advocacy

Tickle My Back, Mom!

My youngest child, Beckie, has always been cuddly and affectionate. As a newborn, she quieted as soon as I picked her up and held her cheek next to mine. I thought she recognized my voice, but it was the skin-to skin contact at least as much as my words to her that seemed to calm her. As she grew, I noticed that when others picked her up her little hands immediately started fingering the material of the holder’s clothing. She gently explored the feel of earrings, necklaces, scarves, and even daddy’s whiskers. At age three, I took her with me to a craft show. Knowing how she loved to touch different textures, before we went in to the show I reminded her to look with her eyes and not her hands. She looked both sad and surprised as she protested, “But Mommy, to look IS to touch.” Those were her exact words, and it confirmed that I had a very tactile learner and that I needed to allow her to touch some of the items that caught her interest. I ended up telling her that if she saw something she wanted to feel, she could ask me first and I would find out from the vendor if Beckie could touch the objects to see how they felt in her hand. As she grew older still, I heard the same request every day during our homeschool time when I was reading to the children: “Tickle my back, Mom!” If you are familiar with sensory integration (AKA sensory processing), you know that tickling can be aversive and irritating to some children. In Beckie’s case, she was sensory seeking and had lower registration for tactile input so the tickling was alerting to her. When she is just listening and not actively moving, it is hard for her to focus. Her AD/HD leads her into daydreaming and distractions. She recognized this about herself, and one strategy she found that seemed to help was to have her back tickled. The light touch was enough to help her stay alert and focus on listening to what I was reading. I became adept at one-hand holding or propping a book, depending on the size of the book, and using my other hand to trace lightly over Beckie’s back. I tried using a wooden backscratcher once, but that didn’t have the same effect for Beckie. I tried a backscratcher with metal scratchers, but that was also not acceptable to Beckie. When I became too absorbed by what I was reading or needed a drink of water and would thus cease the tickling, Beckie noticed immediately and either wiggled against me to prompt me back to task or grabbed my hand and placed it where it clearly belonged – on her back again! Sensory input can be calming or alerting, and each individual’s response to input varies. Often, as in Beckie’s case, our children show us over and over what they need and what works for them. Be observant and sensitive to individual differences, and take advantage of the strategies that work.

To Tell, or Not to Tell?

