Feb 24

25 Things Parents of Children with Special Needs Want Their Kids’ Teachers to Know.

school_etlA year or so ago I gave a presentation for people who are training to become special education teachers and to prepare, I asked the parents on the Easy to Love Facebook page what advice they’d give these future teachers. The advice they gave was spot-on – not just for people training to work with   kids specifically designated “exceptional,” but for ALL teachers, since most of our kids are mainstreamed.

Here’s the advice. It’s wonderful. Pass it around. Link to it. Print it out. Share.
  1. Children with “invisible” special needs, like ADHD, PDD, SPD, PBD, FASD, OCD, Anxiety,  ODD, Autism, Asperger’s, and many others manifest their disabilities behaviorally. It is EASY to blame the parents for these behavioral problems. It is ACCURATE to see these behaviors as a result of their brain dysfunction.
  2. Communicate, communicate, communicate. Communicate! We can’t help if we don’t know what’s going on.
  3. On the flip side, if we over-communicate, cut us some slack. We are not helicopter moms, we are experts in our own children’s special needs. They, and we, are often misinterpreted and we’ve found that the squeaky wheel gets the grease. Let us squeak! It’s not nosiness. It’s not pestering. Really, most days, we would much rather say “It’s your school, you handle it, don’t call me”– but we want our kids to be successful. Which means being their best advocates. Which means we call or email as much as is necessary. Continue reading
May 16

Repost: Food is not a four-letter word. Help for picky eaters!

picky_eaterMy son has Sensory Processing Disorder (also known as Sensory Integration Dysfunction). One aspect of the vast range of symptoms of the disorder is that he is a very picky eater. He doesn’t want to try new foods, he doesn’t like his foods mixed together (which means he can’t appreciate my casseroles, soups, and salads), and he doesn’t even want to eat a food that has touched another on his plate. I knew he was sensitive to the textures and smells of foods because of his oral and olfactory sensitivities. But it took some research to figure out that there is much more to it than just that.

He’s thinner than I’d like, especially after a growth spurt, but we’re thankful that so far this problem hasn’t restricted his growth or health. Mostly, it’s just very annoying to me as a parent. I work hard to cook a healthy, tasty meal for the family, and pat myself on the back for not buying fast food or overly processed/frozen items, but it seems his first response is always, “Mom, this is yucky. Can I have a PB&J?” It’s hard to shake the feelings of under appreciation and worry about his health and remember that it’s really about his neurological disorder.

Over the years, we’ve tried to choose our battles, and until lately food hasn’t been one of them. I’d always tried to convince myself that when he was hungry, he would eat, and as long as I was giving him a quality daily multivitamin and healthy food choices, he’d be just fine. That’s still theoretically true for my son now, but for many children with more severe aversions, those labeled Resistant Eaters, this issue can present serious health concerns. It is not uncommon that children diagnosed with other disorders including Autism, Asperger’s Syndrome, and Pervasive Developmental Disorders would also be Resistant Eaters. Continue reading

Mar 30

When Invisible Disabilities Aren’t

I embrace the term “invisible” disabilities to describe our Easy to Love (ETL) kids; kids with mental health conditions, developmental disabilities, or behavior disorders that are manifested through internal stuggles or behavior, rather than being clearly visible in their bodies, or on their faces. The invisibility of ETL kids’ issues is what leads to so much misinformation, judgement, and blame. Our kids often appear to simply be defiant, bad, naughty children, and we appear to be indulgent, lenient, ineffective parents. Continue reading

Jan 11

Repost: Caregiver Stress and the ETL child, part 2

See part 1 here. Both parts were originally posted 5/10/11.

So why is divorce more likely in ADHD families? And why are parents of children with behavioral issues more stressed out than other parents?

Ha ha! I’m sure we all know! Because it’s really, really, really, really hard to parent a child with behavioral issues! If home, the very place that’s supposed to be a place of respite, calm, and nurturing turns into a constant battlefield at worst, or at best a place where your child’s behavior needs to be carefully managed, of course it’s going to impact a marriage. Add to that money problems (therapists, psychiatrists, OT, educational advocates, and medications all cost $$$), disagreements in the best way to parent the child, and lack of decent time together (because it’s so hard to get a babysitter!) and it’s really no wonder that a marriage suffers.

Continue reading

Nov 17

Can I change the attitudes of my ETL daughter’s neurotypical classmates?

Some time back I listened in on a virtual press conference kicking off abilitypath.org’s “Disable Bullying”  campaign and the release of the report: “Walk a Mile in Their Shoes: Bullying and Special Needs.”  Reading the report, about how ETL kids and other kids with disabilities are bullied was an eye-opening, cringe-inducing, heart-breaking experience. Continue reading

Oct 07

Stages of Dress

Rachel Penn Hannah

Youngest daughter comes home from her first ever slumber party. She is ten years old, has ADHD, and has never been invited over to a girl’s house to play (not counting cousin). Girls have been invited over to her house to play to test the waters, but no invites to reciprocate.

