Are You an Alphabet Soup Mom? Getting Beyond Labels

Just the other day, I was trying to explain to someone that we parents of special needs kids are, more often than not, dealing with an alphabet soup of diagnoses. It starts with one set of letters, disconnected from your actual child: EI (early intervention), OT (the occupational therapist who evaluates him as part of his EI evaluation)—or perhaps PT (physical therapist), or SLP (speech language pathologist). Then you get your IFSP which will later turn into an IEP and your alphabet diagnoses: SPD, ADHD, PDD-NOS, maybe FAS, RAD, ODD, OCD,  perhaps the CCC and the WPA and…oops, those are the New Deal programs of president FDR!

 

I think one of the hardest things in the beginning is to accept is that your child’s loveable quirks are now being pathologized: treated as problems, or symptoms of disorders, disabilities, and dysfunctions, and reduced to labels. Why is it a problem that my son doesn’t hold a crayon well at 27 months? He doesn’t like coloring. So what? Why are you grilling me about how he responds to being toweled off after a shower? So he hugs me hard. He’s a sweet and affectionate toddler! “Well, we think he has SID.”

 

And so, the stack of  soup labels begins to accumulate. For us, there were a lot of actual words rather than letters: One was apraxia, also known as dyspraxia, oral apraxia, verbal dyspraxia, global dyspraxia—it’s important to have as many terms as possible to make mom and dad’s eyes glaze over and keep them doing internet searches til the wee hours—damn it, what keyword will get me to the information I need?!! We also got SPD, which at the time was SID or DSI or maybe SI dysfunction, not to be confused with Semantic Pragmatic Disorder or Semantic Pragmatic Language Disorder which is sort of like autism in that it involves language pragmatics…. I never did quite understand that but I think it didn’t apply even though the SLP said there were pragmatics issues. .. . And of course, it was SID, not SIDS, which is Sudden Infant Death Syndrome.

 

Pass the Ibuprofen.

 

OK, so what else was on the IFSP (individualized family service plan) that would turn into an IEP when he aged out of EI (grew too old for the early intervention program and got an individualized education plan through the school district)? Fine motor delay—they picked that up. Receptive and expressive language processing disorders. Wait—were those disorders, or delays? I wrestled with that one for a long time and finally concluded that apraxia can’t fairly be called a delay. When a later talker finally can string a sentence together and points to his leg and says, “This is my blood song,” I’ll change my mind (translation: “blood stream.” Even at 4, my son was fascinated by the inner workings of the body, and with his word retrieval issues, “stream” became “song”). When does a delay become a disability, and when does a disability become a difference society needs to accept and stop trying to fix?

 

Once you get your cluster of labels, you find they change, or no longer fit. Fun, fun, fun! And then, when your little one begins school, you have to figure out what little boxes to check on the IEP to cover all your child’s issues. Speech Impaired—okay, that works for a language disability. But where does SPD get acknowledged? OHI. Other health impaired. Welcome to the school’s own alphabet soup!

 

It’s so hard when you think you have a handle on “what’s wrong with my child” then you get another soup label pasted onto him and his ever-thickening file, but it’s part of being a special needs parent. You have to remember that underneath it all, your kid is a unique person with his own set of qualities, and aspects of himself that can delight you one day and drive you crazy the next. You need the labels to get services, and you hope that people don’t scoff at your labels and your outsider’s evaluations and secretly think, “Yeah, I’ll tell you what’s really wrong with that kid. A lack of discipline!” Ah yes, the old “bad child, bad parent” diagnosis. This is not a medical or school diagnosis, or a functional diagnosis that a therapist issues. Apparently, any stranger on the street is qualified to issue this diagnosis, and the larger the crowd of onlookers, and the more stressed out you and your child are, the more likely it is that you’ll receive the “bad child, bad parent” diagnosis from some passerby.

 

Labels lead to services at school, and more labels such as OHI. Despite the alphabet soup, kids are still kids.

The upside to all of this craziness is we special needs moms just plain old “get” each other, don’t we? We’ve been there, done that. IEP meeting today? I don’t have to know your child’s diagnosis. I know you’re going to need some emotional support and a pep talk from the rest of us today! Did someone really say to you, “Are you sure it’s not just…behavioral?” I share your primal scream!