i26I’ve met many parents who are pretty sure their child has AD/HD or some other learning challenge but they are hesitant to make it official by having their child evaluated and diagnosed. The fear that a label may limit their child, be inaccurate, or be used in discriminatory ways is valid. When my son, Josh, was approaching school age I thought about the advantages of private schools with smaller class sizes. Several people suggested that I go ahead and enroll him without telling the school personnel about his AD/HD diagnosis so they couldn’t turn him down. That was before we knew he also had an auditory processing disorder. I was assured that once he was enrolled in the school, they couldn’t kick him out just because he had a diagnosis and they would be forced to work with him. Wow! For one thing, Josh was pretty easy to pick out of a group as being different than his peers. I’d give it 5 minutes tops before things became unavoidably noticeable. So basically I would have had to keep him out of sight until school had officially started. Then there was the whole idea of the people he would be spending hours with each day being tricked into having a student that they weren’t prepared for and apparently didn’t feel equipped to deal with in their classroom. That made me feel sorry for Josh and for the teachers, since having someone who was “forced” to work with my child because I had hidden some vital information from them just didn’t sit well with me. I loved that boy, and the thought of sending him somewhere that he might not be wanted didn’t make sense to me. I had the same dilemma when it came time for Sunday School at church. I didn’t want to bias the teachers against Josh by telling them all his struggles, so I coached him on the way there and dropped him off like all the other parents with their children. The Sunday School teachers, bless them all, are volunteers in the church and most don’t have training as educators – and for most kids that’s just fine. But to do the “drop and run” with a special needs or challenging child is not a good idea, as I came to realize. Every week, the other parents would pick up their children and happily leave. When I came to pick up Josh, I inevitably got pulled to the side and told, “I need to talk to you about Josh.” Then I heard, week after week, a full litany of complaints from frustrated and bewildered teachers who were describing things that were not unusual for Josh but were not typical for most children. For example, Josh was not adept at sitting still for long. He was not deliberately disruptive and was never disrespectful, but his need to stand at the table while coloring his page instead of sitting in a chair like everyone else was considered problematic. His sensory issues led him to sit at the back of the group on his carpet square, and everyone else was huddled together and bumping into each other which Josh was carefully trying to avoid. But that meant he wasn’t “with” the group because he had made a row of one – just himself! And the list would go on and on until I was finally allowed to leave with my miserable son who knew that somehow just by being who he was he had screwed up again and people were unhappy with him. Those experiences led me to advocate more and be preemptive with anyone I left Josh with for any length of time. When there was a sub or a new Sunday School teacher, I made a point of telling them a bit about Josh and strategies that would help them, and I was careful not to dwell on the negatives. I shared Josh’s strengths, too, for I found that if I became negative about my son others felt free to share every little thing they saw as being wrong or weird about him. I was well aware of Josh’s struggles and it served no purpose other than to discourage me when others felt the need to complain about him. All this, and he wasn’t even doing anything “bad” on purpose! When someone was going on and on about all the things Josh did or did not do, I learned to quietly point out something that he had done right, or I’d share something that Josh had enjoyed learning in their class previously. This seemed to derail some of the negativity some of the time. Just as with our kids, nothing works all of the time but something will work some of the time. We need strategies for working with those who are in a position to care for our children, and hope that something will work some of the time. Whether you are a natural advocate or a reluctant one, if you have a child with a learning difference or special challenges, you must be an advocate unless and until your child one day develops the skills to advocate for himself. In my experience, being deliberate in my advocacy was hard but preferable to what happened when I just waited and hoped things would work out for the best.

Lessons from our Moms

Happy Mother’s Day (a little late, but still heart felt) to all of you mothers, and all who have mothers. There! That should cover everyone. I was thinking about the kinds of things I wanted my children to learn from me as their Mom. I wanted to teach my children some rules they could utilize throughout their lifespans, thinking something along the lines of, “Mom always said…” Here are some examples of principals and ideas I hoped to pass on to my children:
1. It is better to take responsibility for your actions than to weasel out of things.
2. If you don’t learn about your freedoms and rights it will be easy for others to take them away.
3. Your friends may move away or stop being your friends, but your siblings will always be in your life so you need to learn to get along with them.
4. If you don’t learn to discipline yourself, others will be willing to tell you what to do.
5. Hard work almost always pays off.
6. Decide who you want to be and start acting like him/her now.
7. Learn to deal with boredom while you’re young – you’ll be ready to handle mundane tasks as an adult.
8. If you use the last of the toilet paper roll, replace it.
9. Make decisions about how to respond to others before you are in the heat of the moment.
10. Give others the benefit of a doubt when you can, and choose to forgive.

Here are some of the incidental things I know my kids learned from me:
1. Mom doesn’t like finding empty milk containers in the fridge.
2. Mom needs more sleep than we do.
3. When Mom is tired, she’s not as patient.
4. It’s better to tell Mom we broke something than to leave it for her to find later.
5. Sometimes even Moms cry.
6. All people should be treated with respect, especially Mom.
7. Mom doesn’t give up on us.
8. Mom is pretty funny sometimes.
9. When Mom says “No”, she means it even if we take turns asking her.
10. It takes a while to get her there, but when we make Mom blow it’s an impressive show.

So some of the things I’ve taught my kids aren’t exactly the kind of ideals I’m proud of but I think I managed to get some good in there, too. My kids’ lists of what they learned from me might be interesting to see. Perhaps someday when I’m feeling particularly strong and resilient I will ask them to write it down for me. Until then, I’ll keep working to develop the wisdom I intentionally try to pass on to them.

