Saturday, June 18, 2011

Laying it all out

I am the mother of a child with Aspergers and a Mood Disorder Not Otherwise Specified (NOS).

I have hesitated to post anything about this. Thus far I have only shared this with family (so they can have medical history for their children), and close close friends. I have this rule where I don't post anything negative about my kids or my husband, even in frustration. I didn't want to post this because I was afraid it was painting my child in a negative light. Then I realized - I am treating this just like I fear so many others will treat him once they learn that he is different. It's not negative, it's nothing to be ashamed of, and I need to stop treating him as if something is "wrong" and accept that this is who he is.

I always knew Anthony was different. From the time he was born something was just abnormal. He never cried. I'm not saying he hardly cried. He literally didn't cry for the first time until he was three weeks old. We weren't sure he COULD cry until then. Even as a newborn he wasn't a fan of being held or cuddled. He was much more content being by himself. I remember wishing so hard when I was pregnant with Anastasia for a child who enjoyed being cuddled (and I surely got that with her!).

Around his first birthday we started noticing other things. He would bang his head as hard as he could anytime he got upset. If we restrained him he'd bang his head on US until we let him go and then he'd find the hardest surface and bang his head over and over until he felt better. His forehead was constantly bruised and I would tell his pediatrician who at one point recommended he be tested for Autism. The psychologist only sat with him once, declared he was too high functioning, and dismissed us.

Around this time my other friends children began side playing. Playing along side another toddler, not necessarily playing with them - but they would happily play with the same toy or in the same area. We were attending weekly playgroups and this was the first time someone else noticed something was different about him. The kids would all be playing in the same area, and way across the room Anthony would be playing by himself. If the kids came to where he was he would leave and find some where else to play. Anytime there was more than one child present Anthony would separate himself from the group and play alone.

We knew he was quite smart early on. Before his second birthday he had taught himself how to spell, and write his own name. By his first birthday he knew all his colors, how to count to 20, his shapes, letters, ect. We chalked it up to him being the oldest and therefore having 2 solid years of one on one attention from the both of us. However, once he began pre-k - in which he was by far the youngest student - we knew that his intelligence wasn't just something taught to him. His teacher was astonished on the first day and pulled us aside to tell us that he basically already could do all they'd ask of him that year. There were kids in his class who couldn't say the alphabet yet. Of course we were proud of him! However, it became apparent that what he made up for in intelligence he greatly lacked in other areas. He wasn't like the rest of the kids in his class. He seemed much younger, and although was chronologically younger than most of them, he seemed extremely younger. His maturity, or lack thereof, was extremely obvious. We laughed it off as he was a boy and everyone knows boys are more immature, and he was afterall nearly a year younger than some. I knew, though, that this was more than just that.

When my friends would come by with their boys, all of whom were younger by a year than Anthony, it became harder and harder to ignore. Others began pointing it out as well. He just seemed so much younger than everyone else. They also seemed more into age appropriate activities whereas Anthony (who had learned to read at this point) would spend all day reading the kid encyclopedias and repeating incessantly facts about his latest fascination. Or he'd find directions on how to build a certain thing and follow them to the "T". There was no imaginative play, thinking outside the box, or playing with toys in ways that were different. A block never became a phone, lego's were never used to build anything that there wasn't a direction for. He never played "house" or any of those other games that children play. Playdates were always followed by major meltdowns as well.

Starting around the end of his third year were the morbid thoughts. Horrible morbid thoughts that you never would expect out of a three-going-on-four year old. He'd be perfectly content one moment and the next he'd be crying and screaming. When asked what was wrong he'd tell us some long tale about what he didn't want to happen, such as "I don't want a bad man coming through my window at night and cutting off my head" (this was an actual fear of his that came out numerous times). We couldn't figure out where they were coming from! We never let him watch gruesome TV, he was only allowed to watch Noggin or PBS. He wasn't reading anything that would give him nightmares. He loved to read but we kept him from the grown up books anyway. Without fail these thoughts would crop up a few times a week and we were left trying to calm down a child and explain to him how illogical that was. These moments I felt as if my heart would break, but I was also so angry. WHY can't he just see how those thoughts didn't make sense?! Why weren't the doctors taking us seriously? His pediatrician just kept telling us to tell him those thoughts were illogical, but it didn't seem to do any good. It didn't feel right, either. He was legitimately terrified, and didn't know why. His monsters lived in his head.

In Kindergarten his social awkwardness became so bad he began to get badly bullied. He also stopped doing his schoolwork, which resulted in loss of recess and center time - which further alienated him from his peers. Shortly after the school year began his teacher, whom we had requested, went on maternity leave. Her replacement was awful but as his real teacher was supposed to return after Holiday break we endured it. However, she decided to not return and so the substitute stayed on. The bullying got worse and so we met with the teacher to discuss our concerns. She was no help. She claimed Anthony brought it upon himself for not acting normal and if he would just act normal he'd be fine. She refused to give him harder work to do saying that it wasn't fair to the other kids that he was so above them. I should have given her an ear full, but I'm ashamed to say I didn't stand up for my child the way he needed me to. Instead we decided to homeschool him.