 

Being a mom of a kid with labels has another upside. It’s made me become more educated and more curious about other disabilities which helps me to help others. Sometimes, I can’t believe how much I know about autism for someone whose child doesn’t have autism. For years, I’ve been fascinated by the overlap between his symptoms and the symptoms of kids with Asperger’s. Let’s talk about the vacuuming thing… I get that. And the puzzle thing, and the Thomas the Tank Engine thing! And the concrete language thing, the repeating of lines from movies…yep, yep, yep.  Let’s talk giftedness and 2E.  I learn SO much by osmosis when chatting with the SPD moms whose kids are also on the spectrum. Lately, I’ve been learning more about FAS and RAD from another mom, and know that someday I’ll be passing along some ideas and insights to a mom who is dealing with ADHD and bipolar disorder but thinking maybe there there’s RAD going on.

 

Some call us warrior moms but I don’t always feel like fighting, or it seems counterproductive Sometimes, my greatest strength is in being creative, or doing research, or observing, or just forgetting it all and enjoying my child. Maybe we’re the alphabet soup parents, enjoying the richness of our experience, noticing how all the conditions blend together in the bowl but sometimes catch your eye when you dig a spoon in and focus on one or two.

 

How about you? Are you an alphabet soup mom? Have you ever passed along information about a disorder your child doesn’t have but you’ve learned about from another alphabet soup parent?

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16 Comments

Filed under diagnoses, IEP, labels, OT, prognosis for kids with SPD, sensory integration dysfunction, sensory processing disorder, sensory processing disorder diagnosis, sensory processing disorder symptoms

16 responses to “Are You an Alphabet Soup Mom? Getting Beyond Labels

  1. Kim

    Amazing blog, thank you!!!! So very true! My son has SPD, ASD has been ruled out for now but I feel I know a lot about both!!! Does your child just have SPD? Curious about repeating lines from movies and Thomas the train. My boy loves Thomas and does a lit of repeating….haven’t figured out the repeating yet. Is it an auditory thing?
    Thank you!!

    • He has SPD and a language processing difference, as I like to call it–he had verbal dyspraxia as a child, and word retrieval/auditory processing/auditory sequencing issues. Suffice it to say he thinks first in pictures, then in language–and in our society, that’s a “disability” instead of a gift (Temple Grandin has written on this). Repeating lines from movies or videos can be the way these kids express themselves. Echolalia is repeating words just heard–my son had a problem with this when he was 2 but when we began putting flax seed oil, full of omega-3s, in his juice, it disappeared. I suspect echolalia and repeating lines they’ve heard both have to do with auditory memory–maybe a way of compensating for the challenge in following novel conversations and dialogue? It’s a good question!

  2. CarolSue

    Great post. My daughter has SM (selective mutism) which is not on the autism spectrum, but has alot of common symptoms. The jargon, the unbelievers, the defense of my child and myself, the education that has to be done on the spot and at odd locations (parking lots, offices, stores, grandparent’s homes, etc..) I understand all of it. I am definetly an Alphabet Mom. Ugghhhh….

  3. Wow. It’s like you were reading my mind. Thanks for sharing your struggles. I wish I wasn’t so overwhelmed. My 6 year old son has a definite speech disorder, anxiety and SPD. I suspect he also would qualify for ADHD and PDD-NOS, but I have to get him re-evaluated because the autism assessment he had when he was 3 didn’t earn him a title, since he was too social.

  4. Jonathan Taylor

    You’re speakin’ my language! I’m ADHD with a ASD son and an ADHD son. We’ve had enough IEP’s to be LIS.

  5. this summarizes how I have felt and feel at different intervals. What began as mourning or frustration with not knowing, or even blaming…has now made me more compassionate & understanding that people like my daughter have a bit more color at times. Grasping crayons, making friends, etc are more difficult, but when I focus on what she doesn’t have than those are the days I become a yuck mom. I love knowing these labels & this experience, because as you wrote how it weaves us to understand other parents & their children so much better.