Love Your Peter Rabbit


Today’s post has been inspired by The Tale of Peter Rabbit by Beatrix Potter. Before I had children of my own, I was of the opinion that Peter Rabbit was kind of a brat. He didn’t listen to his mother, got himself into trouble, lost articles of clothing, and left messes for someone else to clean up. Then I had my own “Peter Rabbit” kind of child. With my highly impulsive son, I saw similarities with the little rabbit who didn’t listen and got into preventable and unfortunate situations on a regular basis. Even my daughter who is 15 months younger than my son recognized at an early age some unfortunate parallels from the Peter Rabbit story and our own family. Being the compliant, “neurotypical” child, she identified with Flopsy, Mopsy, and Cotton-tail, who are described as “good little bunnies” who follow directions and do what they are supposed to do. As a side note, if all of my children had been like Beth, I would probably be giving parenting workshops at conferences instead of the topics I currently present for struggling learners. I also have a sinking feeling I would be judging all the parents with kids like mine! So God spared me from myself by humbling me with my challenges. In The Tale of Peter Rabbit when I would get to the line, “But Peter, who was very naughty, ran straight away to Mr. McGregor’s garden, and squeezed under the gate!”, Beth would say, “Just like Josh, right?” At this point, Josh would sigh, but I think he was secretly rooting for Peter to somehow be able to get away with it this time. Now, before we judge little Peter Rabbit too harshly, let’s consider a few factors that may be in play in his situation. Peter may have inherited a tendency for some of his behaviors, since we are told his father “had an accident” in the very garden Peter ran to as soon as his mother left for her errands. Plus, there is mention of a cousin who apparently has had a run-in with cats. There is a family history implied here. Now, consider the lack of strategies throughout this scenario. Did his mother get his attention before giving her instructions? No. Aren’t her directions long and wordy, making it more difficult to process them? Yes. She didn’t have Peter repeat back what he’d heard to make sure he understood it. Even her parting words, “Now run along and don’t get into mischief” seems almost like an expectation of trouble to come and puts a negative tone on the situation. Peter may have stopped listening after “Now run along…”. All things considered, it doesn’t sound like a good idea to leave Peter alone! How irresponsible of Mrs. Rabbit, come to think of it. Her approach works with her other bunnies, but Peter clearly needs more support. So now I’ve gone full circle from thinking Peter is a brat to defending him, and I know it’s because I’ve felt protective of my oft-misjudged son. At the end of the story, when Peter makes his way home and is dosed with medicine and sent to bed, his sisters get to have a treat of bread and milk and blackberries for supper. The “good little bunnies” get the reward. My pre-Josh attitude was “Serves Peter right! He made bad choices and maybe this will help him learn to do what he’s told next time.” Now, I think if I were Mrs. Rabbit I would hold back some of the yummy blackberries to make sure Peter got to have some when he was feeling better the next day. And as he was eating them, we would talk together about what had happened and how to do things differently in the future. I would reassure him that I loved him just as much as I loved his sisters, and tell him he was every bit as special as they are to me. My advice is, if you have little Peter Rabbits in your life, love them. Support them. Teach them. Teach them again when they forget. And when people give you a look or misunderstand your child, remember that they are probably not blessed with a Peter Rabbit of their own and don’t understand because they haven’t experienced what you have. And then love your Peter Rabbit some more.

