Category Archives: IEP

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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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

Help Your Sensory Child Get Ready for the School Year

Many kids have already started the new school year. I know many of you are nervous about the changes this year. Be sure to pull that copy of RAISING A SENSORY SMART CHILD off your shelf (and pick up a copy for yourself–even for your child’s teacher!) and do take a look at our chapters on advocating for your child at school, organizational issues, and practical solutions for everyday problems. The book is chock full of practical strategies that I know you’ll find invaluable! It will help you set up a sensory diet for your child, with or without the help of an occupational therapist.

Do you have back to school rituals you share with your child? Do you write a letter to her teacher, or teachers? I’d love to know what you do to help ease this BIG transition each fall for your child with sensory processing disorder.

HELP YOUR SENSORY CHILD GET READY FOR THE SCHOOL YEAR

“Back to school” traditionally means buying fall clothing and school supplies, but there are other equally, if not more, important ways to get your child with sensory issues ready for the new school year.

Prepare your child with information. Sensory kids deal with so much unpredictability in the sensations they experience everyday that they tend to become more anxious about transitions than they would if they didn’t have sensory issues. Your sensory child may have countless questions about the upcoming school year: What will her classroom and teacher be like? Will her best friend be in class with her? What will be the lunch menu the first day? Will she sit by the window? Be patient and understand that the more information she has, the less stressed out and anxious she’ll be. Try to arrange to have her meet her teacher and explore her classroom (and the new school, if she’s changing schools) before school begins.

Prepare her teachers and her special education team, if she has one, for her special needs. Although many kids with sensory issues have IEPs, a new teacher who reads it is not going to take in a full picture of what your child’s special needs are when she hasn’t even put a name to a face for any of her students yet. Consider writing a short, upbeat letter to her new classroom teacher explaining what some of her challenges are, what accommodations work for her, and how well your child articulates her needs, self-advocates, and regulates her system. Can she respond to a verbal warning to “settle down,” or does she need to be reminded to use a specific self-calming technique that works for her? Be sure to keep your letter positive, helpful, and optimistic.

Back to school can be a tough transition for children with sensory processing issues, but there ARE ways to ease the transition.

Prepare him with supplies that work for him. Kids with sensory issues often are very disorganized and need someone to set up and teach them how to use organizational systems for managing their homework and school papers. If your school has a specific assignment notebook students are to use, and systems your child is expected to master right away, it’s best to know ahead of time. Attend parent orientation and consider talking to his teacher before school begins to be sure he’s able to begin using the new system right away without too many bumps in the road. Be sure, too, that he’s given plenty of time and leeway to master the organizational system (no punishments for losing assignments when he’s getting used to a new system!). It will take extra time and patience to figure out why he’s losing papers or forgetting to do assignments. Ask the teacher if you can have your child check in with her at the beginning and end of the day to be sure all necessary materials are where they need to be. Make use of backpacks and folders with many pockets but be sure your child is consistent in using those pockets. It’s helpful for your child to know his snack is always on the outside pocket of his backpack and his homework to be handed in is always in the same folder pocket.

Prepare him with clothes that work for him. Many sensory kids find it difficult to transition from summer clothing into fall clothing, and from favorite summer clothes to school clothing or school uniforms. Be patient, be willing to launder new clothing multiple times to make it softer, and be accepting of his need to wear shorts and sandals longer than the other kids do as autumn arrives. Check these the online stores for soft clothing options that may work for your child:

www.luvmum.com

www.tereskids.com

www.hannaandersson.com

www.smartknitkids.com

www.ezsox.com

Get involved in helping your sensory child get organized EARLY. Don’t wait until the homework notices start arriving!

 

More quick tips for helping your sensory child at school, especially for teachers: www.sensorysmartparent.com

Buying anything this from Amazon and its affiliates such as Drugstore dot com? Please consider buying it through http://www.sensorysmartparent.com (click on the copy of Raising a Sensory Smart Child and you’ll be at Amazon’s site) or VIA THIS LINK to help offset the costs of the Sensory Smart News and the Sensory Smart Parent website! Thank you for your support!

 


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Filed under A.D.D. and A.D.H.D., affordable sensory items, back to school for sensory kids, backpacks, boys in school, clothing issues, clothing sensitivities, IEP, organizational issues, recess, schools, sensory processing disorder, sensory processing disorder symptoms, special education, tactile sense, tactile sensitivity, www.luvmum.com

Special Education, School Accommodations, and the 4 Cs

The New York Times has an interesting article on special education accommodations in two highly praised NYC charter schools. Schools that receive federal funding must provide special education services (although a notable exception is the voucher/”choice” program in Milwaukee Public Schools; there is a lawsuit pending because the “choice” isn’t really a “choice” if your child has an IEP–the schools get to cherry pick and they rarely take special ed students). Regardless of where you are able to get your child into school, the accommodations for his disability need to be appropriate for him. One size does not fit all! 

