I thought I was due for a long Elusive Tranquility update. For those of you who are new to my site, my blog started as a parenting blog to share stories about Anna, my now 10-year old daughter, who has multiple special needs and I called my original blog Elusive Tranquility. Of course I also share stories about my oldest, Jenny, and my youngest, Dominic. It’s near the end of the year now and I don’t do a traditional Christmas letter (though I did manage to get cards done, woohoo!) so you’re getting a detailed update about the kids. Plus I mentioned in my Project 52 post that we got some surprising news about Dominic. If you just like looking at pretty pictures, you might want to skip this post.
I’ll start with Jenny. She turned 20 earlier this month and she has really matured into a capable young woman. She turned her 1.8 GPA into a 3.2 GPA this year and finished up her first semester of her sophomore year in college with 2 As, 3 Bs, and a C. I am really, really proud of her. Jenny and Chris are still going strong… 3.5 years now… and they still treat each other with respect, kindness, and love. They are an inspiration and role models, even for an old married couple like me and Curtis. She is working as a barista with Starbucks inside of Target and got named the Super Star Customer Service Associate of the month for November for the entire Target store. Did I mention how proud of her I was? I wish I could take some credit for how fantastic she is, but really she was born this awesome.
Anna is now 10 years old and in 4th grade in the FAC (Functional Academic Classroom) full-time with a Resource pull-out for reading. Quite a change from nearly full inclusion in 2nd grade. Our school district had a huge budget cut over last year and she was moved from her home campus this fall to a school that’s about 15 minutes away. It took nearly 6 weeks to get bus service so you can imagine being at two elementary schools at the same time twice a day was a pain. It’s been a bit challenging. Her class went from 6 students to 12 with no additional aides. It’s an overwhelming environment and Anna is one of the higher functioning kids in there and it really isn’t a perfect fit for her educational needs. There are simply no other options in our district at this time. Having her in FAC concerned us because we were worried she wouldn’t be challenged enough but it’s been adequate… her main teacher is wonderful and followed the class to the new school (as did two of the aides). We’ve only had a problem with the Resource teacher and at Anna’s next ARD (in January), I will be addressing my concerns. Anna is also due for her 3-year re-evaluation this spring and they have already started it. This includes a whole battery of tests and I’m curious to see how she does. The OT eval happened last week and they are recommending a reduction of services from direct to consultative saying that the support she is getting in FAC is adequate for daily living skills. This made me livid. How does she compare to her peers with fine motor skills and writing? It’s not good but because she’s in FAC, they lower the bar on expectations. It’s sad and depressing.
Anna’s health, emotional well-being, and behavior continue to baffle us. She has been having hearing problems with two separate hearing tests conducted several months apart showing moderate hearing loss with no clear cause. Our next step is a sedated ABR (evoked brain stem response) test and I should’ve had that scheduled already but I just can’t bring myself to putting her under anesthesia again. I’m sure the problem is brain-based like most of her other problems and there is probably nothing we can do about it like most of her other problems. She continues to have pretty significant fatigue also with no real cause. Many, many blood tests and specialists have been consulted and no one knows why she’s so tired. Over Thanksgiving, she got VERY excited to see Santa in the Macy’s parade and became obsessed. She was already having daily meltdowns in the early evening (about nothing in particular) but this put her of the top. She had 4-5 meltdowns a day about wanting to see Santa and about Christmas. And these were the full-out crying-like-she-was-being-tortured-wailing kind of meltdowns. It was awful and nearly impossible to distract her out of. We felt so badly for her. Returning to school after Thanksgiving proved equally challenging. She acted out the whole week and would not do any work. We saw her neurologist last week. She is 1/2″ shy of 5 feet tall and over 100 pounds… does anyone remember my tiny failure-to-thrive baby? She was never even on the chart until she was three years old! At age two, she weighed 20 pounds. Now look at her!
The neurologist scratched his head and said he didn’t know why she is still so tired. During the appointment last week, she laid her head down on me and nearly went to sleep. I mentioned her obsessions, the meltdowns, the challenges at school, and how the evenings at home are almost always difficult for her. So we’ve made a few changes to her meds… the Abilify (helps with anger and mood swings) was being given only at bedtime and now we are splitting it half at bed and half in the morning. She will continue to take her thyroid medicine in the morning 30 minutes prior to eating. Now here’s the big change… she’s been on Lexapro for a couple of years for anxiety but we are going to wean her off of that and have started her on Zoloft. Her neuro says Zoloft also controls anxiety and is better for OCD. I’m hoping (please please please) that it helps her brain to calm down. We’ve been telling her that her brain tricks her into thinking about the same thing over and over and she needs to learn to tell it to calm down. I think, however, that meltdowns are just part of the autism umbrella and as long as she is safe, she can cry in her room if she needs to. So I’ll keep you posted on the med changes and anything else that comes up. On a good note, it’s now been nearly 2.5 years since I’ve witnessed a seizure!
Okay… now onto my PIckle. Dominic is the main reason I wanted to write… why I NEEDED to write. For those of you who’ve been with me from long ago, you know that Dominic has always struggled with his behavior at school. He was asked to leave two preschool programs before we found one that could handle him. (And yes, I do question my skills as a parent over and over again. My kids are HARD.) We took him to see Anna’s neurologist when he was 4.5 because at his preschool, another little boy was being observed by the school district because he had ADHD and they asked the teacher if Dominic had been diagnosed or had a 504 plan for kindergarten. Ouch. I have to say this though… when you have a child with issues as complicated as Anna’s, you tend to minimize issues with your other children. Because, you see, you cannot have two children with special needs. It just can’t be. Well, the neuro said he looked very typical for ADHD, conducted some tests, and we did a short trial of mild, short-acting meds. Dominic did not react well; though he was very calm and focused during the day, when they wore off, he rebounded and got very hyper and couldn’t sleep. We still felt unsure about the ADHD diagnosis so we took him to a private psychologist who spent several sessions with him doing evaluations and assessments. She said definitively that he did not have ADHD but was very, very intelligent and very, very bored. She felt that with more stimulation and a good environment, his symptoms would disappear. She also noted that he had a fine motor delay and found written work laborious and challenging, and recommended that we start some OT to help. We did that and it did help, he got caught up by the end of kindergarten with his fine motor skills.
