This year’s theme is Action Changes Things. One way to advocate for children’s mental health is by lighting up green in support of Children’s Mental Health Week this year. Parent/Professional Advocacy League has a toolkit for people to use. Toolkit materials are free. Posters can be downloaded. Some towns and cities will have CMHW public lightings.
Since 2002, the Governor of Massachusetts, has issued an official proclamation for Children’s Mental Health Week. Some Massachusetts mayors issue proclamations, too. Children’s Mental Health Week is dedicated to increasing public awareness about the triumphs and challenges in children’s mental health. It emphasizes the importance of family and youth involvement in children’s mental health.
In Massachusetts, Children’s Mental Health Week is sponsored by the Department of Mental Health and the Massachusetts Behavioral Health Partnership (MBHP), a Beacon Health Options company.
Here are some Children’s Mental Health resources that may be helpful.
Children’s Behavioral Health Initiative (CBHI) – Helps MassHealth children with behavioral, emotional, and mental health needs. Families can get integrated behavioral health services and a comprehensive, community-based system of care.
Massachusetts Behavioral Health Partnership (MBHP) – MBHP is here to provide you or your loved one with a full range of services to help with medical, mental health, and substance use disorder conditions.
As a pediatrician, I work with all children including those with disabilities. I hear how difficult it can be to get out the door in the morning. In this blog, I share tips for creating a morning routine to get out the door on time and with less stress. Most children do better when there are routines that are predictable and consistent, including children with Attention Deficit Hyperactivity Disorder and Autism Spectrum Disorders.
Learning a morning routine can be especially challenging for children with disabilities. They often need more directions, practice, and patience to learn these skills. Each family will need to change these tips to work in their home.
Plan Ahead:
Have your child pack his/her backpack and place it by the door at night. Make sure homework and projects are in the backpack. Creating a homework folder makes this easier.
When possible, pack lunches the night before.
Help your child pick out clothes the night before. This helps stop disagreements about what to wear.
Wake Up
Start backwards. Figure out what time you need to leave. Decide how long the morning routine will take. Give 10 to 15 minutes of extra time. That amount of time determines when to wake your child up.
Pleasant wake up. Have the alarm play a favorite song or wake your child up gently with a hug and cuddle. Harsh alarms or abrupt wake ups can start the day off poorly.
Getting ready
Create a get ready routine: Wake Up, Get dressed, Eat breakfast, Brush teeth, Review the day and backpack, Leave for school.
Get dressed first as this is often the biggest hurdle in the morning
Post a visual chart or checklist of each step. Laminate it or hang it in a plastic folder. Your child can use a dry erase marker to check things off when done.
Can use pictures of your child doing each step
If your child is more interested in music, create a playlist of songs. Each song goes with a different task in the morning routine.
Use a timer showing your child the time left for each step.
Getting Out the Door
Use a silly sound (a wolf howl) to warn your child 5 minutes before it is time to leave.
At first, you will need to use the sound and a warning “five more minutes”. Eventually just the silly sound will work.
Use a different silly sound (duck quacking) for when it is time to leave.
At first, you will need to use the sound and a warning “Time to go”.
Make It Fun
Praise your child for completing steps in the routine. At first, the praise should be IMMEDIATE.
Create rewards for following the routine. This can be a sticker chart or small prizes.
Your child can do a favorite activity as a reward if finish early. This can be very motivating.
No TV or tablet until your child is dressed and ready for school. If your child is ready early, he/she could watch a short clip.
Stick to It
Creating a new routine or habit takes 3 weeks. Work towards the same goal for 3 weeks.
Once you have mastered the morning routine, create a bedtime or homework routine.
My name is Shey Jaboin and I’m the parent of a child with disabilities.
If you are a parent and don’t know how to speak Englishwell, it’s hard asking for help. When you are a Parent and have a child with disabilities, it can be difficult to find services for your child.
We want you to know that there are a lot of places that want to help:
You can call your doctor to ask for help.
You can call the doctor of your child.
He can give you telephone numbers to call for services.
In Massachusetts,
They have different family support services.
