I also remember as a child going to buy something , not having enough money and having to put it back on the shelf. Sometimes I went to the local corner store and bought milk and bread. It was a great feeling when I was the kid chosen to go in alone.  It was a game to see who would get to go walk a mile to go get the milk  and if you were given that level of trust.  If you walked, you could also get a piece of candy. My mom and grandparents were crucial in teaching me life skills at a young age. If anything, I was taught more and at a younger age than I teach my own kids.

When you have children with special health care needs, life skills and social skills come only when it’s time. It is hard to determine what to teach when. I continue to look for that elusive manual that tells you when to teach your child how to go in to the store alone and trust that they know enough not to eat the candy that they do not have money for.  I continue to wonder when to teach my son how to go into the post office and buy stamps alone and add up how much it will cost. He looks at me and says, “Can’t you just buy them online and it will add it for you?” Yes, of course, but I am trying to teach life skills, not the skill to google the world. That is taught enough.

There are wonderful authors who have written about life skills and social skills and you can download lots of ideas.  But it’s hard to teach the emotions, behaviors and understanding that it takes to make a cake, do the dishes, know how to complete a recipe, or clean the kitchen. It is even harder to teach going into a store alone, the post office, bank and/or ordering pizza in person or on the phone. It takes skill, practice and a lot of repitition for any kid as well as clear directions and teaching of the steps.

It has been an eye opener for me over the past few months. My son moved home from residential. His emotions are in check. He is able to talk and let me know when he feels I have not heard him. For social skills and emotional regulation, he gets a B plus.  He continues to struggle with being able to go into stores to get milk. We’ve discussed where the coolers are so that he could remember. He has refused to order a pizza on the phone because, well, that is just too hard. Life skills continue to be a struggle daily. But with practice he will catch up . He is determined and so am I.

My middle son, the community child, has done an amazing job learning life skills. Ordering a pizza is no problem, cooking dinner- no issue, and clean – got it! He makes complete dinners and has for the last 4 years. Loves cooking since age 11. He can also do the stamps on the bills and knows where to put the stamp- that is a life skill too! He continues to put the family’s needs ahead of his own.  But the anger, the emotion and the connection to allow friends and family members to give suggestions or have a conversation is hard. Social skills continue to be a struggle in his life.

Finally, there’s my daughter.  She is developmentally about 10 years younger than she is chronologically. She works on life skills and social skills daily. It is a daily routine in our house to do, learn and teach each other. I am a lucky mom to have three sensitive and caring children. My challenge is getting them ready to spread their wings. It will happen in its own time and mine. What won’t wait is the society around them. The world is not a patient place sometimes for our kids. It takes time for many to remember that kids are kids and teens are teens.   

So as you go into that store and see a teen or adult looking for the milk – ask if they need help. They just may need a little direction to allow them to gain a skill.  Remember both my sons and daughter have had many challenges, triumphs and teaching opportunities as they have grown but it may take your kindness to help them “get it”.

Meri Viano is our guest blogger.  She is the parent of two sons and a daughter who continue to inspire her blog posts.

Survivors of similar experiences can often recognize each other.  When you and another parent find something hilarious that others don’t, there’s a strong chance you’ve both lived through something much the same.  You both are struck by the absurdity of the situation, understanding that no one else  would believe it, unless they had also lived through it.

When our sons were younger, a friend and I used to share stories and commiserate.  We would often remark, “I can’t believe he was so stupid!”  One time my son took a note that a classmate had written about him that he didn’t want any one else to see.  After school, he ducked into an alley in the town center, pulled out a lighter and set it on fire.  Of course, a police officer walked by at that moment and he was given a warning.  When we talked later, he told me he HAD to burn it, not rip or toss it and it had to be immediately.  It didn’t occur to him not to set a fire in the town center.  I called my friend and moaned, “I can’t believe he was so stupid.” A few days later she had a story to top mine.  We ended up buying the URL for mychildisstupid.com, although we never ended up using it.  No doubt there would have been some hysterical stories that topped either of ours!

We laugh about our children for a lot of different reasons.  Sometimes, it’s because they are so darned funny. Sometimes it’s because they have such a hard time seeing the humor in life.  Sometimes it’s because we can’t believe it, are gobsmacked by what happened or we can’t think of what else to do.  So we laugh.

Research tells us that laughter is a wonderful thing.  It boosts the immune system, releases endorphins and protects the heart.  But most of us don’t laugh to increase our health.  Raising a child with mental health needs is a roller coaster ride.  There are good days and bad days.  There are times that exhaust us, frighten us, frustrate us, anger us and sadden us.  There are times that gladden us and encourage us as well. There are times when we feel incredibly lonely.

Humor is a way to share the experience.  Humor can bring you closer to one another and confirm the comraderie of people who have been through the worst and lived to laugh about it.  It creates a new language to share your experience that is free of labels, acronyms and pathology.  It can be dark or droll, sarcastic or dry and express the variations of our lived experience.

