This post is brought to you by the fact that I don't have a Facebook account. I read an article and it resonated with me. I desperately wanted to read the comments but a Facebook login was required to do so. Facebook just isn't my scene so in order to explore this topic further, I am throwing it out to all of my old familiar friends in the blogosphere.
The article I'm referencing is called "I Am Not My Child's Therapist" and it was published on The Mighty (click here). The author, Heather Kirn Lanier, has a daughter with special needs. She references how therapists who visited her home during the first year of her daughter's life often left her "handwritten lists of therapeutic tasks" that she should do with her daughter each week, and sometimes, this reduced her to tears. She recounts how the pressure to set goals and push her daughter towards these goals interfered with her primary role as a mother. She writes, "The goal of making her different stole energy from the duty embedding in my very DNA: love her. Love her as she is. Just love her."
Perhaps this article struck a chord with me because just one week ago, our whole family packed up and traveled to Gillette Children's Hospital in St. Paul, Minnesota, to have Josie examined by their renowned orthopedic team. I wanted to find out if Josie's gross motor delays (at age six, Josie doesn't run, jump, or climb) could be attributed to a physical disability beyond Down syndrome. I wanted to see if there is something we possibly overlooked. Is there an physiological abnormality that prevents her from being able to do the things that other children her age with the same diagnosis easily do? Is she in pain?
We waited months for the appointment. We traveled a significant distance with 3 small children. We stayed in a hotel. Travis took the day off of work. We reviewed the gait lab pamphlet with Josie and prepared her for what she was about to face. After an x-ray and a thorough examination by a pediatric orthopedic surgeon, we were told that there are no physical abnormalities and that Josie's gross motor delays are nothing beyond Josie taking her time to reach her milestones at her own pace. He suggested that we keep Josie enrolled in physical therapy. He suggested continuing to offer her diverse opportunities to explore movement in the hopes that something motivates her to be less sedentary.
On the way home, I apologized to Travis for making him take the day off of work and for wasting his time. He refuted that it wasn't a waste of time because we got reassurance and peace of mind. But I couldn't help but wonder if this was a sign that I've become too proactive/pushy/aggressive. Should I step back and just accept Josie as she is? Let Josie be Josie? Why am I always trying to advance her skill acquisition in every possible area? Am I a special needs "stage mom"? Do I just need to back the hell off?
Enter Ms. Lanier's article which stirred my neurotic pot that was already approaching a rolling boil. Where, exactly, is the line between "You can do it!" and "You do you."? I sought insight from several trusted friends; mothers and siblings of individuals with special needs. Each person offered unique perspective on the situation. And I hope they'll forgive me if I anonymously quote them:
1. I draw the line when my gut tells me it's more about me than him [son with special needs]. If I feel the least bit like I'm trying to fix rather than help, I know I'm doing it because of me.
2. I am not a home educator. I hated the speech therapist who sent home countless worksheets. His old therapist recommended various games and activities so all the kids were just playing together. My son loves board games. He hates worksheets. It wouldn't really be quality time for us.
3. I'm on a mission to help mold all of my children into the best little people that they can be and if that means that my daughter needs a little extra help, well then that's what she needs! If you can help to give her that extra leg up in life, then why wouldn't you?
4. Stuff I do on a daily basis is over enunciate my words to prompt her speech, count everything, show her letters and words when I see them. I guess I don't consider that therapy. But at the same time, I do it way more with her than my other kids, that's for sure.
5. While I appreciate not wanting your life and your child to be judged on you becoming PT or OT, if you don't have the repetition, then it's not becoming a learned behavior.
6. It doesn't have to be "fixing," it's about encouraging and not enabling them to be less than they can be. It goes for all kids. If I don't expect my [typically developing] son to do well in school, he will slack and he will live at home forever.
As Lanier questions, is it our job as parents to be our childrens' educators and therapists? Are we measuring our success as mothers by our child's outcomes? Are we promoting development or trying to make our children different? Is this issue exclusive to raising children with special needs?
As always, your comments are welcome...