You can call them. They can come to your house to see how to help you. They will ask you questions. They will give you papers to sign before they start helping you. Sometimes, these people have to send papers to your doctors before they help you. Don’t be scared.
These people are there to help.
Sometimes, a nurse from the agency will come to your house to check your child before they give you services.
Please remember thatyou are not alone.
They are parents and other people with disability who needed help too. They are helping others now.
They aredisability advocates.
They are making life better for people with disability. When you think you are ready, you will be helping other people with disability too. Connect with other parents who have children with disabilities.
Remember toconnect with otherdisability advocates. They are great. They help people like you and me.
Choices. Often, choices are good. But sometimes, as a parent of a child with Down syndrome, I must choose between two bad options.
My daughter is 13. In addition to Down syndrome, she has scoliosis, or a curve in her spine. She also has sleep apnea, where the back of her throat closes when she sleeps. Sleep apnea causes her body to wake her so she can breathe normally. But waking up so much makes her sleepy all day. The simplest treatment for my daughter’s form of sleep apnea is to sleep on her stomach to keep her throat more open and help her sleep better. The treatment for scoliosis is to wear a Boston brace. It’s a hard plastic device that gently pushes on her rib cage to keep her spine from curving more.
But wearing a Boston brace and sleeping on her stomach together add up to a sleepless night for my child. We work on it. We try to add time in the brace. We try to keep her from flipping on to her back as she sleeps. But after weeks of waking many times a night for both of us, I’m right back to the newborn days of 3 AM feedings and 4 AM diaper changes. My daughter falls asleep on the beanbag chair at school. I nearly fall asleep in the car line for school pick-up. No one is happy. Something must give.
We must make a choice between these two treatments, weighing the short term impacts and the long term impacts. Without the brace, the spinal curve may progress over time. If it does, my daughter may need spinal surgery. It’s a big “if”. But wearing it means she gets a terrible nights’ sleep, every night, and so do I. It feels too hard to weigh the choice between sleep now and the fear of possible surgery in the future. But the immediate need for more sleep wins, and we ditch the Boston brace.
We go for the sure thing -more sleep- and keep our fingers crossed that the curve in her spine doesn’t get worse. It’s a terrible choice to have to make. And there are no do-overs, no second chances. My daughter now sleeps well, but I still toss and turn some nights, second guessing our choices. I worry about possible surgery in the future. I wonder if we tried hard enough to make it all work at the same time. Did we make the right choice?
I am the mother of an 11 year old girl who has a developmental disability. My daughter needs lots of support. At the moment my daughter is stable, healthy and in a good school. Often times I think about her future and about her needs. I know I will be caring for her when she gets older. For me it is important that she receives good care. Also that she can be healthy and happy.
Impact
Parents caring for their children with special needs are very important. As parents, we have positive impact in helping our kids remain in their homes. We know what our kids need. We know what they like and what they wish. Our kids keep us positive. They give us energy every day. They make us happy when all is going well. Our kids give us lots of love.
Caring for ourselves
As parents we don’t count with much time. The most important things are our kids and family. Sometimes we forget about our own medical appointments. Going to our doctor may take us longer time. We are sometimes really tired. We need to try to make more time for our own needs. We need to try to go to our doctor’s appointments. Is important that we are well, so our kids are well too.
Sleep helps us learn well, behave well, feel well and stay well. Many children with neurodevelopmental disabilities [NDD] already struggle with learning, behavior and health. For them, sleep is particularly important. Children with NDD who sleep poorly have more seizures; take more medication; and have more problems with learning and behavior at school. [James Jan et al, “Sleep Hygiene for Children with Neurodevelopmental Disabilities,” Pediatrics 122: 1343-1350, 2008].
Though sleep problems are more common in children with NDD, there is “nearly complete absence of research” on the subject. In 2008, a group of experts recognized this and came together for the “first paper” on this topic. [cited above]
The experts raised concerns too about the parents of children with NDD. When children are up at night, so is everyone else. Parents of children with NDD are often very sleep deprived and have poorer health later in life. However, less than half of those parents talk to their doctors about sleep. This may be because parents of children with
NDD, especially children with night seizures or wandering, often sleep beside their children and may worry that their doctors will disapprove.
