Taking Tea in the Kasbah



The kid who is always getting in trouble at school.

The kid at the restaurant who is throwing a huge tantrum because the food isn’t “right”.

The kid who can’t seem to sit still on the plane and is always getting into everyone’s space.

The kid at the swimming pool who won’t share any of the water toys.

The kid at the playground who bullies the other kids to get her way.

The kid who never seems to be listening to the coach.

photo credit: mdanys via photopin cc

photo credit: mdanys via photopin cc

You’ve probably seen kids like this or at least heard tales of them from other people. They’re the kids who are labelled “troubled” or “difficult”, or my personal favorite, “emotionally disturbed”, labels that often become like an indelible tattoo stamped across the child’s forehead, eclipsing any hope or chance of them being seen as more than the sum of their challenging behaviors. These labels also have a tendency to have fingers pointed at the parents as the root cause of their child’s problems. What these labels and judgments don’t do, however, is offer help and support to the child and the family.

I normally don’t write about parenting issues here in the kasbah, but I’m going to break from the usual and hope you’ll bear with me. I’m moved to delve into the parenting arena because of an article I recently read in the Huffington Post about The 6 Secrets Special Needs Moms Know But Won’t Tell You. I was surprised at how much of myself I found reflected in it and then surprised at myself for being surprised by this in the first place.

Welcome to the awkward conundrums in my funny little brain.

In the article, the author, a parent of a special needs child, spelled out the six things that other people probably don’t know or don’t realize when encountering someone who is parenting a child who requires specialized attention and care. I’ve previously shared that I am the parent of two children who were both adopted at older ages. My two children had chaotic lives from birth through ages 5 and 6 (when they were adopted) and because of this they have developed some special needs as a function of the coping skills they created to deal with the unpredictability and traumatic events in their early lives.

The Bean

Finding ways to help them meet their needs and helping them develop better coping skills is something I am constantly striving to do as their mother. It has become second nature. I live and breathe it and usually don’t think about how much energy and time goes into it.

So when I read the Huffington Post article and saw the secrets of parents of special needs kids, I was once again reminded how out of the range of “normal” a typical parenting day is for me. I was both glad to be reminded I wasn’t alone and sad to be reminded our little family still functions outside of the norm.

I was also inspired to create my own list of secrets parents of special needs kids (who may also be adopted) have but don’t tell you:

1. It is a tough, demanding job parenting a high needs kid, one that requires a high level of diligence, supervision, and patience. Because of this, I can be physically, emotionally, and spiritually worn out as though I just spent the day single-handedly running a preschool of fifty caffeinated monkeys. Because of this, I’m usually on high alert, waiting for the other shoe to drop even when things are going well.

2. Because of #1, I have a weird and snarky sense of humor. It gets me through the tough times and helps me to laugh off the little things that really don’t matter.

3. Because my kids sometimes find the most socially inappropriate thing to do or say at a time when the most people will witness it, we don’t often get invited places as a family. The isolation that comes from this is, in a word, yucky.

4. The isolation is difficult to recover from because a) many people tend not to forgive or forget your child’s past transgressions and only remember your child at their worst moment instead noticing the person they are today; and b) most people find it’s easier to avoid someone than to admit they didn’t know what to say or how to help during the tough times. I get that. And it’s never too late to reach out and connect. I’ll be grateful for your non-judgmental friendship.

5. My kids will change and grow at their own pace, in their own time, just as you and I and everyone else will grow and change in our own time. Just because you’ve told me about my child’s awful behavior from earlier in the day doesn’t mean I can go home that evening and “cure” my child of ever doing that again. Their trauma reactions and anxieties will not go away overnight because I gave them a stern talking to, took away privileges, or supplied any other consequences. They will return to school/camp/practice tomorrow with the same baggage they had today, hopefully with the understanding that you will not turn your back on them (or me) because of the previous day’s problems or because they haven’t been magically cured overnight. The pressure to change in order to fit in and be accepted is overwhelming and unfair to them. Remember we’re all a work in progress and some days are just rough ones with many set backs.

6. Quite often, it takes more energy, effort, and persistence for my children to get through a day than it does for those of us who were fortunate to have had a gentle, nurturing start to our lives. When you’re carrying the heavy baggage of your past on your back, even mundane tasks can be overwhelming. Because of this, I’m going to cut them a little slack once in a while and priortize their mental health needs over that history paper, perfecting that dance routine, or getting that school project done just right. We all need a break now and then.

three amigos

I don’t regret a single second of my journey with my kids. They are the light of my life, even when their behaviors are the bane of my existence. I’m not sharing all of this to rant or vent or complain. I merely want to shed some light on those families with the really tough kid that you may know who could use your support in whatever way you can give it.

oOo

And now it’s your turn, generous readers. Are you a parent of a special needs kid? What has your experience been like? What have you found to be helpful and supportive? Do you know anyone who is parenting special needs kids? Have you found ways to lend a helping hand or has that been something with which you struggled. The tea is ready and the pillows are fluffed. Sit, sip, and share. I always love to hear from you.

