What back-to-school worries are in your child’s backpack?

Education is not preparation for life; education is life itself. 
– John Dewey 

Kids running towards busIt isn’t only your child who may have back to school jitters/nerves. The start of any new school year can bring both excitement and worry for any parent, particularly for parents of children with special needs. Will the new teacher understand my child’s special needs and be a “good fit”? Will new classmates offer friendship or teasing and bullying?  If changes are hard for your child with special needs, as is often the case, what behaviors or emotions may spill out?

Back-to-school jitters are especially potent if your child with special needs is headed to a new school. New physical space, new teacher and staff, new route to school, new IEP team.

What might be behind some of our parent jitters?  If as children we struggled in school or were teased ourselves, those memories can be rekindled as our children head through the school door. If you loved school and your child doesn’t, that also can bring disappointment. As parents of children with special needs, we can become very protective and have anticipatory worry.

Unfortunately, worry can be contagious. Our children sense it if we feel confident and positive or worried and negative. If you find yourself with too many jitters or worries:

  • Find a trusted person with whom you can let those worries out so they don’t spill over on your child.
  • Try to ensure you and your child are rested for the big day.
  • Exercise and meditation can relieve worry and stress.
  • Use language that communicates positive ways to approach new situations.
  • Focus on positive features about the new school year.
  • Write a one-page summary about your child for their new teacher. Include your child’s strengths, interests and challenges and some techniques or strategies that address them.
  • Take a “test run” and visit the school with your child before the first day to familiarize both of you with the new environment.
  • Reach out and identify people in the new school year who feel warm, positive and accepting about your child and you. Besides the educators, this might be the school secretary, custodians, bus driver or cafeteria workers.

For more tips on reducing transition anxiety:

What’s In a Diagnosis?

ImageIn  preschool, my daughter was the only one who couldn’t sit in circle time without rolling all over the floor. Riding tricycles with her classmates in a big indoor playroom, she was the only one who said she could hear chairs moving across the floor in the room above.

But it wasn’t until three years later that her first-grade teacher gently pulled me aside, looked me right in the eye, and said she was concerned. She advised me to get an assessment.

It was time for me to let in the message that my daughter needed to be diagnosed and her needs better understood. It was time to move beyond the words and phrases used to describe her (“fidgety,” “sensitive,” “unfocused”) and get something formal.

Why did that matter? Does a label or diagnosis matter? As parents helping many other parents over the years at Matrix, we have discovered the following about what’s in a diagnosis:

There can be positives…

  • A feeling of relief
  • Connection to doctors and professionals who specialize in that diagnosis
  • Ability to focus services and interventions
  • Family and friends can become more understanding
  • Insurance may pay for services
  • Clarity for an older child who may wonder, “What is wrong with me?”
  • Chance to find other parents dealing with the same diagnosis
  • Connections to organizations that specialize in information, help, and support

…and negatives:

  • Many emotions: worry, fear, grief, embarrassment, denial
  • Your child now has a “pre-existing condition”
  • Realizing your assumptions about the future — or your child’s potential — may be incorrect
  • Isolation from family and friends
  • Finding out about stigmas attached to the diagnosis
  • Your child may be pigeonholed into a program by a label/diagnosis without consideration of needs

When a diagnosis comes early in a child’s life, either at birth or shortly thereafter, it can bring overload at a tender time. Alyssa DiFilippo, our Parent Advisor – Early Years, has written a moving essay about learning and accepting a diagnosis in the most recent Early Edition, our publication for parents of children birth through 3.

Whatever your feelings about seeking or receiving a diagnosis for your child, remember that Matrix is here for you, providing referrals, advice, or emotional support via the Helpline, 800.578.2592. The Matrix website includes information packets about a variety of diagnoses, including AD/HD, Autism Spectrum Disorder, and speech and language disorders.

30th Anniversary: I am Matrix, and So Are You

Matrix 30 Years (1983 - 2013)In the lifespan of nonprofits, 30 years is no small potatoes. It means that many people have worked hard to keep Matrix moving forward: the founding mothers in 1983, the first funders (Gannett Foundation), and the first families that found support and information in Marin County…who then told their friends to come to us.