And what would the doctor recommend anyway? That all children need:
a bedtime routine that is regular and relaxing; and
a bedroom that is safe, quiet, cool, and dark
How does that advice apply to children with NDD? The experts recommend:
A very regular bedtime—many children with
NDD cannot tolerate more than a one-hour difference between their weekdays vs. weekend bedtime.
A relaxing routine—children with
NDD may not find typical bedtime activities relaxing. Children with autism may find baths upsetting, not soothing. The choice of bedtime stories may require extra thought. Reach Out and Read has a PDF about reading to children with
NDD at: Reading to Children with Disabilities
A safe bedroom—some children with
NDDs may be awake during the night and get into mischief or danger. Doctors might suggest a “posey bed” that has zippered netting to keep the child safely in bed. Parents of children with seizure disorders may want to ask about safety pillows and monitor systems.
A soothing space—children with NDD who are particularly sensitive to sound may benefit from white-noise machines. Those who have difficulty keeping a steady body temperature do well with ‘honeycomb’ sheets or pajamas made from special fabrics. Children with low vision may sleep better in a room darkened by ‘black out’ curtains, while others may be too anxious to sleep without a nightlight. Avoiding “blue light” from computer screens and TVs seems important for most children. Other adjustments to the type of lighting may also be helpful.
More honest conversations and more research is needed so everyone can enjoy a good night’s sleep.
I first “met” Lou Melgarejo when someone forwarded me a link to his YouTube video about his daughter, Bianca and their journey into the world of autism. As a parent, I struggled mightily over the years every time someone said “tell me about your daughter?”, “what is autism?”, “why is it so hard for you?”, and other basic questions. Basic questions which I never felt I could adequately answer.Lou’s video answers these – clearly, powerfully, poignantly. So now, instead of trying to answer these questions, I just send them the “Fixing” Autism – YouTubelink.
I later had the pleasure of meeting Lou in person, and began to follow his blog. Amongst the wonderful posts, is one called “Dad vs. Man”. The title is self-explanatory, but it’s a topic that’s infrequently discussed, and one I know many fathers struggle with.
We are honored that Lou has shared this. We welcome your comments, and invite you to forward this to fathers, mothers, grandparents, and anyone who loves someone with autism. Thank you Lou.
Being a dad doesn’t mean you can’t be a man. When you have a child with special needs, they need their dads to be as involved as possible. Being a dad makes you a BETTER man.
Some men feel that the two are mutually exclusive. Scratch that. Some women feel that way too, so I guess it is some PEOPLE feel that being a dad means you can’t be a man.
Why do I say this? I say this because to me it is almost like there is an opinion out there that a guy has to turn in his “Man Card” in order to be fully vested in their kids. By that I mean that they take part in and are an active participant in ALL of the day to day routines of their kid’s lives that their schedule allows.
It is a disturbing phenomenon that I see firsthand almost every day. In the vast majority of events, therapies and functions that I attend, I am one of the only guys if not the only man in the room. At first I chalked it up to my unusual work schedule; my days off are in the middle of the week which allow me to be really active in Bianca’s week. But I work nights when I do work, so I am able to participate in weekend activities as well… and again, I am in the minority by a LONG shot.
So how do we get more dads involved? What is it that allows some men the ability to be fully participatory, and others stand-offish providers? I am sure Freud would have a lot to say on that subject. I wish I could tell you why it is that I look at my kids and want to do everything with them, while other guys can’t wait to get out of the house and escape. All I can do is re-assure the other men out there that being an involved dad does not make you any less of a man.
Sometime I fear that when a person is moved by one of my blogs or videos, they build up a false impression of who I am and almost emasculate me. I think that is a natural reaction but I don’t want to portray myself as something I am not. Maybe by talking a little bit about who I am as an Autism Dad, other men may feel comfortable enough to become more active in their child’s life.