25 thoughts on “Six Secrets Parents of Special Needs Children Have But Don’t Tell You

  1. Love love LOVE that family portrait, Tami. Thank you for sharing these insights with those of us who a) only know you online and are therefore mostly oblivious to your daily challenges, and/or b) are not parents and thus tend to be oblivious to daily parenting challenges in general. Kudos to you for being such a great mother, as I can tell you are.

    • Aw, thanks, Ellen! Your words are kind as they are generous. The photo is from a couple of years ago when we were playing around with iPhoto. I love how it captured their personalities.

  2. Thank you for the candid and heartfelt glimpse into your personal life, and the challenges it holds. I don’t have children, but I grew up having to parent an alcoholic mother. Talk about special needs! All I can say is that with the love, understanding and emotional grounding you give your children, I have no doubt the will become some of the most well adjusted people on the planet! I will keep your words in mind, however. And the next time I see a parent with a child acting out in public I will offer a supportive word or smile as is appropriate.

    • I can only imagine the challenges you faced. When kids are forced to parent their parent, it unfairly takes a lot away from their childhood. Even though we’ve not met in person, in getting to know you over the last year it is apparent that you’ve been able to retain a sense of wonder and excitement about the world – two important things we tend to lose when we’re forced to grow up too quickly (IMHO). Kudos to you for your strength and courage then and now.

  3. In a young human, the lungs continue to grow new tissue until about the age of seven. The head takes up about 1/4 of the total body length in a newborn, but only about 1/8 of the body length in an adult. And inside that head, myelination is occurring, maturing the nerve fibers in the developing brain until the child is in their late teens or early twenties. Because of that, it breaks my heart to see kids labeled as “X”, when “X” was two years ago and now they’re a very different person. I’ve only met one of your daughters, but she’s a lovely girl, and I hope you come visit again. Oh, and your family photo rocks!

    • Thanks for your support and kind words, Liv. I’m so glad you mentioned the biology of it all. Where I work, kids with behavioral challenges are often referred to us by their school. At the point of referral, teachers and administrators are, understandably, frustrated and at a loss for what to do with these kids. Those kids will come to our day treatment program for upwards of 6-12 months and by the end of their treatment will have gained new skills for handling life’s ups and downs as well as managing their trauma reactions. Typically, the kids make some really good progress and are feeling success often for the first time in their lives. What always throws me for a loop is the responses of the teachers and staff of the home school during our transition meetings who can only remember the difficulties that these kids heaped upon their classrooms. They find it hard to trust that the kids could have changed and they’re freaked out about having these kids back in their schools. People can change, kids especially so, and your points about the biological processes that are still in motion up through the teen years is further evidence in support of that. It’s us adults who have the harder time of it.

  4. We all carry baggage, some more than most, many carry more than what is fair. We all cope differently, and we cope differently as adults than we do as children because as adults, we have more options, ie, leaving the bad stuff behind and claiming control moving forward.
    Still, many adults act like children. In my experience, it is those child-like adults who have the least patience with children. Perhaps they fear the competition.
    But children do grow, tho I can’t describe how as succinctly as Liv, lol. I’ve no doubt your children will grow into lovely, responsible, conscientious adults. How could they not, with you as their role model?

    • Many thanks, Sherry. We all have stories and histories and baggage that we carry with varying degree of coping skills. And we’re all capable of change, a fact that is often overshadowed by the level of difficulty it requires. I have faith my kids will continue to grow and change in positive ways. It may take longer than some to achieve it, but forward progress of even the smallest steps is still progress.

  5. Tami: I’m not sure what I want to say but I want to say something. I am so glad that you brought forward this discussion. As Sherry says, we all carry baggage and we all cope differently. My children do not fit the special needs category (although they have their own special needs) but I have a couple of close friends with children who have been picked on, degraded, labelled by kids and so-called trusted adults because of their issues, whether they are physical, emotional, or related to learning styles. It has been a true education for me to watch these children grow and to recognize in myself the tendency to label first, in order to gain some control of a situation. I am thankful that these kids (now teens) have been such an integral part of my life because I have learned so much about humanity and compassion and the true specialness of kids who do not function in a standard, societally expected way.

    • Thank you for commenting, Sara. I, too, have learned a great deal from my kids as well as from the kids I’ve met at work. They all have been far greater teachers than anyone I was taught by as an undergrad or grad student. Your friends are fortunate to have you stand by them and their kids through both the good and the not so good times. I’m reminded of the saying “it takes a village” when I think of tribes of people banding together to look out for each other.

