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Friday, July 12, 2013

Neuropsych Results

This past week, Alex and I got the results from Ben, Jonah, and Aidan's neuropsychological testing. It was three and a half hours of intense information. Most of which was nothing new. Most of which we already knew. But there were some surprises, which made me glad we had done the testing now instead of waiting.

Aidan does not have auditory processing disorder. That was a question that had been plaguing me, and I'm grateful to have the answer to that. He does, however, have ADHD- Inattentive Type. No surprise. When you have Tourette Syndrome, ADHD usually comes along for the ride. The thing that did surprise us was the level of Aidan's anxiety. He qualifies for the diagnosis of generalized anxiety disorder. His anxiety affects him in many, many areas of life, every single day. And apparently it is not being managed effectively yet, so we have some work to do to make life more enjoyable for our youngest boy. The doctor said this was her biggest concern regarding Aidan, the level of his anxiety.

Benjamin's diagnoses stayed the same, ADHD- Combined Type (which means he's sometimes impulsive and distracted, and also sometimes hyperactive), Tourette Syndrome, Dysgraphia (which is a disability involving the fine motor skills needed for writing), Sensory Processing Disorder, etc. The doctor said he still qualifies for the Bipolar Disorder diagnosis, but it could be said that his Bipolar is in remission since we have the intense rages much more under control. I like that word, "remission." It's a hopeful word; it makes me think that things will only continue to get better from here. And that hopefully we will never, ever, ever go back to having to deal with multiple rages every day. 

One thing that was a big surprise about Ben's test results was that he has a learning disability in math. There are several areas of mathematics that he is significantly behind on and needs an IEP at school to help him deal with this. That was amazing. I am so amazed by his ability to cope with his weaknesses in a way that makes the world think he is just fine. Struggling, but fine. The doctor said that all the boys are amazing at using their strengths as a way of coping with their weaknesses. They all have incredible visual and verbal IQ's, so they use that to compensate for their extremely weak areas, like Ben's math skills.

Jonah still has many of the same diagnoses as before also. He has the diagnoses of Tourette's, ADHD- Inattentive Type, Dysgraphia, Sensory Processing Disorder. His diagnosis of Bipolar Disorder has been taken away. His symptoms have led to a new diagnosis of generalized anxiety disorder with depressive symptoms. AND, he ALSO has a math learning disability! Those two brains are so similar! Jonah's struggles lie mostly in one area of math, but according to the doctor, he would still qualify for an IEP to address these challenging areas. 

The doctor said what likable, sweet boys we have, and that if she hadn't gotten the background info on all the diagnoses the boys carry, she wouldn't have known they had so many challenges when she first met them. She said that is a testimony to how hard Alex and I have worked to give the boys as many interventions and coping skills as possible. I said it's also been a detriment to getting the boys interventions. It's taken a lot longer to convince the world that our boys have significant challenges across many areas because they appear to be fine if you don't really know them well. The doctor said she hadn't thought of that. 

The doctor also said she had been nervous when she got our information- three siblings, all with a lot of complicated diagnoses, all to be tested within two weeks. She thought "Who agreed to THIS?!?" She admitted thinking that some parents are hypochondriacs, obtaining diagnoses whether they are accurate or not, so there was probably a strong possibility that our boys did not have all the special needs we thought they did.

Then the doctor admitted we were right- that they did in fact have accurate diagnoses coming in to testing, that she can tell their medications had been very carefully thought-out, and that she didn't know how we deal with everything we deal with and keep up with it all.

There was so much much more we discussed during our meeting, but those are the highlights. We had many questions answered. We had many worries put to rest, and some worries were validated. I cannot fathom how Ben and Jonah made it through 5th grade, both having significant learning disabilities in math. It was such a struggle this year for all the boys at school, but many times I thought it could be for reasons other than the fact that they may have learning disabilities. I usually blamed myself- I haven't spent the time teaching them how to type yet. Apparently I haven't spent enough time practicing math facts with them, because they are still completely inept in that area no matter how hard they work at it. But now a doctor has told me that it's not my fault. It's just how the boys' brains work. I'm trying to process that and believe it. 

