Tag Archives: parent support

Parent support is a basic need

October 17th, 2017

When my son was 9 and his brother was 6, we moved back to Massachusetts.  They were both born and raised in southern California (up to then) and we liked it there. The weather was great and we had friends (though the number had dwindled because of my son’s mental health problems). But I was going through a contentious divorce, getting care for my son was a full time job and frankly, the most important thing in the world right then was support for me.  My own family was in Massachusetts and they offered support with open arms.

I was lucky, having a supportive family.  At times they were bewildered by my son’s behaviors and sometimes disagreed with how I picked what to ignore and what to stand firm about.  But they believed in me, believed I was a good parent and that a family’s job is to accept you. It made a world of difference.

Support is a small word that means a constellation of things.  It can look like education and information.  It can be advocacy and walking shoulder to shoulder.  It can be acceptance and non-judgement.  It can come from groups or be given one on one.  It can come from family and friends, formal parent peer support and sometimes, professionals with skills and compassion.

In children’s mental health, we talk about the needs and strengths of families.  Many families have basic needs as well. When we list basic needs, we usually talk about things that can be measured or delivered such as housing, food, utilities, transportation and clothing. Sometimes personal safety makes the list and sometimes legal help does as well.  Most of what is listed under basic needs is about survival or accessing things necessary to survival.

I think parent support, for those of us raising a child with behavioral health issues, is a basic need too.

I have talked to lots of parents who feel as if they cannot take another step.  They find it hard to get out bed, or feel profound sadness, or feel like they are one step away from emotional collapse.  I’ve known lots of parents who need therapy or treatment themselves and say they would have been okay without this emotionally exhausting experience.  I have even visited one or two parents in an inpatient unit.  I’ve met parents who go before the court and say,”Just take him, I can’t do it anymore.”  Please don’t say to them, ‘God doesn’t give you more than you can handle.”  It sure doesn’t seem that way to them.

Parent support doesn’t fix things when you get to that point.  But it sure helps. Often, it helps a lot.

When things are dire, or seem like it, parent support from someone who has been there is pretty wonderful.  Even though you intellectually know you aren’t the first to be in this position, you still feel pretty alone.  You’re not sure there is a route to a better situation and you have no idea how to break it down into small, doable steps.  You doubt yourself. Just like someone without shelter, you are out in the cold. Someone who has been through it has credibility, skills and compassion, all in one package.

Even though formal parent support can be superb, informal parent support can come from many places large and small.  It can be a reassuring story from someone who is a friend of a friend.  It can be a generous gesture.  Before I moved back to Massachusetts, I had a smaller move at a time when my son was having epic meltdowns 3 or more times a day.  Some people from my church took control of the details of my move and even ordered in pizza.  One of them said, “Your son needs you more than he needs you to pack or lift boxes.  So we will do that.”  I felt supported, cared for and able to keep dealing with my impossible day-to-day life.

When parents have support, their kids do better.  Mine sure did.  Pick up a book on self-care and you’ll read something along the lines of “put on your oxygen mask first.”  There should be an equal emphasis on “Let someone get you coffee” or “Let someone show you the ropes” or “Allow someone to tell you how lucky your child is to have you.”  The last one is the one I needed to hear most, because I rarely said it to myself.  It’s one of the things I make sure to say to other parents regularly.  They need to hear it just as much as I did.

When a parent raising a child with behavioral health issues doesn’t get her basic need for support met, she can’t parent the way she wants to.  If you are emotionally depleted, you can’t give any child what he needs, let alone your own child who needs megatons more.  You can’t do that do-si-do where you step in to nurture and step out again.  You’re not replenished and you simply just can’t. “You can’t give what you don’t have,” the adage goes.

Parent support is not a luxury or optional, it’s a basic need.  Systems need to build it in and parents should ask for it often.  We wouldn’t be shy about other basic needs, would we?

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7 Steps before you hire a special ed advocate

August 23rd, 2015

Mother and son, K. Sawyer Photography, flickr, creative commonsIt’s August and students are beginning to go back to school.  Many parents are thinking and worrying  about the educational needs of their child. Are they receiving the services they need in their classroom? What are their rights if they think they need more services? If they have tried to get special education services before and perhaps they were stalled with “your child is fine, no need for services.”!  Some might  think the school staff is correct; after all they are the experts. Others will attempt to get services either on their own or by hiring an educational advocate or attorney.

I know the system all too well. I knew it before I adopted my son; I was a child advocate in the State Office for Children in the 1980s. I have continued advocating for hundreds of students over my career. Initially, I thought it would be a breeze– after all I knew what I was doing. Then we had the first meeting about my own son, the one with all the staff around the table. There were his evaluations and test results. Yes,  I knew this was a concern but wait, what did the specialist just say?  I felt alone and stuck on what she just said. Unfortunately, no one in the room realized I was no longer actively participating.

From that meeting on I never went to another meeting by myself. I had a friend who was a trained advocate who became Josh’s. She knew when to answer for me and when I was able to state my concerns myself. As I reflect over the last 18 years, I know that as a parent I was unable to keep my emotions at bay.

Although Josh is no longer in school, I continue to advocate for students. Over the last year I have received several calls from families referred to me because they were stuck. Many hadn’t done their initial research before they hired someone, often costing them thousands of dollars for minimal services. This trend is starting to widen and families are going broke trying to access services for their child. That concerns me deeply.

Unfortunately, in Massachusetts, advocates are not licensed. There are no regulations or mandated trainings to become an educational advocate. Some advocates are parents who have learned the process through advocating for their own child.  Others have been trained by the Federation for Children with Special Needs (FCSN) or another source, still others have held jobs in Special Education. There are many good advocates out there but there are others who won’t match your needs.

Here are 7 steps you can take to make selecting and working with a special education advocate more effective for you:

1.  If your child receives services already really read the Parent Right Document you have received.  It’s a wealth of knowledge about your rights. If you are new to special education, google MA BSEA and locate “information for families,” you will locate the guide there.

2.  Always take someone to the meeting with you as a note taker or so that they can help you ask questions. Sometimes all you need is a friend who knows you and can stop the meeting so you can refocus. If it’s too overwhelming, you have the right to say “we need to stop the meeting today and reschedule after I absorb what you just told me.”

3.  If you decide to hire an educational advocate, please understand there are some limited resources that may be able to connect you to a free or low cost special education advocate. The FCSN at times has a few. Unfortunately, advocacy is not paid for through your insurance so it will be an out of pocket expense. That said, some advocates have a sliding fee scale and will work with you on a payment plan.

4.  Before you pay a retainer to an advocate do your homework. Ask your friends, colleagues, professionals working with your child or contact PPAL and ask for a referral of someone who does a good job and has a track record of getting needed services. Your child may have a mental illness or has autism so you want someone who understands the social emotional demands to ensure the IEP is written to have goals to address it.

5.  Many experienced advocates provide an initial phone consult at no charge. Use this time to interview the advocate to ensure that this is who you want to work with, ask about your rights as a family. How long they have been providing services, what their specialty is when providing educational advocacy. They may ask for a small retainer to review the file.

6.  Prior to signing a contract, ask what the fee will be, the retainer and approximately how much it will cost to get services for your child.

7.  Finally, never place your child in an out of state program at your own cost unless you have at least gone to Mediation and had a consult with a Special Education Attorney who can advise you on the merits of your case. If not you could spend your life savings on a short term fix.

 Lynn A. Powers, MSW is a special education advocate who provides advocacy for students 3-22. Lynn specializes in working with students with social emotional needs to make effective progress. She hopes her hard won knowledge over 30 years can help families who have children with special needs.

 

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