So let me tell you about myself. I am fiercely family-centric. I put my family before anything, but I also make certain that I allow time for myself. I have the incredible good fortune of working in sports entertainment television. So when I go to work, I take the “Autism Dad” hat off and go into full sports geek mode. I enjoy testosterone heavy debauchery. I love going out with my guy pals and doing guy things just like any other man. I have a horrible fantasy football team with a funny, but dirty name. We were winless this year… thanks Jamaal Charles! I am so glad I decided not to keep Frank Gore this year to go with one of the few every down backs in the NFL.
I enjoy going to bars with the guys, but I don’t drink like I used to when I didn’t have responsibilities or a 45 minute drive back home from where we would hang out. I love dirty comedians and humor that walks the edge and makes me squirm. I have a thick skin and can understand the difference between a joke and an insult. I am a HUGE Howard Stern fan and have listened to probably every show in its entirety for close to 15 years.
I make time for my heathen activities, but it is in moderation. You have to have balance, but when it comes to balancing a family, the scale has to tip largely in the families favor. I do nothing without thinking of my family first. They are what is important and help to define me as a human being and keep me grounded. Also, they NEED me.
Particularly when talking about kids on the spectrum, an active father is VITAL in their development. We are talking about kids that usually have socialization problems so they need every interaction they can get at any given moment. They need help in pulling themselves out of their isolation that is ASD.
I was never a great hitter in baseball, so I have no clue what it is like to hit a homerun. I have never experienced dunking a basketball. I can only imagine that being able to do either one of those feats makes you feel like a king. You know what gives me that same kind of juice? Receiving an unsolicited hug from my daughter, Bianca signing that she wants to eat or when she REALLY wants a particular thing to eat… asking for it, my daughter using the toilet and signing the word “potty”, and on the rare occasion that I get an “I love you” out of Bianca… forget about it. That is like winning the Super Bowl.
I know having a kid with special needs is tough on a man. We have to fight a million urges every day to put things right. We put enormous amounts of pressure on ourselves to fix things that we perceive to not be right. We deal with stress in a very different way than women. We aren’t talkative by nature and when we do talk to our other guy friends; it is rarely about something as deep as the tougher moments of raising a kid with autism or the like. We usually talk about (stand by for a shocker ladies) sports, women, more sports, jokes, entertainment, and did I say women and sports? So basically our conversations are knuckle-dragging, not-so-intellectual type stuff. We rarely vent our concerns and frustrations about the real challenges that we face in life. When I do bring something up about an issue or challenge to one of my closer friends, it is usually in a less than politically correct manner. We have the kind of relationship where subtext is completely understood, so I can joke about my life with him in ways that I can with nobody else. That is a vital relationship and helps to keep me sane.
If the man is not a “fixer” he might be a “provider type”. These dads are the types of guys that feel that the solution to the problem is to just work themselves to death providing for the family. This is good for the family from an economic perspective, but I have found in my observations that it is the least rewarding or impactful in terms of bonding with your children. Kids don’t really get that “daddy is gone because he loves you”. Kids just think that all the stuff in their house was free anyway. At least that is what they think during the most important years of development. Even if you try to explain the importance of money and how it is gained and used, if you were to ask your child would he/she rather have daddy go to work or stay home and play with them, I guarantee you the vast majority of the kids are going to choose the quality time with dad.
To be fair, many dads caught in the provider role share that sentiment. The problem is that they feel trapped and are convinced that the time away from the family and earing the paycheck are for the greater good of the familial unit.
I beg to differ.
Men are not the only ones responsible for perpetuating the checked-out dad. Wives have a bit to do with it as well. Whether it is that the wife feels like there is not an open line of communication to tell the father that she would like him to be more involved, or she thinks he has too much on his plate providing for the family, or she just enjoys cashing in the checks, many moms just accept the status quo as is without complaint. I encourage women to talk to their husbands and express your concerns. It may be difficult for the guy to understand, he may be defensive but if you perceive that he is not engaged enough in your child’s life you owe it not just to the child to inform his/her father… you owe it to the father as well.