Do you consider enrichment classes and cooking videos for Merryn in the same vein? I see you encouraging your children to be the best they can be. Measuring their development on a scale defining your "success" as a parent is when things become dicey. You and Travis are doing a great job with your girls.ReplyDelete
Worrying because your child isn't reaching the same milestones when others with DS are isn't needless worry. I mean, it may be for her individually - I just mean in general. ALL parents do this. Our firstborn was sitting unassisted at 4 months. My friend whose baby was 1 week older was always comparing her preemie to my 41 week baby. Parents compare. While she was fearing delays in her own child, I was fearing that my daughter reaching milestones early surely meant she was autistic. Parenting = worry.ReplyDelete
I have no special needs children, and sometimes I find myself feeling inferior around some moms with kids who are more mature or skilled. I notice I will start correcting my child. Thankfully, I usually realize my child is fine because ALL of us are different. My kids shouldn't have to perform a certain way in front of someone to make me feel good.
I am a homeschool mom and it becomes overwhelming with 4 kids trying to be mommmy AND teacher, so I can't imagine having to be mommy AND PT, OT, etc. I'm sure it's way more exhausting mentally because its not a daytime thing - it's 24/7.
From everything I've seen on the blog, I've always been impressed with how smart Josie is! My niece with DS could do all sorts of gymnast moves when she was little and some sign language, but she didn't know all her colors and alphabet and numbers like Josie has for a long time now as far as I can remember! As a parent, it's so hard to distinguish between our kids really not being able to do something and grasp a concept or them just being plain lazy because kids smartly know what they can get away with! Lol
I so struggle with this. I want him to have all the resources available but I also want him to be a kid. And I don't want him to look at me as an annoying therapist who makes him do therapy instead of his mom who loves him no matter what.ReplyDelete
If you are working on life skills that make their life more productive, easier, broader, etc. then I don't see how you can go wrong. Just like you might help a typical child practice math facts so they don't flunk 3rd grade, you might help your special needs child learn to tolerate a bath, eat more varieties of food, not walk on their toes, etc. Now, I much prefer therapists do most of this work since usually my kids are fairly against whatever is we are trying to overcome but I can't really afford the kind of therapy that would come into my home and over several hundred nights convince my child that the bath water is safe or follow her around and say, "heels" every time she's on her tiptoes. Here's where I draw the line (when I'm not being ridiculous), I ask myself is this a life skill that if you don't have it will make life a lot more difficult/dangerous/limiting. For instance my extremely hyperactive son has something against coordinated gross motor activities (randomness he can do), so riding a bike and swimming were a total no. With the biking (since the rest of us like to bike) I just bought him a big trike that a 7 yr old can ride and let the ability to ride a 2-wheeler go. With swimming I found a place that would be patient with his sensory issues and we tried for about a year, then we took a year off to let him develop more since his progress was almost nonexistent. We will keep revisiting the swimming though since not being able to swim makes life more dangerous, but he doesn't have to ever learn to ride a bike without training wheels unless he decides it's important.ReplyDelete
This post really struck a chord with me. I have a 30 year old godson who has autism and cerebral palsy. Before I became his godmother (it's fun to have a godson the exact same age as you are!), I worked as a behavior assistant in his home, so my relationship with him began in a very therapeutic setting. I am a Board Certified Behavior Analyst (I was not his BCBA, I became one through the years while working as a behavior assistant with him) and have my masters degree and many years of experience in Special Ed. After many years working with him, I became a really good friend to him and decided to end my "professional" relationship with him for many reasons both personal and professional. Now I am simply a close friend and I spend time with him socially and as a natural support to him. I constantly struggle with the balance of just being his friend and continuing to support him and help him live his best life. I obviously adore him as he is, and as an adult, most of his "developmental stages" have either been met or the typical timeline for achieving that stage passed so many years ago that many have assumed that he won't reach those milestones. He has very limited communication abilities and needs support throughout his entire day to keep him safe and functional. I am constantly asking myself if pushing him to learn or do more means I am rejecting the man he has become. On the other hand, I am a friend who has the skill set to help him achieve more. Shouldn't I offer him that support and help him it?ReplyDelete
The best way I have found to make it work is to blend the two together. Unconditional love and acceptance but also support and guidance as needed. Don't we all have those friends in our life who push us to do more and be better? I also make sure that everything I do that takes me into "therapist mode" is something that will better his life and is something that he, as an adult, is interested in achieving.
