abby has never forgotten that comment 🙂ReplyCancel

  • Holly - Julie, ahhh… gosh, how I wish we lived closer! Thank you for sharing Abby’s story. I did not realize she has ADHD and other learning disorders. I’m so glad medication helped and will continue to help her. I will tell Dominic about the amazing brains bit, he’ll love that! 😉ReplyCancel

  • pam - I follow your blog for your photography, but as a special education teacher, I had to comment on this. Is he receiving services for gifted?ReplyCancel

  • Holly - Pam, yes he is! He is in the Talented and Gifted program at school.ReplyCancel

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