In those 30 years, we went from supporting families in Marin County to expanding services to families in the North Bay to becoming known at the regional and state level. Eventually, we joined the national network of more than 105 federally funded parent centers. Our knowledge base grew to the point that we were designated by the U.S. Department of Education to provide technical assistance to other parent centers in the western states and Pacific island regions.

Matrix FamilyAll of this work — all of the families we have seen, all of the resources, information and training materials we have shared, and all of the parent-professional partnerships we have worked on — was not accomplished alone. It was a team effort by dedicated board and staff, volunteers, the disability community, families, professionals, funders, and community members. These are the folks who believed in our mission of empowering families. They knew that informed, confident families make important decisions that will benefit their children with special needs.

Each of those partners can make the claim “I am Matrix.” The faces of each are different; the actions each took were different: from the family seeking support to the funder who invested in us to the staff and volunteers who connected families with each other and provided critical information to the community, which then became more inclusive.

Our theme for our 30th anniversary is “I am Matrix.” You’ll see and hear vignettes throughout the year from folks who explain just why they “are Matrix.”

In the Spring 2013 issue of the Networker, we look back at our beginnings to where we are today, and list ways that you can help us celebrate 30 years of partnering and service. This year will be action-packed with events and opportunities marking this important occasion. We hope that you will join us wherever and whenever you can, because…you are Matrix, too!

Nora's Signature

Nora Thompson, Executive Director

The financial side of having a child with special needs

financial sideServices [for those with special needs] are seldom available to anyone who does not have the wherewithal to battle agencies. Doing so often requires education, time, and money—which is a painful irony given that these services are intended to benefit people who may be short on all three.
—Andrew Solomon, Far from the Tree

Having a child with special needs typically comes with increased expenses. Deciding to spend money on a service can mean not spending money on something else for your family. Depending on each of our circumstances, there are various decisions and options. Sometimes it seems as though there are not options, or the options seem too complex to understand.

Health Insurance: New — and still being understood — is how to navigate the requirement in California for insurance policies to offer coverage for ABA (behavior services) for children on the autism spectrum. Sites that help explain this law include:

For other health-related services, insurance policies vary in what they cover and how much their co-pays and deductibles are. Sometimes the diagnostic and service codes put on a bill by a provider are key to whether or not the service will be reimbursed. Often it’s not clear whether a service is a healthcare expense or not; for example, does a “psycho-educational assessment” fall under the domain of health insurance? What if it is called a “neuro-psych assessment” instead?

Regional Center: If your child is a Regional Center client, services can be purchased by the Regional Center if they’re needed because of your child’s disability, documented in your child’s Individual Program Plan, and if there is no other agency (school, medical insurance, etc.) responsible for providing those services. That means Regional Centers are the “payor of last resort.”

In the last few years, there have been a lot of changes to what Regional Centers will and will not pay for. However, it is important to know that decisions must still be determined based on individual need, and “cost-effective” does not necessarily mean the cheapest service available.

As of July 1, 2012, private health insurance must cover the cost of behavior services for people with autism or other pervasive developmental disorders. This law does not apply to Medi-Cal or to Healthy Families or to what are called “self-insured health plans.” There is disagreement over whether or not Regional Centers must reimburse families for their co-pays and deductibles when families pay for behavior services through health insurance. Contact your insurance company to find out about your particular situation. Be persistent in asking Regional Center to cover those added costs! For more information,  see this handout from Disability Rights California.

If you do not have IHSS Protective Supervision hours, Regional Center may pay for respite and may pay a portion of your daycare costs. If your child is older than 3, you may get help with paying for diapers. A workshop on Regional Centers services will be presented by Matrix, Area Board 4 on Developmental Disabilities, and the Office of Clients Rights Advocacy on Saturday, April 27, in Fairfield. Download a flyer here.

Tax deductions: Some expenses incurred in caring for a child with special needs can be deducted on your income tax return. This is a complex area to navigate. Tax laws change from year to year and include many variables, definitions, and requirements (you may need a letter from a physician saying that the expense was medically necessary, for example; also, unreimbursed expenses need to be a certain percentage of your income or more). Consulting with a tax expert or getting current tax information can help.

