by Band Back Together | Jan 1, 2016 | Autism, How To Help A Parent With a Special Needs Child, Special Needs Parenting |
I hate skiing. I really do. I don’t like the cold, the snow or the clunky equipment. Still, some eight years ago I brought Sam up to the mountain to attempt skiing with Special Olympics. Truthfully, I was kind of hoping he would hate it. I could then say we tried and move on with my good mother halo intact.
The plan for the first night was to get a feel for the equipment. Sam popped his boots into the skies and intuitively bent his knees and found his center of gravity. I remember saying, hey that’s great, enough for today, we’ll come back another day. But Sam looked up at the big mountain, “Want ski!” That isn’t the kind of statement you can ignore, particularly when it comes from a kid who barely talks. That began eight years of the mad Tuesday night dash to Wachusett Mountain where Sam worked with wonderful volunteer coaches like Melissa, John and Dave and in earlier years, Maureen, Lynn, Kevin and Ken. Each taught Sam something important. With their help Sam quickly progressed to the chair lift.
I remember the first time he fearlessly skied down the mountain sporting a grin bigger than his face all while reciting “Green Eggs and Ham.” Everyone cheered. And so we continued. Saturday we completed our eighth finals at Wachusett with teams from all over the state. The waiting room was noisy, confusing and congested with people: your basic nightmare for a kid with autism and lots of sensory issues. Somehow Sam rose to the occasion, displaying a tolerance he typically can’t master. He patiently waited in the start position at the top of the hill for over 30 without loosing his cool. He cheered through endless awards despite the background din of a few hundred people and the reverberations of a noisy microphone.
I mentioned to one of the other moms at the beginning of the finals that Sam really didn’t care about the metals or winning. We participated for the weekly ski practices. But I watched Sam as the day progressed and I saw something different. I saw tolerance and perseverance. I saw pride. It is true Sam wouldn’t mind if everyone in the room got a medal except him. It wouldn’t even slightly dent his self-esteem. But that isn’t to say he doesn’t like metals. This year he won three. A bronze, silver and finally a gold. Each time he went up to retrieve his medal he stood on an increasingly higher pedestal. Each time he smiled more broadly. By the third trip up he glowed.
To every coach, volunteer, mom and dad who offered kind words or an encouraging smile over the last eight years: You’ve converted me. No, you’ll never see me anywhere except the base of the mountain, it’s true. But you have made every trek to the mountain worthwhile. And I can’t thank you enough.
by Band Back Together | Oct 22, 2015 | Asperger's Syndrome, Autism, Grief, Help For Grief And Grieving, How To Help A Parent With a Special Needs Child, Parenting, Special Needs Parenting, Speech Disorders |
I am the mother of identical twin sons. They turned two in November.
At 12 months, they seemed to be moving right along in their development. They were walking, starting to say words; everything seemed fine. I was a little worried they were late in talking, but they were talking, so that was something. By 15 months, they still had very few words but they were both doing some signs and also had a full repertoire of “action” songs in their arsenal. By 18 months, there were no words. None. No signs. No action songs.
Everything was easily explained away as a boy-thing, or a twin-thing, or an identical-twin thing.
We tried not to worry.
Friday, they had their first visit with Early Intervention. I wanted to get their speech back on track as soon as possible. Language delays were our number one concern. Of course, in the back of our mind, we’d thought about autism, but we weren’t going there unless we had to. It’s too difficult.
After thirty minutes of watching the boys “play,” and watching their interactions with me, the Early Childhood Development teacher and the Speech Pathologist, there was an early diagnosis of sorts. They weren’t as concerned with the language as they were all of the other things: they didn’t really play with their toys, they didn’t really interact with, well, anyone in the room.
Early Intervention wanted to proceed with autism evaluations.
The next thirty minutes involved me, sitting on a chair nursing my four-month old. Trying to not to break into an ugly cry, trying to keep it together and sound somewhat intelligent until I could get all of these people who just brought my whole world crashing down, out my door.
My sons are perfect.
And I don’t know how to fix them.
by Band Back Together | Oct 10, 2015 | Anger, Anxiety, Attention-Deficit Hyperactivity Disorder, Denial, Developmental Milestones, Family, Feelings, Help with Parenting, How To Help A Parent With a Special Needs Child, Impulse Control Disorders, Individualized Education Plan, Parenting, Special Needs Parenting |
In kindergarten, my daughter was singled out by her “crazy old lady/about to retire” teacher who said Maddie was “very inattentive and probably needed to be evaluated for ADD.”
I was all, “this women has a whole SEVEN kids to look after with a damn assistant! She obviously is lacking and totally sucks at life to not be able to handle SEVEN kids and she’s the one who needs to be evaluated. “
Unable to even fathom such a thing for my perfect little princess, I took her out of the expensive private school and started first grade in the public school. The local school a few blocks away is really new and great and shiny!
