Alphabet soup…it’s the term some people use to describe a situation where there are multiple diagnoses and their acronyms can begin to sound a bit like a strange rendition of the alphabet. It is not uncommon for a person to receive more than one diagnosis because there are some things that tend to have secondary diagnoses or put a person more at risk for having or developing other things.
When you are a parent, receiving a diagnosis for your child can bring about a variety of different emotions, everything from relief to devastation. When that same child receives another diagnosis, the same emotions can occur or be even more intense.
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I know that there are those (who are not the parents of special needs children) who may assume that each diagnosis becomes easier as we somehow get used to or are more prepared for, hearing those words again. I cannot speak for all parents, but I know for myself, it actually gets harder with each new diagnosis.
There are several reasons for this. I sometimes feel that my child has so many other obstacles to overcome that one more doesn’t seem like it’s fair (I know, as I tell my kids, fair is an “f” word and shouldn’t be used – but as a mom watching my child who struggles so much already and knowing there are further obstacles ahead, the word escapes my mouth). I also worry about another new thing for us to learn about and about the additional appointments and specialists to get to know and how all of that will impact not only the child affected, but the other kids in our family. And let’s face it, there’s only one of me and I’m already stretched pretty thin, to I also think about myself and my time and how it will affect me.
We are a special needs family. We have seven children and five of them have special needs. Of the special needs in our home, these are what is represented:
- Aspergers
- RAD
- FASD
- PTSD
- SPD
- sensory issues
- cognitive delays
- developmental delays
- speech delays
- ADD/ADHD
- anxiety disorder
- subtractive bilingualism
- progressive hearing loss
For some of our kids, a new diagnosis on top of the one or several they already had wasn’t a big surprise. FASD increases the chances of both ADD/ADHD and SPD and it is not at all uncommon for those with Aspergers to have SPD as well. Time spent in orphanages also increases the risk of SPD, so it honestly came as no real surprise that we had so many kids with sensory needs.
When our daughter Miss Optimism was diagnosed with SPD, I hadn’t even heard of it. It was before sensory issues were being discussed in mainstream parenting and I was new to all of it. Last week I wrote about how her diagnosis helped us to unravel the mystery of why she wanted to wear tight fitting clothing. It helped us unravel several other mysteries as well such as why she picked holes in her brightly painted walls or spun herself in circles constantly. By the time we received the SPD diagnosis for many of them, I was already well versed in sensory lingo and felt fairly confident that I could help them to meet their sensory needs.
This year, we have received 3 new diagnoses for 2 of our kids and even though you might think that by now, I’m old hat at this and should be less affected, I was fairly devastated. As I’m unfortunately a bit of an expert at this, here is my advice for parents who receive a new diagnosis for their child:
Take time to grieve.
Tell others around you what you need and how they can help.
Take care of yourself.
Remember that your child is the same child they were before there was another label put on them.
When you are ready, begin to build yourself a support network within the new community. Join a support group if possible for parents who have children with that diagnosis. If you can’t find one locally, you will be able to find one online and those can be a wealth of information.
When you are ready, arm yourself with information so that you can advocate for your child and help them to reach their fullest possible potential.
You may feel that you have already grieved and then encounter a circumstance that requires you to grieve all over again. That’s ok and normal.
Coping with another diagnosis for your child takes time to adjust to. Eventually, you will live in that “new normal” and the pain that you are feeling right now will not be as acute, but when you first hear those words, even if they are words you were expecting and had thought you had prepared yourself for, it can feel like the bottom has come out from under you.
Hang in there…I can tell you from experience that the world will right itself again. You will get to a place where you discover that this diagnosis comes with some blessings as well as challenges. Your family will get through this. You will get through this.
For today, just breathe.
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