 

How do you work with a school to get the right accommodations for your special education child?  The four Cs: Curiosity, Creativity, Collaboration, and Communication.

 

The article talks about two children who are highly distractible. Movement, such as a walk in the hall a few times a day, may be enough for one particular child to stay focused in a classroom of 23 children. For another child, it may not be enough. Also, let’s not forget that with sensory processing disorder, some kids are underaroused and some are overaroused. The underaroused ones may be distracted but very quiet about it–you often find them draped over a chair in the back of the room, picking at their sweaters. The overaroused ones may be distracted and hyperactive–they’re the ones who get into trouble and are more likely to be removed from class. Then too, if a child is gifted, she may be picking up enough information to do well on tests, but underachieving given her talents. How do we address the needs of all students who have learning differences? We start by understanding and respecting those differences. Then we rely on curiosity, creativity, collaboration, and communication, the 4 Cs, in order to alter the learning environment and curriculum to be appropriate for the child.

 

What do curiosity and creativity require? Any brain scientist will tell you that to awaken these qualities that are part of executive function, you have to quiet the limbic brain where you experience fear and anger. Getting angry at a child for not behaving or performing the way you’d like her to shuts down your creativity and sense of optimism and possibility ( which opens you to a sense of curiosity and wonder). On an MRI, you can actually see the blood flow to the front of the brain, where executive function is located, reduced when blood flow increases to the back of the brain and the limbic system, where fear and anger are experienced.

 

What do collaboration and communication require? Emotional intelligence, respect, and good communication skills among all team members. “Mother knows best” or “leave it to the professionals” are attitudes rooted in ego, that is, rooted in the fear that “If I’m not in control, and I’m not seen as THE expert, then I’m a failure.” And what does fear do? Again, it blocks us from our curiosity and creativity. Finding a new way to approach a problem, or a better way to express ourselves, requires executive function, not limbic brain fear. Our kids need us to put aside our egos and make the best possible effort to communicate respectfully and effectively with all members of the team, including the child.

What special education accommodations does your child need? How will you work with the school to ensure they’re provided?

And as our kids get older, they need to be more involved in the decisions regarding their schooling. They need to learn to self-advocate in a socially acceptable way. If a student is assigned a regular seat in September and then, in October, becomes extremely distracted by the construction noise outside the window, and would hear better if he moved seats, will he speak up for himself? Will the teacher notice? Will the parent have any clue? Have we taught our kids to let go of fear, anger, and resentment and use their executive function to become creative (“I could ask to change seats and solve my problem”) and communicative (“I could ask nicely”) within the classroom? Do they have the confidence to express their needs appropriately and collaboratively problem solve?

 

What’s more, we have to remember that we’re the adults and that doesn’t just mean we make the final decisions because we’re the authority figures. It means we have to be bigger people. When a child lashes out verbally, are we being the bigger person when we immediately engage in a power struggle? Or are we being the bigger person when we take a deep breath, observe what’s going on, and use our creativity, curiosity, and collaborative skills to discover the root of the problem and address it?

 

Our kids are complicated, but we make life easier when we take the time to calm our own anxiety, fear, and anger and get curious, creative, collaborative, and communicative. Only then can we find the right accommodations for our special kids.

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Filed under A.D.D. and A.D.H.D., classroom accommodations sensory, exercise and movement for sensory kids, IEP, schools, sensory diet at school, sensory processing disorder, special education

School sensory diet and the IEP

My coauthor, Lindsey Biel, OTR/L, wrote an excellent piece on the sensory diet at school and the type of IEP goals an OT needs to write to help kids who have sensory processing disorder.

Sensory accommodations should include activities to help the child get calmer and more focused, opportunities to avoid sensory input and regroup, and accommodations for homework and tests as well as for classes such as art, music, and physical education. The IEP should also spell out the agreed upon discipline procedures for the child with sensory issues who cannot regulate her system like a neurotypical child can and is prone to a fight-or-flight panic response of withdrawal or aggression.

Not happy with the school’s proposed IEP? Don’t sign it. Do your research and call for a new IEP meeting. I’ve always found parents in support groups to be enormously helpful in guiding each other through the IEP process. Others have been there before and can offer insights, ideas, and emotional support. I highly recommend in-person as well as online support groups such as the ones at yahoogroups.com and apraxia-kids.org

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Filed under IEP, online support groups, schools, sensory integration dysfunction, sensory processing disorder, special education, Uncategorized

Help Your Child with Learning Disabilities

This series in the New York Times looks promising.

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Filed under IEP, OT, schools, special education