First grade began, and she seemed to be doing well until our first Parent/Teacher conference. Once again, ADD was brought up by her very young, energetic teacher.
Again, I couldn’t wrap my brain around this possibility. My daughter was so caring and sweet and there was no way in living hell there was something wrong with her!
But I relented, and took her to see the pediatrician armed with a heavy dose of internet literature regarding the scary ADD possibility. What I didn’t expect was to identify with most of the symptoms listed on the checklist.
So, with a heavy heart, I accepted that yes, my little angel was indeed struggling in school. She was beginning to show signs of a low self-esteem as a result of her poor behavior. She was showing the insensitiveness that comes with a child with ADD. She was unable to see how others may feel. She was pretty self-centered.
I waved my White Flag and tried to stop feeling sorry for myself or guilty for something I could have done to prevent this from happening. I gave up the idea that my daughter would be a stellar student and be the top of her class. I mourned (seriously GRIEVED) the possibilities I had built up all through her early years of how magnificent she would surely be. I shed real tears and experienced a heartbreak that I didn’t think was possible.
I felt extremely defeated until I buckled down and became her advocate. I fought long and hard to get her school to become involved in her special education program that would work for her. I went full speed ahead with every behavior modification the school could provide that might make a sliver of a difference.
Over the years, she was given an Individualized Education Plan (IEP) with in-school modifications for test-taking and a more thorough explanation for her assignments. Her seat was moved in order to minimize distractions and although she continued to struggle, she was really improving.
Along with the modifications, we began trying medication. I was overjoyed when we finally found one that really helped her without the harsh side effects. This process was heartbreaking, but we found the one that works for her and for this I am grateful.
So now, here we are in the fifth grade. Report card comes home and finally there are mostly B’s on it. There are two C’s, but compared to last year when she was mostly C’s and D’s this was such an amazing moment for me and her to see everything we were doing was paying off!
I was so excited that I wanted to dance around the room; this was not something that I am used to. This was something that has taken so long. I didn’t even it was possible to see a report card such as the one she got today.
After saying all of this, maybe you can understand why, after sharing with you my pure bliss, I would be upset when you complain to me, a whopping two minutes later, about the one B your daughter received on her report card when every other grade was an A. How I got frustrated, left the room and didn’t want to show you my daughter’s report card.
I do not make this a competition, as you so rudely accused me of. I would never have those sort of expectations for my daughter after every hurdle we have been through to get her to this point. That would just be unrealistic.
I know that your daughter is two years younger than mine and is enrolled in all advanced math and reading classes. I know that she is a very bright little girl and I would never ever try to diminish that! But I had a happy moment and you just don’t understand how complaining about that one B would make me feel. Here I was rejoicing all the B’s that were on Maddie’s report card and you were looking down on that very same grade; the one flaw on your daughter’s perfect grades.
So, just when I think we know everything about each other I suppose you don’t really know the entire story of the ADD path. And I don’t even know how to make you understand.
When you told me I was turning it in to a competition, it felt like a slap in my face. It showed me that your perception of me is way off. So now what? How do I make this better? After three and half years together, I love you. But I need you to be on my team with this. Not accuse me of a competition.
I wanted you to jump up and down with me and celebrate this victory.
by Band Back Together | Oct 22, 2014 | Anxiety, Anxiety Disorders, Coping With Anxiety Disorders, Generalized Anxiety Disorder Resources, Genetic Disorders, How To Help A Parent With a Special Needs Child, Maple Syrup Urine Disease, Parenting, Special Needs Parenting |
My daughter brought home her first trimester report card yesterday. She got all A’s and B’s, which I know will make her grandparents proud. I’m proud too, of course. But….
I read more than the report card. I read her progress report on her IEP goals. The report that says she’s making “slight progress” in her language arts and math classes. These are classes she takes in the cognitively impaired (special ed) room. The report also reminds me that she reads at a third grade level in some areas, and at a first grade level in others. She’s been at a third grade level since about fifth grade. She is in seventh grade.
This is when the anxiety creeps in again. When I start to worry about her future. Will she ever read at higher than a third grade level? Will she ever be able to do more than basic arithmetic? If she can’t take the standardized tests in high school, will she even get a diploma? College is likely out of the question, but there’s a tech school here in town through the school system, maybe she can go there?
Then there’s the jealousy. Hearing my friends and acquaintances kids’ read four grade levels beyond their age – skip grades – attend Big 10 colleges – earn all A’s.
Then I just try to focus on what’s happening right now. One day at a time. Push those worries back to that dark corner of my mind.