Daughter is over the top excited when mother and father pick her up. Daughter had been preparing for days, carefully picking out birthday presents her friend would like: a large box of popcorn, a book about horses, neon green nail polish, and a small make up kit. Then daughter wrapped them individually, putting boxes inside boxes, each with a riddle folded on top.

Daughter says she did not fall asleep until 3 am, then woke up at 6 am with the rest of the girls. “It went well,” mother and father were told when they picked daughter up at the front door. Suddenly their spirits were light as air in contrast to the heaviness and dread they had struggled with through the night.
Daughter talks non-stop during the car ride home. She talks about the many things they did together, but mostly about “talking almost all night.” Mother could see daughter’s face in the rearview mirror and saw a wide-eyed thrill when daughter said, “And we gossiped.” “Oh it’s not good to talk badly about people,” mother felt compelled to say. Daughter looked confused, quickly saying, “we gossiped, Mom, you know, we talked about people but we didn’t say anything bad about them.” “Oh”, mother and father say in unison.

Continue reading

Aug 31

Lessons from Training Dogs

Rachel Penn Hannah

Six years ago we got our first family dog. I knew instinctively that if the dog was not well trained I would not like the dog. As the weeks got closer to our puppy arriving from Yamhill, Oregon, I spent hours doing internet research about crate training. I learned that our newly remodeled house would be overwhelming to a puppy and that she needed to have her boundaries confined to the kitchen/dining room where we spent most of our time as a family unless we were playing with her in other areas of the house. I provided her with chewing toys to satisfy her oral needs and inspected her ears and body daily to get her used to cooperating with us and the vet. Our dog was also always fed after us at dinner. She learned to watch us eat, without begging, waiting patiently for her turn so as to better understand the order of dominance.

Omi was one of a liter of 12 puppies and had always slept in a pile of puppies until the day she arrived to us in California, having flown in a plane. Even though I felt sorry for her, I did not let her sleep with us like I wanted to ( an adorable soft nine pound goldendoodle). Instead, I insisted on her sleeping in her crate beside my side of the bed. She cried and cried until I put a sleeping bag on the floor and stuck my fingers through the door of the crate so she could lick them. She quickly fell asleep. We did this for about three nights before I realized that she just needed to see me, so I put the crate on a chair next to my bed, at eye level. She dutifully went to bed every night about 8:30 and soon slept through the night. She also learned “sit”, “down”, “shake”, and “come” all before she was 12 weeks old. I have never been so proud.

Continue reading

Aug 25

Guest Post: Therapist Bobbi Emel writes about RESILIENCY and parents of SN kids

Libbie and Joe

Libbie wrote to me and asked if I had written any articles on the resiliency of families with special needs children. Her youngest son, Joe, has multiple disabilities and I asked Libbie to tell me about how her family has utilized resiliency over the years. Here’s what she wrote:

As far has having resilience regarding our son, I think I am getting better as I get older. It is a continuous process. A sense of humor and appreciation are so important. Also, allowing yourself a little down time when needed. This past year when we learned of Joe’s chromosome abnormalities, I allowed myself to grieve. This is not something I have ever really done. As difficult as it was, it’s what I needed so I could accept that this is my son’s life, our life, and our future. I was able to bounce back because I allowed myself the time to acknowledge the realities of our lives. Also, I keep reminding myself that when I was blessed with these beautiful boys my original goal as a mother was to raise two polite, caring, and happy young men. Those are goals that are achievable for Joe as well as Justin [my older son who is at college].

Libbie’s honest response about her family’s journey with Joe inspired me. Although I previously have not written about resiliency with special needs families, I did a partial review of the literature and found some common threads in resiliency practices within the research. Here are 9 ways families with special needs children practice resiliency (these are not in any particular order):

Continue reading

Aug 17

Embracing the Roller Coaster

My boys are in drama camp this week, their last camp of the summer. This Saturday, camp will culminate in two performances of Snow White and the Seven Dwarfs. Because my boys limitations are “mild” and invisible to most strangers, I try to “mainstream” them as much as I can.

They have sensory processing disorder, a metabolic disorder (pyrroluria) that looks a lot like Asperger’s that we treat with vitamins, and mild anxiety. Most people who meet them at first don’t even realize they aren’t neurotypical. They do so well at times, and I’m so used to their issues, that I wonder if the labels need to follow them to new situations. I think, Maybe I should let the labels go, not mention them to the camp counselors, maybe they’re close enough to “normal” that no one will notice. Maybe my kids are typical enough that I’m not even qualified to blog at Easy to Love. Then, when I turn off the autopilot and pay attention, I’m reminded that the therapies have helped but my boys aren’t “cured.” I realize that this community is where I belong, because they understand and can relate to my situation.

