Tag: moods

Down syndrome PLUS other challenges, like mental health

I’ve already blogged about having an adult daughter with Down syndrome and how that’s so much different from having a younger child with DS. It’s tougher in many ways: the gap between that child and your other non-DS kids, in addition to the gap between that child and most everyone else, is so much wider than it was when they were little. You’re used to the different life, sure, but there are still plenty of times you’re reminded how things would be if that child didn’t have DS. As your other children become adults or older teens, that gap is starker.

What also makes life more … eh, interesting … is when that child has other challenges on top of all that DS does. We as a family have been so blessed that our daughter, unlike about half of people with DS, never had heart problems. She didn’t require surgery. I have always been appreciative of that. For us, however, what’s been tough has been my daughter’s emotional health challenges. I’ve blogged lots about my own mental health, so look at all that for what I’ve experienced personally. Marissa has exhibited a lot of mood swings and meltdowns for probably about five years, and those have gotten so much more frequent and intense the past six months or year. Over a few years, the doctor and I have tried Prozac on her to see if that could help her feel a little less out of control, but it hasn’t helped. Now, however, with her just having such a hard time, I’ve been trying to figure out just what we can do from here.

Here’s the thing: I’ve already written about how difficult it can be to find a good mental health provider, particularly a medical doctor — psychiatrist — who specializes in these things. It’s hard for EVERYONE who finds themselves in need of a psychiatrist. There simply aren’t enough to address the need. That’s particularly the case in smaller communities or other underserved populations. And it’s a tragedy.

Add that to the difficulty of finding someone who has the extra skill to work well with someone with a learning disability, for whom it is much more difficult to understand and express the nuances of things they’re feeling, and the challenge can be overwhelming.

I’ve felt overwhelmed by various emotions: frustration, sadness, some anger, helplessness, inadequacy … the list goes on. I feel bad for my daughter because I know from personal experience (years of it!) how it is to feel so taken over by your emotions. I also know it must be particularly confusing and scary and sad for her. But then when it just goes on and on, day after day, and the things I try to do just don’t seem to help much, I feel frustrated and angry and depleted and just ready for it to STOP. For at least a little while.

I took her back to her regular physician a few weeks ago, in desperation, hoping that he and I might be able to come up with something to help. Just a start. I told him what I’ve struggled with personally and what medications have now helped me for the past two or three years. I told him how few resources there are. I told him, “I know this isn’t really in your wheelhouse, but…” Luckily, he is a good and kind man who is happy to listen and consider ideas and research them, and I trust him to do what he can. He said he’d look into some things and get back to me.

Meanwhile, I had my own check-in with my psychiatrist (well, she’s technically a nurse practitioner who specializes in psychiatry and she is FANTASTIC), who is at a clinic an hour away from here (and that my insurance doesn’t cover, so I pay out of pocket for each visit: $100 each time I have a check-in). I told her about my daughter and asked for some ideas. I felt it was the best option for M to go to this place, since I know they’re good and they specialize in this. But I was thinking they weren’t taking new patients, which wouldn’t help me at all. Luckily, I had taken her there maybe five years ago, when she wasn’t doing too badly, so I was able to get her in again. She has an appointment in two weeks.

Meanwhile, she is having blow-ups and meltdowns multiple times a day, sometimes, and it’s a strain on me and especially on her youngest sister. I’m just holding on until that appointment. And even then, these things take time. It’s going to be more of a challenge to help her than to just be the patient myself (that is tricky enough, believe me).

I am aware often of the multiple challenges people face. Children and adults with DS, like anyone else, have various needs and overlapping issues. It can just make it that much harder to deal with each of those things. I have such sympathy for the individuals with DS who have these needs, and I definitely understand the needs and feelings of their parents and families. Each of us is going through a unique mix of trials and challenges, and many of us go through those without others realizing. My daughter’s DS is obvious to others. What is not obvious is all the other things we are dealing with. My girl is such a sweetie and so loving and outgoing and friendly and happy, and that’s what most people see. They don’t witness the meltdowns and the moods. That’s reserved just for me and mine (yay! ha). Today, I share this to help others see what happens behind our doors some days, and so others in a similar situation as we are can perhaps find something to latch onto and know that I get it. I feel ya.

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She’s high and she’s low. Most people see this. I love this face. I love her all the time. But all the complexities and challenges can be exhausting.

Special needs AND adolescence? Whoa.

I’ve mentioned a few times I have a daughter with Down syndrome. She has been an utter delight in so many ways, and such a blessing to our family. She smiles and hugs and just shines like the sun around pretty much everyone. She’s silly and goofy and has a great time with everything. She was even an “easy” baby, just so content to sit and observe and smile (a relief after my first baby, who was very demanding and had to be held ALL THE TIME).

Yeah, I had an adjustment period getting used to the idea of having a child with a mental disability. Luckily, I was able to absorb that information before she was even born, thanks to a blood screening test and then an amniocentesis. It is a shock; it’s scary; it’s unnerving. It’s not something you ever expect will happen to you. It changes things. But I came to terms with the new emotions and fears and uncertainties and just embraced the sweet daughter I got.

Honestly, even though for the first few years of her life, she was slower in her development than other kids (and than my first), and she needed special early-intervention services, it wasn’t often I thought that it was just that much different than raising my older daughter. It was mostly just a minor adjustment in expectations and in schedule, sometimes. I thought, “you know, this isn’t too bad. She’s not really different from other kids.” And honestly, she still isn’t.

But as she’s gotten older and is now a teenager, so much has changed. As time has marched forward further and further, it’s become clear just HOW much behind other kids she is, at least in terms of what she is learning (reading is great; comprehension is still not as great; and math? ARGH), and how much younger she really acts than other kids. When your child is only 6 and has lags in development and seems more like a 3- or 4-year-old, compared to other 6-year-olds, it’s still not a big difference. But when she’s now 14 and acts like and has the grade level, basically, of a 7-year-old, that gap is much bigger. It’s a gaping chasm that is obvious to everyone.

I was getting accustomed to that growing distance in development as well. But now she has hit puberty and has started menstruating, and man, that is a whole other story. My 10-year-old, who is bright and intensely curious and conscientious, learned about the whole “female thing” last year and asked me with great concern, “Mom, have you told Marissa about this? ‘Cause she’s going to start this soon.” I replied, “You’re right, kiddo. But how would I explain this to her ahead of time? Would she really understand? How would she react?” I thought it would be easiest to just catch her when it first happened and do a very simple explanation. She was fine with it, too, for a few months, happy to be like a “young woman,” like her older sister and mom.

rainBut then the hormones seemed to kick in. Now she’s been moody and sometimes snappish, completely out of nowhere. She will burst into tears like a sudden cloudburst. I thought it was probably just PMS, as in “pre-” menstrual, but now it happens whenever. Her teacher called today to let me know she’s been bursting into tears in class sometimes too.

It’s so much easier to explain the how and, especially, the “why” of hormones and moods and all that female stuff to a young woman who understands the nuances and can do a little better at looking inward and analyzing a bit and piecing things together. But I fear those kinds of things are lost on my second child. So it just breaks my heart to see her going through these moods and having no idea why she feels so sad all of a sudden.

Nope, this is a lot trickier than just making sure my toddler is learning to walk properly or hold a pencil well so she can write. Those were walks in the park. Now, life is much more complicated. But isn’t that always the case?