Until the next report card comes.
by Band Back Together | Jul 22, 2014 | Attention-Deficit Hyperactivity Disorder, Feelings, How To Help A Parent With a Special Needs Child, Parenting, Special Needs Parenting |
G., my five-year old, has weekly therapy sessions. Right now we’re using therapy to help manage his ADHD symptoms but I’m also hoping that it’s able to help with his inability to express his feelings or relate to other children. My husband recently sent me an e-mail mentioning that G. asked when N., my two-year old, was going to start going to therapy.
And it made me cry.
G. doesn’t know that he’s different. I hope that he never does. We’re taking the necessary steps to help him at an early age. But it is hard. It’s hard having a child that behaves and reacts to things in a way that I don’t understand. I know that some of it, of course, is his age, but a lot of it has to do with ADHD.
T-ball is a prime example. Yes, I know. They are five. Attention spans aren’t exactly what your average five-year-old is known for. But when his team is on the field, the other little boys watch the ball and chase after it while G. lets it roll on by because he’s staring at the sky…or picking grass…or laying flat on his back in the outfield.
I’m the type of person who likes routine. I want things to go the way they’re supposed to go and get stressed or anxious when they do not. I realize that is my issue, and I’m working on it.
Routine does not work well with G. Requests with multiple steps do not work with G. Trying to get him to focus on anything for more than a few minutes does not work with G.
I know how swimming lessons and gym class have gone. I know how he has responded to soccer and T-ball. School is still a bit of a mystery to me. I know he’s a sweet and charming child and I know that he does well with women he likes. I also know that Kindergarten is packed with activities which means that the kids are never at any activity for too long, although the lessons of the day are repeated throughout, just in different ways. So it’s probably ideal for him.
But still, I worry. I worry that he can’t tell me the names of any of the students in his class. I worry that he’s not learning what he needs to be learning. I worry that Kindergarten may be the easy part, and next year first grade is going to throw us for a loop. I worry because that’s what I do, but also because of who he is. I’ve been worried about school from the first day I suspected that he had ADHD.
I worry because I watched my brother grow up with ADHD, and I watched him struggle. Things like school and making friends were so much harder for him. My brother is doing fantastically now. He’s working on his Master’s Degree. He’s in a career suited to his interests and personality. And he is still best friends with his best friends from fourth grade. One of whom was the best man at his wedding.
I know that I am not alone. I know there are other parents out there dealing with the same issues with their children.
On the bad days, however, it doesn’t make it any easier.
by Band Back Together | Mar 12, 2014 | Bipolar Disorder, Caregiver, Compassion, Hope, Love, Loving Someone With Bipolar Disorder, Marriage Problems, Single Parenting, Special Needs Parenting, Teen Bipolar Disorder, Therapy |
I admitted my 10 year old son to a psychiatric hospital Wednesday night.
My son is mentally ill.
For years, I have apologized to people for who my son is. His behaviors or quirks were something that were spoken about quietly, like they were something to be embarrassed of – Like WE were embarrassed of him.
For years, I have defended myself, made excuses for a multitude of things – his medications, the therapies he receives, the fight for Special Education services, the way I choose to parent and discipline him.
Today, all of this stops. My son D is who he is. My job as his mom is to provide the best care for him that I can, to the best of my knowledge. I am not a sheep – being blindly led by psychiatrists and therapists. I do my research, and I am well educated about his associated Alphabet Soup diagnoses. He HAS to have medicine to function. I don’t let the staff at his school run over me at his Individualized Education Program (IEP) meetings. I am on staff at his school, plus I know the laws regarding special education.
D got the shitty end of the deal when it came to genetics. See, I understand the raging in his mind, and the lows where all you want to do is hide from the world in a closet. I have Bipolar Disorder, Type 1. So does his birth father. I am compliant on my medications. It took me 8 years to finally get it right. There were times I almost lost everything – my family, my job, my mind. I am grateful for those who stuck with me through the good times and the really dark, ugly times.
Everyone knows at least one person who suffers from mental illness. One in FOUR people in America suffer from some sort of mental illness. Yet, there still is a stigma.
Today, for my D and me – this WILL STOP. No longer will I apologize for his behavior to strangers in public because he is on overload or having a meltdown. I will no longer listen to people tell me that my child is on too much medicine. I will not let people tell me I baby him when I choose to talk him down from a rage rather than “spank that ass.” I will keep fighting for his equal treatment at school. He has a mental illness, but he is a bright, smart boy. I will love my child for who he is, not for what others think he should be. I will not listen to negative ex-husbands telling me that I am doing it wrong, when he is only with D four days a month and only is “Dad” when he wants to be.
Today the stigma will stop. Follow me on my and my family’s journey.
Peace.