Kindergarten was challenging for Dominic. He wallered all over the floor during circle time, couldn’t keep his hands to himself, and would go into rages over the littlest things. His teacher was wonderful and so supportive. She helped him manage and we instituted the 5-point scale for helping him modulate his voice at school, with a 1 = whispering and a 5 = shouting. We could just hold up a 1 or 2 and Dominic would immediately quiet down. The 5-point scale works well for a variety of situations and I highly recommend picking up the book, The Incredible 5-Point Scale by Kari Dunn Buron. I also worked with Dominic at home acting out some scenarios such as cutting in line giving him options on how to respond. This type of role playing helped him learn some tools too.
First grade was a disaster. He was chosen for the Talented and Gifted Program and there was only one teacher with whom he could work. And they did not get along. At all. We were so dismayed by the notes home and how negative she was that we sought out a meeting at the 6-week mark offering some suggestions on how to help Dominic feel more successful and help him manage. It got better for about a month then deteriorated again after Thanksgiving. He got the point where he had stomach aches every day and cried about not wanting to go to school. He rarely got on the color green for his behavior and felt awful about himself. Near the end of the year, we witnessed the teacher chastising him, shaming him, in an assembly in front of the entire first grade. She didn’t know we were there. Curtis confronted her and plucked Dominic out of the crowd to get some cuddles. He was sobbing. We then filed a formal complaint.
Luckily this year, for the second grade, Dominic got Anna’s second grade teacher. She is seriously the BEST teacher I have ever met. She is the cluster teacher for the TAG students and the inclusion students. If anyone could help Dominic like school again, it would be her. We all had high hopes for the year, including Dominic. And for the most part, he has done very well at school so far. He has more good days than bad and the teacher tells us that he is always eager to learn and sweet and charming. Yet he continues to struggle with impulse control, overreacting, anger, and low self-esteem. He received an in-school suspension a couple of weeks ago for punching someone during boxing moves in PE and knocking a little girl down. He is always immediately remorseful and doesn’t even know why he behaves like this sometimes. During our last marriage counseling session, we talked with our therapist about him and she recommended we see a psychologist that specializes in ADD/ADHD. So I called him up and we lucked into a cancellation appointment the very next day. That appointment was last Thursday morning and we are still reeling.
He met with Dominic first, alone, for about 30 minutes, then met with us for about an hour. He looked over the previous psychologist’s report, took an extensive history (including going over the 28 page intake form I filled out the night before), and asked lots of questions. He said that though the assessments from our previous psychologist were correct, her conclusions were not.
Dominic does in fact have ADHD.
Plenty of kids get this diagnosis these days. Curtis is certain he has adult ADD. I’m not upset by the diagnosis but I’m sad for the challenges that Dominic faces and the stereotypes and judgments that the label brings. I’m confident that he will grow up and be successful.
Dominic is also indeed very, very intelligent. His IQ is somewhere in the 130 range and we will discover more about his strengths when he has more testing done on January 13th. The psychologist is going to do an entire day of tests including ADHD, IQ, and one other.
The other? This is what surprised us. I’ve been debating on whether to share this information. What I choose to share about my children is a delicate decision… I don’t want to share something that would later embarrass them. I don’t want to exploit them. My only reason for sharing is so that if any other parents have children similar to mine, they don’t feel so alone. This journey can be very lonely. But the other parents who have reached out to me have said that my words have been a lifeline. So many have helped me along the way that I want to return that however I can. I hope that makes sense.
So what’s the other issue? My son is depressed. Not just sad or mopey or acting out for attention. He has depression. And it is pretty severe. In children, especially boys, depression manifests as anger, being deeply self-critical, and feeling alone. There was more the doctor shared with us but out of respect to Dominic’s privacy, I will not share all of the details.
I think his ADHD makes things incredibly difficult for him at school. He is so impulsive that it pushes his peers away. He will do something goofy to get his friends to laugh and it works, so he takes it one step further and doesn’t realize when to stop. It makes him stand out. He overreacts to minor things causing his peers to see him as emotionally immature. He sees his friends able to control themselves and wonders why he can’t do the same. He is so smart. He sees the correct answer or the right way to do things and he blurts it out, or corrects someone. We’ve talked with him a lot about this and how no one likes being corrected. But he struggles.
So the plan moving forward is that he is going to start counseling with this psychologist for 12-15 sessions once a week starting in January. We are going to do a full day of assessments, evaluations, and tests on the 13th to get a clearer picture of his intelligence, his ADHD, and his depression. Early in February, we’ll meet to get the results and sometime in March, we’ll meet again to see if it’s time to see a psychiatrist to start on medication.
We kept him home from school the day of the appointment and gave him some extra special one-on-one time. He and Curtis made cookies together. I just want to wrap him up in my arms and never let go.
I’m mad that the first psychologist was so definitive that he did not have ADHD. I wonder if we had sought treatment before now if he would be so lost in the depression. But I’m very glad that we got this last minute cancelled appointment and that we didn’t wait or dismiss his issues. I can only imagine if he got to middle school grappling with years of these feelings what might happen. No. No, I can’t.