“Normal” is whatever you’re used to

My daughter, Beth, has grown up with an older brother and younger sister who struggle with AD/HD, auditory processing, and sensory issues. Any outsider to our family in our younger days would have been able to see immediately that two of the children were not typical in many ways. To Beth, however, she’s grown up with them and is used to the way they need to hear directions repeatedly and have tasks broken down into small steps. She’s grown up seeing strategies in place to help her siblings keep track of school materials, shoes, and of course the elusive and frequently missing library books. She grew up pairing visual cues with auditory information to maximize retention and knows that without writing information down her siblings will not retain it. Beth has an in-depth understanding of the need her siblings have to be in motion, even while they are doing school work. She can list a dozen safe ways to meet the need for physical activity without it being too distracting to others or dependent on the weather. Beth is adept at redirecting a distractible child and helping them get back on track with their focus. Now a college student majoring in special education, Beth recently joined me at my part-time employer to be a substitute teacher in a preschool classroom. She thoroughly enjoyed her day with the children, and those working with her gave her rave reviews. They said she was a natural, and jumped right in without having to be told what to do with the kids. When I passed the compliments along to Beth, she was pleased but really didn’t think what she did was a big deal at all. Beth’s whole life has been part of her preparation, and to her she is truly doing what comes naturally. Her response to some of the challenges of special needs kids comes automatically, through years of practice and observation in her own home. Beth feels passionately about helping children who struggle, and her insight and experiences make her a natural in her interactions. Her responses reflect that “normal” doesn’t necessarily mean “like everyone else”. “Normal” can be whatever you are used to, and will vary from unusual person to person.

Seeking God

Today some godly women are fasting and praying with me for Josh’s work situation. We are seeking God and asking Him to make it clear if we should be advocating for Josh in his current position or if God wants Josh to make a change. Josh has gone the established routes for reporting incidents, through his supervisor, the HR person in his store, and even meeting with the general manager of his store. They all assure him that what he has experienced is not acceptable and they promise him that things will change. Yet nothing concrete has altered. Josh finally felt he had no choice but to take it up a level, and called the district HR person. Although she was polite and professional, and also stated that the abuse Josh has experienced is unacceptable, she took no action on his behalf and left him with the advice to report every single incident to his supervisor. Josh has already reported more than enough for action to be taken, but it’s not happening. His supervisor is not always available or in the store when the incidents take place. Josh actually likes the job most of the time, and he would rather not leave at this time even though this is not his final career destination by any stretch of the imagination. But unless something actually does change, he will have to continue working with the repeat offender of verbal abuse and bullying whenever their schedules overlap. Fortunately, Josh is resilient, and I love him for that and so much more. He has been an example to me of showing grace and returning respect for inexcusable behavior by management. I can tell, though, that this work environment is taking a toll on him. So thank you, my friends, for your prayers on Josh’s behalf. Many of you only know of Josh through hearing me speak at conferences or at our Bible Study. Your support means more to me than I can express. You know my mother’s heart, and how hard it is to see and hear what Josh has experienced. You stand with me, and your compassion and caring ministers to my very soul. I appreciate you all, and the God who knows His child Josh better than any of us ever will. May He make His will known to us!

Bitterness

Bitterness. It is so easy to feel it and so hard to rid yourself of it. I guess like many things, it’s better if you can prevent it than to try to eliminate it once it’s there. When you have a child who struggles, you have a greater likelihood of being rejected or misunderstood as a parent. Besides that, if you are like many of us, you also feel your child’s hurts as if they are personally happening to you. In a real way, we are rejected when our children are, because we cannot fully separate ourselves from who they are – and I’m not sure we should as long as they need us to advocate for them. When a child acts differently from the norm, or in ways that are interpreted in a negative light, it is a near certainty that sooner or later we will get unsolicited advice from relatives, friends, and even strangers. Sometimes we are just given “the look” of disapproval, and that can be as painful as spoken words. The reality is, not everyone can understand your individual situation. Some people take one look at us and decide they don’t even want to understand us. Here’s the rub: if you let those looks and comments get under your skin it will be hard not to become bitter and resentful, and as a result you will be less effective with your child and will feel less contented than if you can rid yourself of bitterness. I’ve been working on this area a long time in my own life, and the most helpful thing I’ve found is to choose to believe that the person making the comment is genuinely trying to be helpful. Often, they have no clue as to what I’ve already tried, etc. but I let them off the hook in my mind. I pray a prayer of gratitude for them that they don’t have to deal with the struggles I do, and then I let them go and let the judgmental comments and poor advice slide right on by.