Continue reading

May 12

A Not-So-Perfect Summer

I can’t believe it’s mid-May already. In a little over a month, my twin seven-year old boys will be done with their public school first grade experience, including the support we receive through their Individual Education Plans (IEP’s). I have to admit I’m a little nervous. They’ve been in school for six hours per day, five days per week, and now I’m out of practice at entertaining them and caring for them for so many hours in a week.

Have you been diagnosed (or self-diagnosed) as a perfectionist? I have to admit that I suffer from this debilitating ailment. Last year at this time I had already designed a written plan of weekly summer enrichment activities that were meant to maintain, if not advance, my boy’s academic and behavioral success. Am I a trained paraeducator? No, just a mom on a mission.

My plan last summer was ambitious. I knew I wouldn’t accomplish everything in the plan, but for me, just striving toward the perfection was enough. I was and still am proud of the plan, which included a special activity for every day of the week. Mondays were science field trips (to forests, arboretums, and streams), Tuesdays were arts and crafts projects, Wednesday was Adventure day (hikes and bike trips), Thursday was public library day, and Friday’s held park play dates (to help my boys continue to build their social skills and communication).

I also chose two or three major goals for each child to achieve by the end of the summer. Choosing a small number, I reasoned, would help me focus on what was really important when I was feeling lazy (as if!), or overwhelmed by all the choices of what to do (a regular problem).

Last year, I chose as major goals:

  • riding their bikes without training wheels,
  • learning to swim well (so I didn’t worry so much about them), and
  • learning to tie their own shoes (selfishly because I was tiring of the task).

My fellow mom friends chuckled and rolled their eyes at my ambitious plans, but they were also inspired to come up with their own, probably more realistic, summer plan for their kids.

I have to admit that last summer, not even for one week, did I actually accomplish all that I’d planned for the boys. But most weeks we accomplished at least three out of the five days. For that, I was proud of myself and of my boys flexibility, willingness, and energy. It wasn’t perfect, but I kept focusing on what I was doing right, instead of what I failed to accomplish.

Of course I have no empirical proof (I am a scientist after all), but I do believe that our efforts prepared the boys for their transition into first grade, and certainly influenced the leaps both boys made during this school year.

My greatest joy of last fall was when the special education coordinator said, “It seems like the boys didn’t lose what they learned in kindergarten over the summer. Great job, mom.” She has no idea how much her praise and reassurance meant to me.

This summer will be quite different and I’m a little scared. Granted, the boys are now a year older and they’ll have a greater level of independence (yeah for me). But I won’t be able to provide them with the same level of attention and determination as last summer. This year I have my own disability to deal with (thankfully temporary). I tore several ligaments in my knee and broke my tibia just jumping in the air at a rec. volleyball game. Well, it wasn’t the jumping, but the landing that did me in. I’ve been on crutches for over seven weeks, and unable to cook, clean, (frankly not missing it) or do much else but yell crazily across the house while swinging a crutch in the air. Although I started walking again this week, our future is uncertain. I must decide when to have surgery to repair my meniscus and ACL and I must actually work at healing my injury, like a part-time job through physical therapy.

Last year I could put the boy’s needs ahead of my own almost every hour of every day if needed. I was shooting for “the perfect parent.” But this summer, I’ll be far from perfect. I’ll have to say no a lot more often to elaborate crafts and science experiments, there will be fewer grand outings, and this summer, my boys will learn the hard but valuable lesson about putting someone else’s needs before their own.

As an empress of worry, I enter this summer with the fear that my injury will hinder my boys behavioral, emotional, and academic progress. I’m concerned that heading back to second grade in the fall will be tougher for them without all the prep I’d planned.

My plan for this summer will surely not be anywhere near the perfection we glimpsed last year. Instead, it will be a grand exercise for us all in compromise and learning to accept “good enough.”

This experience has taught me many lessons, a few of which I’ve listed below.

I’ve learned to:

  • be more patient,
  • gracefully say no to opportunities that aren’t an “absolute yes”,
  • accept and appreciate help from others,
  • accept that I will never be perfect (still working on this one) J,
  • set my standards at a more realistic level, and not beat myself up when I “fail”,
  • appreciate my husband for the super-dad that he is, even when he doesn’t do it my way,
  • encourage my children’s independence,
  • worry less about reaching (or not) specific milestones, and
  • focus more on spending memorable time together.

I’m sure that this summer, together, we will all learn many more life lessons.

How have you learned to muffle (or strangle) your inner perfectionist? What is your “good enough” summer enrichment plan for your special needs child? And please send me an e-mail if you’ve got any advice on how to recover from a knee injury. 🙂

Thank you for reading and sharing your stories with this group of caring, supportive parents.

Lorraine Wilde is a freelance journalist, environmental scientist, and mother. Her work has appeared in Entertainment News NW, Ithaca Child, and on the parenting web site Neighborhood-Kids.com. She is writing her memoir, and also blogs at My Wilde World.