  6. Wonderful article that I can only relate too much to. SID that is now called SPD; SLP that lead us to OT and EI and the IFSP and then the IEP. Then a school PT turned us onto VT. Phew! After so many years on focusing on what’s wrong and what doesn’t work right I happened upon a local intuitive who totally turned me around when it comes to how I see my son. She told me about how amazingly intuitive he is (and a lot of these kids are). He is gifted in ways his school will never appreciate. No, his brain isn’t wired for how we teach our children today; he’s wired for the future. He was a late talker and has difficulty with reading and writing because he’s a natural at telepathy. Trust me, the first time I learned this I was completely caught off guard and was a HUGE skeptic. But almost a year later, I have read a ton, worked with a few different intuitives, and understand it all much better. Does this mean we’ve stopped therapies. Not at all. But now I keep reminding him of just how amazing he is, and that people at school just don’t get it.

    • Kissy

      This post really put things in to perspective for me. Thank you. I am an American mother living in Italy. I read you and Lindsey Biel’s book last year and subsequently took my son to Linsdey for an evaluation. My son is a four and half year old bilingual firecracker with receptive and expressive language delay, fine and gross motor delay and though he has not been officially diagnosed with SPD he has tactile, vestibular, proprioceptive and vision issues ( sees in 2d and double vision). I have armed myself with lots of knowledge and am getting all the care i possibly can for my son… but living in another country has often left me feeling very isolated and without much support. I stumbled on your blog today looking for a bit of support and found it. Reading this post has made the isolation melt slightly and has reminded me that I am not alone. Thanks for your sharing your insights and experience.

  7. I’m so glad so many of you could relate to this post! It’s really important to remember YOU ARE NOT ALONE. We other parents get it; we really do. One thing that really helped me over the years is being part of online support groups. You post about your very bad, terrible, horrible day, and almost instantly, a flock of moms from all over the country post messages of support. Boy, do we need that! I still correspond with some of the moms that got me through the worst of it ten years ago.
    Another thing that always helped was being a shutterbug: I took photos and videos all the time, and kept a log of milestones on my computer. For our kids, there are SO many milestones that are “no biggie” for other kids but huge for ours–blowing out a candle for the first time, dressing himself for the first time, tying shoes for the first time. I really made a big deal about all the little victories and it helped me get over the temptation to compare my child to other, typically develop children.

  8. sheena

    I am a parent of a special needs child….I feel like I’ve fell in a pot of alphabet soup! But I guess it was good for me because I hope to be able to go back to school to get a degree in special education so I can help other parents the way I’ve been helped.

    I love the parents that try and give advice when they have typical children…the worst was a parent at my sons prek showing another parent how she had to use “the autism hold” on her daughter that morning because she was soo bad…..her daughter doesn’t have autism….and she just acted like its used when a child is bad and the way she described it made me sick….I just looked away any other day I may have jumped in and explained why parents use deep pressure for children w/sensory issues!

  9. Mary Bergman

    What is the Thomas the Tank engine thing???? Though my son will be 9 tomorrow, i have not had any labels until recently and am just now seeing how certain of his ‘ways” may be a clue as to what is going on with him. I definitely get the “bad Mom/ bad kid” thing. I have had lots of “helpful hints” on parenting that have been very discouraging – mostly because I wondered if they were right. Somehow i parented my other kids okay, but . . .

  10. Ruth

    Wow!!! Why have none of the “professionals” ever mentioned this word? “Echolalia”. My now 3 1/2 yr old has SPD. Along with a host of other symptoms, repeating is one of them. She does it under her breath without even realizing it. Thank you for your blog I will definately be visiting regularly.

    • I don’t know how much value my personal experience has here, but at 3, my son would repeat the last few words of our sentences–until we started giving him flax seed oil in his juice in order to help with his apraxia. The echolalia completely disappeared then. I hope you find some answers!

  11. Karla

    What an amazing article. Thank you for writing it. My son has Apraxia and SPD. His Apraxia seems to be “resolved”. Now we are dealing with low tone, oral defensiveness, SPD and major fine motor issues.
    So SPD is covered under OHI? What services did you get for it? We are hoping OT will continue for us…

    • SPD is CLASSIFIED as OHI. Whether or not your district treats it is a whole other question!
      I got extraordinarily amazing services for my son in EI and the 3-5 program in New York State a few years back. He got two OT sessions (40 minutes each, as I recall) per week.
      Talk to your district OT if you have one–ask what she does with the kids. Sometimes, they only work on fine motor issues. Many districts have no occupational therapist working with them.
      I held on to OHI so that his IEP would always register the SPD. I did not want anyone thinking it went away altogether just because he no longer needed services.

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