    • Awww, you’re gonna make me blush. I don’t believe I’m any more amazing than most other parents out there, but thanks for saying so. 🙂

  6. HI Tami,, Somewhere along the line I missed that you were parenting two adopted children with special needs. I cared for two half sisters as foster children (ages 7 and 9) in my home for over a year, then was able to get legal custody of the older one, then finally adopted the older one when she was twelve. (The younger one was not eligible for adoption because her natural father was still in the picture.) The girls were removed from their home multiple times due to parental drug and alcohol abuse.
    At the time, I was working in a special program with students who had behavior and emotional issues due to family or personal drug and alcohol abuse. The social worker thought I was ideally suited to work with these two young girls with emotional and behavior problems.
    Wrong! Wrong! Wrong! In fact, these two girls gave me the education of my life! The great special education teacher learned humility FAST.
    This was the most difficult ten or so years of my life. But, thankfully, now I can see the results. My adopted daughter is married with children of her own, and she is doing very well. Those years were hard, but I wouldn’t trade them for anything. The training the girls gave me made me a better teacher and administrator. It helped me reach out to struggling parents. My perspective on life is vastly different…better… because of this experience.

    • I didn’t know you had foster and adoptive kids, Janice. I definitely know what you mean about humility and the bigger than life education handed to us by our kids. As a child and family therapist, I thought I had an idea of the wild ride I was in for, but I soon found out I was oh so wrong. The heartbreak and frustrations are much greater, but so are the joys and the little victories.

      I’m so glad to hear your daughter is doing well, in part, no doubt, because of the time and attention you devoted to her. It’s very encouraging to hear stories like yours with such happy outcomes. Thank you for sharing your story!

  7. Tami – All kids are challenging at times. Mine are grown up now but some of the teenage years were tricky. Back then, I remember another mother helping me through a rough spot. She said that she had son like mine and that for a few years, it was like “he lost his baseball cap”. But then he found it again and all was well with the world.

    There will inevitably be those days when they lose their metaphorical baseball cap. We all get through those times. We love our kids to pieces. And life goes on.

    Thanks for your wise words. Your little girls are very lucky to have you for their mom. Great photo of the 3 of you!

    • I agree, all kids are challenging in some way at some point in their lives. And then there are those kids who can be challenging nearly all the time. It’s a whole other level beyond the average kid, as though the metaphorical baseball cap isn’t just lost, it’s in another country across the ocean.

      The teen years can be the roughest (which is where we’re at now) and I know on a biological level (as I was reminded by Liv) there’s a ton of stuff going on that makes life just that much harder to navigate. But encouraging words from other wise parents such as yourself are always helpful and appreciated, so thank you!

    • Thanks for the connection and the mention, Janice! I’ll be sure to pop over there and check out her blog.

  8. I don’t have anything to add as far as parenting a special needs child since I have no experience in that area, but I just wanted to say that you adopting older children is a beautiful thing.
    Lovely pic 🙂

  9. on ,
    jenny said:

    Oh…my…word! FINALLY… someone writing about a child like mine! I follow another blog: wherearetheblessing, and can SO relate to her struggles but on a different front – like yours! We got our son as infant (fostered) ….already harmed and broken. He was finally adopted at the age of 5… more harm. The roller coaster that we have been on as a result of all this abuse is just really unimaginable, even to close friends and family. They can NOT relate in the least. They just hear stories but are still so detached from the daily, weekly, yearly struggle we wade through. God has been our REFUGE from this 12 1/2 year storm, but it still rages on, although sometimes quietly.
    I LOVED your article. My son is so precious!, but wears those same “stamps” on his forehead.

    • I’m SO glad this resonated with you! Thank you for commenting. It can be difficult to find people who truly understand the parenting journey we’re on, though I’m always appreciative of those who really try.

      I also follow a blog of a woman who is a adoption therapist and has herself adopted many children from the foster care system: Brenda McCreight – http://www.theadoptioncounselor.com/Blog/ She talks a lot about how trauma can affect a child’s brain development and how that plays into their subsequent behaviors and ways of functioning that you may find interesting.

      • on ,
        Jenny Detzel said:

        Thank you for this site! I really liked her article about her son not feeling “good enough” . That is a lot to ponder, since we spend much time in therapy etc. Thank you for your blog,. I’ll be reading!

        • I’m glad you liked Brenda’s site. She’s got some great stuff on her blog.

          I usually don’t write about parenting stuff on my blog, unless I’m inspired to do so and then not on any set schedule. It’s sort of random that way. Regardless, I’m glad you stopped by and commented and hope you’ll enjoy some of the other stuff I write about.

  10. on ,
    Marcia said:

    Tami, you are such a loving and committed mom. You are amazing! Happy Mother’s day a bit early!

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