I think the bottom line is that every child/adult with a disability is different and every family dynamic is different. You have to do what feels right for you and what works for your relationship. For what it's worth, in my personal and professional opinion, I think you are an incredible inspiration to many and a great model to parents on how to provide supports to your children, both with and without that extra chromosome!
I had to get on the computer rather than on the phone to answer this one!! I have commented a few other times. I am a pediatric physical therapist. I have worked in a school, in a rehab hospital, as a medical home based therapist and as an infants and toddlers home therapist.I have also worked as a volunteer counselor at an MDA summer camp, and provided home consults for people with various neuromuscular diseases.ReplyDelete
I have been a therapist for 30 years.
I believe that the parents are parents and I am a therapist, and we are a team. I know more about development, therapy interventions, facilitation, etc. You know more about your child. I can teach you things to do with your child that will help your child, and sometimes they are very important things that really do need to be done. At other times they are things that could help, but will not "make or break" your child's achievement of a skill. I try very hard to only give people what they ask for, not to push too many activities or tasks on them. I try to make them feel like it is okay that they did not get to work on things during the past week, that it is okay to ask me to show them again how to do something that I can do with one hand tied behind my back.
I had some fabulous mentors early on that helped me to understand that people have a lot on their plates, being their child's therapist is not their only task during the day. If I put too much on them, they feel guilty, sometimes do not want me to come any more, etc. That is not a good thing for anyone. But sometimes people want to know more, do more. If that is the case, I am happy to give them more information, more activities etc.
But sometimes people do not believe that the little things that I might ask them to do will make a difference, because they seem so small and insignificant to them. So sometimes they are shocked when the next week I say " did your work on xyz?" and they say yes, can you really tell?! And I say yes, I see this positive change. That is why I trey to keep my requests small and hopefully doable, because just a little bit of practice can sometimes make a huge difference.
I also have learned a TON from families over the years. Wen a person is dealing with something every day, they often come up with fabulous creative solutions to the issues they are facing. And I unabashedly steal their ideas and teach them to someone else!! Always giving credit that it is not my idea, that I learned it from another parent!
Are we measuring our success as mothers on our child's outcomes? I think we do. Doesn't matter if our kids have special needs or not, we feel responsible for their behavior, their successes and failures. We shouldn't, but we do. We want the very best for our kids and if we know they can achieve it, we push them to the limit. Sometimes ruining relationships along the way. It's a tough line to walk, trying to know when to encourage and when to back off. (It only gets harder when they become adults.) :)ReplyDelete
Hello- Long time follower, first time (maybe second?) poster.ReplyDelete
Totally agree with #6 above. I push my children to be the best they can be; it's important to note that my son's 'best' is different than my daughter's 'best', as it is with children across the board. He would be all too happy to do what comes easy, rather than work on areas he needs improvement.
I take a long hard look in the Mommy mirror when my encouragement/reminding turns to nagging, or when both my child and I are in tears from frustration. I think you're absolutely doing the right thing by working on forward progress in a range of areas. And bravo for the self evaluation- that's the only way to make changes for everyone's benefit!
I work in a school, and some of my most difficult moments are when parents throw their hands up about their child. Keep encouraging, keep working, and pretty please, keep posting!! :-)
I love this. I really do feel guilt and pressure to "do more" with Thea (five, has down syndrome). When my two oldest were small, I did read aloud a ton, count everything, point out letters, etc. I do that with Thea, and it's just a longer phase. I'm conscious of working on jumping and such, and will take every opportunity to let her jump off the curb, or over the lines, or to walk across the edge of the driveway. I think I would do that with any kid. But her therapists send home tons of things to work on, and I'm exhausted. I like the idea of being ok with her being her, and me being her mother. Conscious of natural things to work on, but not stressing over it. I guess the exception might be things that are hindering her from doing what she wants to do. She would like to go to VBS, or take ballet, or stay at the ikea playland, but they require potty-training, so we're working on that now. Clearer speech helps her interact with peers and grandparents so we're working on certain words that she struggles with but uses a lot.ReplyDelete
I don't think it's about how much you do, but the price that you and your child pay for doing it. If, as in the post by Fiona's mom, you're finding yourself in tears about what you're being asked to do for your child, then it's too much for you. If your child is showing signs of excessive stress, like worsening behavior, then it's too much for them.ReplyDelete