Medi-Cal and Healthy Families Program: Medi-Cal provides health coverage for qualifying low-income Californians. There are many different Medi-Cal programs, so if you are not eligible under one program, you or your child may be eligible under another Medi-Cal program. Healthy Families Program (HFP) is a low-cost health insurance program for children who do not have other insurance and do not qualify for free Medi-Cal. As of January 1, 2013, there will be no new enrollments in Healthy Families. However, the Medi-Cal program will continue to provide health, dental, and vision benefits to uninsured children, and Medi-Cal coverage will now go up to the HFP income level and provide coverage to all children that were previously HFP eligible. See the Healthy Families website for details.

SSI: Some children with disabilities may qualify for Supplemental Security Income (SSI). Parent income is used when determining if a child qualifies for SSI. Sometimes, through what is called institutional deeming, a child may be eligible for SSI even if a parent’s income is above the eligibility limits (see the handout from Disability Rights California). Your child with a disability may also qualify for Social Security through a parent’s work record if the parent retires, becomes disabled, or dies. Someone can change from SSI to SSDI, which may increase the monthly benefit amount, and not lose their Medi-Cal [link to SSI.SSDI pdf COMING]. For more information on SSI for your child, see our Matrix Help! sheet about SSI.

Even with various avenues for reimbursement, out-of-pocket expenses can pile up and cause stress in the family. Our online chat group is a forum where parents can offer tips, support, and suggestions to other parents. Most Matrix workshops and trainings are free; see the calendar for a list of what’s coming up.

Hard Work

Couple on a path

“How do we make ‘couples’ time when the practical daily needs of that child (and any siblings) consume so much of our attention?”

“You have to work hard to make a marriage work.” “Bringing children into a relationship can be hard.” “Balancing the all the needs of a family is hard work.” “Having a child with special needs is hard on relationships.” We have all heard these statements over the years and the horrible, though maybe exaggerated, statistics that highlight the failures. Generally those statements, when heard separately, are depressing enough. But sometimes, for some of us, they are heard en masse, a scary preamble that can make the most stable person want to cower in the corner in the fetal position. We are those parents who have (or had) partners/spouses and family that includes a child with significant needs. Is cowering in that corner an option? Not really! We have the daily business of parenting that child and being a family on our overcrowded, fragile plates.

How do we take this tough situation we been dealt and make all the moving pieces work? How can we build and maintain a healthy adult relationship with our partner when the odds seem stacked against us? How do we make “couples” time when the practical daily needs of that child (and any siblings) consume so much of our attention? I vote that we get 8 more hours added to each day to do everything … so far that hasn’t happened.

I write this piece as someone who has been married a long, long time. I do not have words of wisdom or magic methods to share that will work for you. We are not the “perfect” couple who beat those odds. We just are who we are. We are not the best communicators, and each of us has a few teensy irritating qualities. We both think we give into the other more than they give into us. But we are still together.

It has been hard — at times harder than either of us could imagine. Some of those hard times were linked to our daughter and her disabilities, some involved our other children, some just came from having different expectations of each other. There were also joyous and wonderful times. Sometimes we are a united force who face challenges as one, and sometimes we are deeply divided about what the best action is. We have learned to pick our battles, the ones on behalf of our daughter and the ones we have with each other.  Though as an “experienced” married couple, the energy expanded to really battle each other seems better used elsewhere. So the battles between us are less frequent

We have a child with speical needs:  Soluations & SecretsSince I have no words of wisdom, I am pleased to announce that at Matrix’s 6th Annual Author Luncheon Benefit on April 15 will feature Fran Pollock Prezant, M.Ed., and Laura E. Marshak, Ph.D., authors of Married with Special-Needs Children: A Couples’ Guide to Keeping Connected, and founders of Disability & Family Balance. They have great information, strategies, and some secrets to share that may help you beat the odds.

Brown Paper Tickets  I hope you can join us! Click here for more information or click here to purchase tickets.