Years ago, when I ran a support group, the mom of a nine year old boy used to attend regularly.  Her son was alternately despondent and manic and they had not yet found much that helped him.  Sometimes he saw things that weren’t really there.  Through it all, though, she would tell stories of their week in a way that made all of us laugh.  We were empathising with her and rooting for her each step of the way.  One week, she came to the group and told us that the day before her son had run to her.  “A stranger got in the house,” he said.  “How do you know?” she asked him.  He thought a moment and told her, “I was just in your room and there’s a strange man jumping up and down on the bed.”  “Honey,” she replied, “I should be so lucky.”

Both were brought to the emergency room. My son was taken immediately into a room to get his vital signs taken; the young lady was stripped of all her possessions and was told there were cameras watching her. She cried.

Both needed to report on their past history. During the first hour my son’s medical history was looked over and questions were asked and answered by his parents. The young lady and her father sat in a small locked room. They cried.

Both had a diagnosable disorder. During the second hour, my son’s medical history was discussed right away and the nurse wanted to hear about the events that led up to us being there. The 16 year old sat in a small locked room and cried.

Both needed to know that they were going to be safe and okay. During the third hour, my son was administered an IV and asked if he needed anything to make him more comfortable. The young lady sat in a small locked room and cried.

Both needed to be assessed and a course of treatment needed to be administered. During the next several hours my son was taken in and out of the ER to have tests done. It was determined he needed treatment and was being transferred to the Pedi ICU. The teenage girl sat in a small locked room and cried.

Both needed to get healthy so they could go home and get back into the game of life. My son was quietly and respectfully taken for a ride to the Pedi ICU. He was seen by several doctors and nurses and given all the support and treatment he needed. I was invited to help myself to the family kitchen area and make myself something to eat and drink. The nurse came in and made the pull out chair bed for me and gave me a nice pillow and blanket. The young lady was given a glass of water and after 10 hours in a small locked room, her insurance company determined she could get the help she needed. Behind the administrative locked doors came two EMTs and the doctor. They told her to jump right up on the stretcher, right in front of several other youth and family members so they could be take her away. After 12 hours of sitting in a small locked room, she was finally going to get the emergency treatment she needed. She didn’t cry, she ran out of tears. I cried for her.

What a difference a diagnosis makes!

—by Beth P., parent and family partner

For parents of special needs children, this can be a difficult time. Often the previous year is something we would rather forget. When things are going well, it can be scary just to exhale, as the anticipated disappointment can be too much to bear. When your most heartfelt wish is that your child makes a friend, making wishes can be difficult because so much seems out of your control. Setting a goal can seem like a waste of time when everything seems so uncertain. Making resolutions can feel self centered as you think, “Don’t good parents always put their children first?”  Yet, how many times have we heard the analogy about parents on an airplane? In an emergency, we are told, we must secure our own oxygen masks first. The message is that we can’t take care of our children if we don’t take care of ourselves first. Easier said than done!

A friend of mine who is an author writes about spirituality and self exploration. She wrote:

One of my annual tools is to pick a word-of-the-year in early January, and explore it for the next twelve months. By the end of the year I hope to be able to sum up my findings in one short sentence that rings true for my particular essence. Last year I found that Gratefulness produces abundance. The year before I found that modern day Humility is voluntary simplicity. These findings are now part of my DNA, as is anything you sit with for an extended period.  R.M. Allen

She picks a word that scares her a little, and lists the reasons it scares her. I like this idea a lot. It’s a way to spend time working on me without taking time away from other obligations. I can think about my word when stuck in traffic or doing the dishes. Maybe I will post the word next to my bed or in my medicine cabinet, so I don’t forget. 

My wish for all of you is that you know, down to your DNA, that your best is all you can do. That you can let go of some of the guilt that you may be carrying around, and that you are able to exhale from time to time. I wish you and your family a very happy and peaceful new year.

Nancy Collier is our guest blogger.  She is a Family Support Specialist north of Boston where she supports families as well as providing them with information and resources.  On her days off, she plays with her grandchildren and walks the beach near her home.

My awake dogs are wondering if it’s a child or a mouse.

The children are ready for the transition to begin

In hopes of finished schedules and mommy to chime in.

The schools will soon close for a break and a rest

And I will hope for transitions to work out for the best.

It will balance fun, with appointments to drive to

In hopes that I’ll get there without wounds to attend to.

My week will have bumps and meltdowns will arrive

But my phone will be ready to call MCI.

If my supports are all ready with tricks and ideas

I will be safe to survive the teenage years.

I’ll dance and I’ll sing with humor around

In hopes that my daughter is homeward bound.

To make her brothers laugh and bounce back to fun

Cause she’ll show them her funny face then she’ll run.

It will all work out as it does every year

But this one is tricky because of the teenage gear.

As the break happens,  you wonder how to survive

Remember there’s one thing  you can continue to drive –

The supports that you need and friends close and dear

So that you will be able to move through the year.

Merry Christmas to all and to all a good night.

Holidays will happen if you want them alright.

Keep your smile intact so you continue to glow

My children, like yours, will teach us to grow.

Happy Holidays to you and to you a goodnight…

Meri Viano is our guest blogger.  She is the parent of two sons and a daughter who will be home during school break.