Homeschooling did well but we noticed he was drifting further and further away from the social skills he desperately needed to learn. His pediatrician finally took us seriously after he had a meltdown that lasted over four hours that we nearly had to have him hospitalized for. One of my scariest days as a parent was watching my five year old trying to hurt himself, and my husband having to restrain him. Anthony was hyperventilating, he looked absolutely terrified, and I could tell he wasn't really with us. I was looking up numbers for adolescent wards, and crying myself because I was so scared for him. We finally got him settled down and he spent the next few days in a manic state - hardly sleeping and pouring through a stack of books his size that he "had to get through". His therapist recommended we send him back to public school so that he could gain more social skills, so we did after Holiday Break. His new school is wonderful and he hasn't been bullied at all. He still doesn't have many friends, but everyone is nice to him anyway. He still has numerous meltdowns, nearly one a day at least. He's only had two serious meltdowns that had us worried about him being hospitalized since that one though.

A month or so ago, after being in therapy for 6 months, his therapist decided to have further testing done on him. This was for social IQ and intellectual IQ. As expected, his intelligence scores were in the 99% and above. For nonverbal memory and spelling he scored in the above range but not as high which they believe means he has a nonverbal block of some sort. Once they get everything else under control they believe these scores will shoot up to the 99% and above as well.

He is basically in a state of crisis because his emotions are so out of whack. It also came out in the testing that he hears voices that aren't there. This made me feel as if I got punched in the stomach. They don't believe his has schizophrenia yet, or bipolar disorder, but they do believe he has something which is why they diagnosed with him with Mood Disorder NOS. His therapist believes it is more along the lines of "Emotional Regulation Disorder" so we shall wait and see what further testing and therapy reveals. He was also diagnosed with Aspergers. This isn't something I'm terribly surprised about, given the fact that Autism was tossed around when he was younger, but I'm still in denial about it. I need to get over this, but I have a hard time accepting that my son has something that isn't fixable. Thats partly why I'm posting this. This is who he is. He is Anthony, an amazing gifted boy who loves superhereos and reading. He has quirks and he sees the world differently but that doesn't make him WRONG. I guess, having the labels of Aspergers and Mood Disorder, it's saying that there is something wrong with him. It makes it hard for me because both of those define so much of who he is and yet they are issues that have to be dealt with through therapy and other treatments. I'm having a hard time separating that from saying that who my son is is wrong.

Along with his therapy, Chris and I will be in therapy to learn how to handle all of this. They believe that his IQ is high enough that he can teach himself how to respond appropriately, and which emotions are used when. At the end of it all, regardless of what he teaches himself, he will always have Aspergers. So I guess this blog will also follow the life of a mother learning to accept that and deal with it.

This blog has so many paths, it feels as chaotic as my actual life.


  1. Hey Beth I wanted to add some thoughts for books to read, that I suggest to all parents but especially when working with children who need emotion regulation.

    Daniel Goleman writes about Emotion Coaching and increasing Emotional Intelligence in children and I highly highly recommend his work. Dr Gottman, who does some of the most highly valued emotional marriage research, also writes about Emotion Coaching.

    It fits very nicely with AP by the way. So it should feel very natural, in the face of feeling like you have to "change" so much right now. Instead of tons of change, just enhancing something you already naturally do. That is less stressful for all involved, and for Anthony it won't seem like something brand new from his parents.

    Emotion Coaching for Autism Spectrum Disorders

    Berkley has some info

    One of the books:

  2. Beth, I usually read you through the JM blogs (I'm an editor over there), but I didn't want to wait to reach out to you there. I wanted to offer some support and love to you. My son has PDD-NOS ... a toddler diagnosis for "some kind of autism but we aren't sure what yet" ... along with some other special needs. I feel you, completely. It took me a LONG time to get over the initial kick in the gut of "there's something wrong with my son," and some days I still fall into it. It's hard to keep focus on the fact that he is the same kid today as he was last month. I think this will open up some doors for you and help you help him - which is fabulous.

    There will always be good days and bad days. Just know you aren't alone, and you will somehow make it through! I'm glad you're opening up about it; I've found writing in my blog has been very therapeutic for myself, and I've met a number of parents who have been helped by reading it all - and professionals who've said they read to learn a more parent perspective to help them service their families.

    I wanted to share this book, too. I read it a while ago and I thought it was one of those honest, personal stories that can help. It was co-written by 2 parents with special needs kids, one with Aspergers and one with bipolar disorder, both kids in their teens now.

    Thinking of you so much!

  3. Beth, if you ever need to talk about Asperger's stuff, call me or email me. Maddie was diagnosed with t in March. It didn't surprise me, either. We went through the same thing with drs telling us she was fine, just "different". It finally took her having a bitch of a teacher and her being so depressed we didn't know what to do to get her to a therapist who could help. We're navigating the Aspie world now. There's a really good book for kids that might help Anthony called "This Is Asperger's". I alo highly recommend books by Tony Atwood. I know you know this, but it's not the end of the world. I actually felt a TON of relief when Maddie was diagnosed. I knew *I* wasn't crazy for knowing there was something wrong!

  4. Beth, as I read your blog I started crying. I identify with so much of your story. I am 30 now, but I still remember how hard it was to grow up with bipolar, OCD, and severe social anxiety. Your son is so fortunate to have a family who cares so much.

    Keep educating yourself on these disorders; never ever, stop learning about them because we find out more about the brain all the time. I highly recommend NAMI, too. They are great and have a class especially for parents of young children with mental illness. It may help to meet other parents going through the same thing. There is a list of NAMI programs on their website at

    I volunteered there four years, I don't want to sound like a "NAMI ad" or something, because I'm not. I just am trying to help. You and your husband are good parents, I've read your blog a long time, and I know you guys love him so much. He is so very lucky to have parents like that-so many people don't grow up with that.