The doctor said that we are on her list of top five families she's loved to work with. Ever. How touching is that!?! (I thought about asking why we weren't on the list of top THREE families she's ever worked with, but thought that might decrease our likeability and make me seem like an obsessive overachiever and perfectionist. And show her that I'm slightly neurotic.) She said our counselors who work with the boys every week had very kind things to say about us. She said that given the boys' rough start to life, and their complicated, significant diagnoses, they are doing simply amazingly well. She said that's because of the work Alex and I do with them. She said she can't think of any other family who could handle our challenges this well. She said that one child with one of these diagnoses could derail a family, and our family is functioning and, in fact, thriving. She laughed because we know our kids so well, that during our intake interviews, Alex and I discussed how one of the twins has a tic where he snorts out, and the other twin has a tic where he snorts in while he inhales. She said the laid-back, resilient atmosphere of our parenting has enable the boys to thrive. I didn't cry through the whole thing until she started saying such nice things.

And I don't write all these glowing remarks in order to boast or gloat or get a pat on the back. I write them first of all, to try to believe them myself. And second of all, to show other families that all the therapies, medicines, doctor visits, psychiatrist visits, chiropractic appointments, massage appointments, school meetings, sleepless nights, reward charts, diet changes, essential oils, vitamins, probiotics, schedules...it's all worth it. Because if you can help your kid succeed even a little more with one of these things, or all of them, you've made a world of difference in his life. It's crazy to look at all we've done for our kids and realize that it has actually helped them. 

The doctor said that we need to start teaching the boys about how these diagnoses are life-long. They will always struggle with these things. And there are coping skills they will need in order to succeed on their own in life. She said to start thinking of things like getting Jonah and Ben phones to program alerts for things like when to take their medications. Or get dressed in the morning. Or when it's a therapy day. Or to come home when they're out riding bikes with friends. She said that we're right in letting a lot of things go (like frequency of showers or teeth brushing- which drives me insane) and picking our battles carefully. 

The doctor's report is full of recommendations for the school about ways to help the boys. So my first order of business after our meeting was to ship off an email to the director of special education in our district, who fortunately or unfortunately, knows me already. I wanted to give her a heads up that we will need an IEP meeting in the Fall for both Jonah and Ben. Jonah was already going to have one to see if he can qualify for an IEP under the category of Mental Health, given his extreme anxiety and school avoidance. So we'll just add "Learning Disability in Math" to that laundry list. But now I know Ben will also need an IEP meeting due to his own learning disability. The boys also need things like study skills training, organizational training, different things like this that will help them learn to be more successful and independent.

I was thinking about it the other day, mulling all this over and trying to wrap my brain around everything. I thought about how there's always a big discussion about whether to label your children or not. Many parents I know are afraid for their child to have a label, thinking this will bring on negative consequences and reactions. I understand that perspective. You always want to protect your child in any way possible. In our experience, however, accurately labeling our children with their diagnoses has opened up a world of services to them. It has slowly brought understanding, also, as we continue to learn, and educate the people in our lives, about the boys' needs. 

I realized this week that whether my boys have labels, official diagnoses, or not, they are who they are. A label doesn't change that. Benjamin was Benjamin before his neuropsych testing, and he had a learning disability before the testing too. I just didn't know it. Now that I know it, I can advocate even more effectively for him at school, and in the world at large. Knowing your kids struggle, and will struggle forever, is really hard. But Alex and I have always said we'd rather know everything, even the hard stuff, so we can get our kids the help they need. Yes, it's probably easier in some ways to put your head in the sand and not search for answers that you know will be challenging. But in the long run, what we've chosen to do is just get as much knowledge as we can and go from there. 

We got a lot of information from the neuropsych testing, and I feel like we were given some direction about how to move forward. Most things we do at home will not change, but things at school must change. The boys need a lot more support in order to succeed, and I'm prepared to help bring that about. So far, we've always had a great team of educators working together with our family to try and give the boys everything they really need to be successful at school. I'm a little nervous about all the new information I have now that I have to advocate about with school, but you know me. I'm up for any challenge where my kids are concerned. 

The journey is far from over. The struggles are still very challenging every day: irritability, mood problems, impulsivity, defiance, sleeplessness, lack of cooperation or follow-through, aggression, disorganization, depression, anxiety about everything under the sun, sensory issues that impact all our activities...but just to look at our path so far and take a moment to breathe and tell ourselves that we've done the best we can for our kids and it is paying off, that's an achievement. I'm grateful for more knowledge about my boys. I am grateful for the beautiful, resilient, strong spirits that they are. I am grateful for all the people who support us every single day. I am grateful for the love and understanding we feel from so many different corners of the world. All this gives me the hope and courage to keep putting one foot in front of the other and continue the journey.

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