“Nancy emailed, “When I was at the end of my rope, PPAL helped a lot and extended my rope so I wasn’t so hopeless. The family support specialist was most helpful at the IEP last year; she goes above and beyond her role in any way she can when someone is alone in the “lion’s den.”

Deb writes: “There are not many places that we can feel welcome but when this happens it’s priceless. I have even gone so far as to recommend this service to others in different areas of Massachusetts because networking works!”

A new group member says, “My daughter and I were invited to attend one of the PPAL meetings held on a Friday night. I had heard that both my daughter and I would feel welcome. As a single parent, I was comforted by the fact that my daughter would meet other challenging children and have FUN with them. I was looking forward to having some time to myself and to meet other parents. I found that I am not the only parent who has moments of real despair, moments that I feel that the walls are caving in, moments when no one understands what it is like to have a child with special needs, moments when I am thought of as a mom who does not set limits or discipline my child, moments of sadness that my child feels different and has no friends, moments that I feel that I have no place to escape. We were met with warmth and smiles from everyone in the room. All the parents described his/her child’s plight with care and love in their voices. Every member of the family is affected by the special needs child. No one escapes. You believe that your child’s problems are insurmountable until you listen to others’ experiences. No one sits in judgment as everyone understands that what is most important is your child, you and your family. By hearing other peoples’ challenges you appreciate that you are not the only one who is suffering and feeling overwhelmed but the most important factor is that YOU ARE NOT ALONE ANYMORE. In the last two weeks, I have gained much insight, information and feel that our group leader is an angel from heaven. Her knowledge and understanding of all the challenges that we as parent face is most comforting and truly appreciated. It is with much gratitude and appreciation that I now know that my daughter and I have found friends that we can both enjoy.

Meryl states, “PPAL has been a great place to learn that there are other people out there besides me to are going through challenging times.”

Yet another parent, Brenda, writes, “I have always found ideas that were useful for my situation and the meetings are informative and confidential. The support group leader ALWAYS gets right back to me when I have questions or concerns.”

Finally, Tara tells us that “The world is a better place because of PPAL!”

Let me say right up front that this is a letter of thanks.  Something remarkable is going on in children’s mental health here in Massachusetts.  We’ve been pretty quiet about it and I’m not sure why.  I think we should be shouting it from the rooftops every chance we get, don’t you? 

As you know, a girl named Rosie D and her family got together with others like them and sued the Commonwealth of Massachusetts a few years ago.  Her family believed that children should receive mental health treatment in their communities whenever possible instead of going to residential programs or hospitals.  The state had a few small programs to fit the bill, but not enough to even start to go around. 

The federal judge wrote in his decision that Massachusetts needed to change how it delivered mental health services to children and youth receiving Masshealth a year before you became governor.  But when those families went to court, they wanted a remedy, not money or damages.  What landed in your lap was the task of creating that remedy and having it meet the needs of all those children, youth and families that were counting on it. 

There are lots of children and youth here that need these services in order to have the kind of life their parents want for them and that they deserve. Epidemiologists tell us that 1 in 5 children experiences a mental health disorder during the course of a year. That comes out to 286,600 children in the Commonwealth.  For most of them, there is a delay before they receive treatment, often a delay of years. 

Since that judge issued his order, the people on your staff have created something amazing and unprecedented.  They designed the Children’s Behavioral Health Initiative and they said they were going to change how things work for children and teens like Rosie D. They made sure the services were in the community.  They created a model where families were part of the team figuring out what care was needed.  They designed a new way to respond to mental health crises (and we all know that children have their crises at inconvenient times) so that the team came to the family instead of the parent and child trekking to the emergency room.  And it’s up and running all across the state.

As with all new initiatives with this kind of scope, there are still things to work out.  Sometimes the services don’t work the way they should.  Sometimes children don’t get what they need right away.  Sometimes we just need to tweak things and sometimes significant advocacy is called for.

My father, a New Englander to the core, used to say that you can’t learn to ice skate without falling down.  While no one wants to see mistakes, we can learn from them.  Parents want their experiences, good or bad, to make it better for the next family behind them.  Parents want to and will be the Amazon.com reviewers and consumer reporters of the services that their children receive.  I wish there were a way to make sure their experiences were collected and used to improve the design, the practice and the kinds of outcomes we focus on.  Their input is incredibly valuable.  Can we think about that?

You probably know all this, but what you don’t know is how the rest of the country — or at least those who pay attention to the children’s mental health world — finds this both jaw dropping and exciting.  It’s not just what’s been done here, its the scope of it. When I go to an event with people from other states, they come over and want to hear the details.  They want to know how families see things, how this new initiative has changed our system of care for children in Massachusetts and they are hungry for both data and advice.

People in other state governments want to hear about our successes, our roadblocks and how we continue to improve things.  Researchers want to hear about our data and outcomes.  Policy makers are interested in how this has impacted other children’s services, funded both by the state and by private insurers.  Families want to know how they can help build something similar in their own states. 

We all need good news in these tough economic times.  You’ve done something remarkable here despite those tough times.  Let’s get the word out.  In the meantime, thumbs up.