One way not to approach your man if you feel he needs to be more engaged is by comparing him to dads around you that you see as being more vested. I am aware of it happening with other couples that we have interactions with and this does not go over well. In fact, it usually results in the man distancing himself even more. Just tell him what YOU need and what you believe your child needs. Honesty is key.
I really hope that something clicks and I start to see more men at functions and taking their kids to therapy. It is going to be 2012 and I think we can get involved without it hurting our street cred. Plus it would be nice to be able to vent to another guy about how much Jamaal Charles’ torn ACL stinks in a keeper league, how funny Mike Judge was on the Stern Show, or who I would rather be stuck on a deserted island with for all of eternity, Salma Hayek or Sofia Vergara.
“My Child was diagnosed with autism yesterday. The clinic gave me a huge packet of information. The resource specialist told me the first call I should make was to your Resource Center to figure out my coverage.”
At the Autism Insurance Resource Center, this is a typical call. And while our mission is to provide information to help families understand their insurance, sometimes what I really want to do is reach through the phone and just give them a hug. I want them to know that, even though it might have taken all their strength this morning just to get out of bed and put one foot in front of the other, there’s so much to be hopeful for, and it gets easier. Really, it does.
So after I’ve helped them navigate their insurance, I tell them that I’m a Mom who’s been there. I know what they’re going through. And I tell them that, if they have one ounce of bandwidth left, they might want to check out Diary of a Mom, by Jess Wilson.
So for our first blog of this month, I’m delighted that Jess has shared one of her many brilliant posts “Welcome to the Club”. Because in my opinion, no one says it better than she does. Thank you, Jess.
photo by Kathleen Connerton
May 1, 2009
My dear friend,
I am so sorry for your pain.
Don’t worry; no one else sees it, I promise. To the rest of the world, you’re fine. But when you’ve been there, you can’t miss it.
I see it in your eyes. That awful, combustible mixture of heart-wrenching pain and abject fear. God, I remember the fear.
I see it in the weight of that invisible cloak that you wear. I remember the coarseness of its fabric on my skin. Like raw wool in the middle of the desert. You see, it was mine for a time.
I never would have wanted to pass it on to you, my love. I remember so well suffocating under the weight of it, struggling for breath, fighting to throw it off while wrapping myself in its awful warmth, clutching its worn edges for dear life.
I know that it feels like it’s permanent, fixed. But one day down the line you will wake up and find that you’ve left it next to the bed. Eventually, you’ll hang it in the closet. You’ll visit it now and then. You’ll try it on for size. You’ll run your fingers over the fabric and remember when you lived in it, when it was constant, when you couldn’t take it off and leave it behind. But soon days will go by before you wear it again, then weeks, then months.
I know you are staring down what looks to be an impossibly steep learning curve. I know it looks like an immovable mountain. It is not. I know you don’t believe me, but step by step you will climb until suddenly, without warning, you will look down. You will see how far you’ve come. You’ll breathe. I promise. You might even be able to take in the view.
You will doubt yourself. You won’t trust your instincts right away. You will be afraid that you don’t have the capacity to be what your baby will need you to be. Worse, you’ll think that you don’t even know what she needs you to be. You do. I promise. You will.
When you became a mother, you held that tiny baby girl in your arms and in an instant, she filled your heart. You were overwhelmed with love. The kind of love you never expected. The kind that knocks the wind out of you. The kind of all-encompassing love that you think couldn’t possibly leave room for any other. But it did.
When your son was born, you looked into those big blue eyes and he crawled right into your heart. He made room for himself, didn’t he? He carved out a space all his own. Suddenly your heart was just bigger. And then again when your youngest was born. She made herself right at home there too.
That’s how it happens. When you need capacity you find it. Your heart expands. It just does. It’s elastic. I promise.
You are so much stronger than you think you are. Trust me. I know you. Hell, I am you.
You will find people in your life who get it and some that don’t. You’ll find some that want to get it and some that never will. You’ll find a closeness with people you never thought you had anything in common with. You’ll find comfort and relief with friends who speak your new language. You’ll find your village.
You’ll change. One day you’ll notice a shift. You’ll realize that certain words have dropped out of your lexicon. The ones you hadn’t ever thought could be hurtful. Dude, that’s retarded. Never again. You won’t laugh at vulnerability. You’ll see the world through a lens of sensitivity. The people around you will notice. You’ll change them too.
You will learn to ask for help. You’ll have to. It won’t be easy. You’ll forget sometimes. Life will remind you.
You will read more than you can process. You’ll buy books that you can’t handle reading. You’ll feel guilty that they’re sitting by the side of the bed unopened. Take small bites. The information isn’t going anywhere. Let your heart heal. It will. Breathe. You can.
You will blame yourself. You’ll think you missed signs you should have seen. You’ll be convinced that you should have known. That you should have somehow gotten help earlier. You couldn’t have known. Don’t let yourself live there for long.
You will dig deep and find reserves of energy you never would have believed you had. You will run on adrenaline and crash into dreamless sleep. But you will come through it. I swear, you will. You will find a rhythm.
You will neglect yourself. You will suddenly realize that you haven’t stopped moving. You’ve missed the gym. You’ve taken care of everyone but you. You will forget how important it is to take care of yourself. Listen to me. If you hear nothing else, hear this. You MUST take care of yourself. You are no use to anyone unless you are healthy. I mean that holistically, my friend. HEALTHY. Nourished, rested, soul-fed. Your children deserve that example.
A friend will force you to take a walk. You will go outside. You will look at the sky. Follow the clouds upward. Try to find where they end. You’ll need that. You’ll need the air. You’ll need to remember how small we all really are.
You will question your faith. Or find it. Maybe both.
You will never, ever take progress for granted. Every milestone met, no matter what the timing, will be cause for celebration. Every baby step will be a quantum leap. You will find the people who understand that. You will revel in their support and love and shared excitement.
You will encounter people who care for your child in ways that restore your faith in humanity. You will cherish the teachers and therapists and caregivers who see past your child’s challenges and who truly understand her strengths. They will feel like family.
You will examine and re-examine every one of your own insecurities. You will recognize some of your child’s challenges as your own. You will get to know yourself as you get to know your child. You will look to the tools you have used to mitigate your own challenges. You will share them. You will both be better for it.
You will come to understand that there are gifts in all of this. Tolerance, compassion, understanding. Precious, life altering gifts.
You will worry about your other children. You will feel like you’re not giving them enough time. You will find the time. Yes, you will. No, really. You will. You will discover that the time that means something to them is not big. It’s not a trip to the circus. It doesn’t involve planning. It’s free. You will forget the dog and pony shows. Instead, you will find fifteen minutes before bed. You will close the door. You will sit on the floor. You’ll play Barbies with your daughter or Legos with your son. You’ll talk. You’ll listen. You’ll listen some more. You’ll start to believe they’ll be OK. And they will. You will be a better parent for all of it.
You will find the tools that you need. You will take bits and pieces of different theories and practices. You’ll talk to parents and doctors and therapists. You’ll take something from each of them. You’ll even find value in those you don’t agree with at all. Sometimes the most. From the scraps that you gather, you will start to build your child’s quilt. A little of this, a little of that, a lot of love.
You will speak hesitantly at first, but you’ll find your voice. You will come to see that no one knows your child better than you do. You will respectfully listen to the experts in each field. You will value their experience and their knowledge. But you will ultimately remember that while they are the experts in science, you are the expert in your child.
You will think you can’t handle it. You will be wrong.
This is not an easy road, but its rewards are tremendous. It’s joys are the very sweetest of life’s nectar. You will drink them in and taste and smell and feel every last drop of them.
You will be OK.
You will help your sweet girl be far better than OK. You will show her boundless love. She will know that she is accepted and cherished and celebrated for every last morsel of who she is. She will know that her Mama’s there at every turn. She will believe in herself as you believe in her. She will astound you. Over and over and over again. She will teach you far more than you teach her. She will fly.
You will be OK.
And I will be here for you. Every step of the way.
