“I went through two solid weeks of grieving, when I would sit on our porch and cry every single night,” says a west-Metro resident and mother of two boys, one of whom has been diagnosed as having Asperger’s syndrome, a developmental disorder that affects the ability to socialize and communicate effectively. Mary (not her real name; she asked that it be changed for this article to protect her son’s privacy) says she still vividly remembers her reaction, 10 years ago, when her family began to face the reality of her son’s diagnosis. “I think I really needed to give myself that time to grieve,” she says. “But I have a very strong belief system, so my faith really helped get me through it.” Now, Mary says, she gets phone calls from friends and acquaintances, seeking her advice when a child they love receives a similar diagnosis. “I think it provides comfort and grounding to connect with someone who has walked the same path,” she says.

Receiving a diagnosis like Mary’s son can trigger a huge range of overlapping, conflicting, and often very-difficult emotions—relief that you finally have a name for what’s been going on, release of fears that you were just making it all up, and pure, sheer terror about what’s going to happen next. Parents who have had similar experiences, as well as mental health experts, say that there are many steps you can take to help cope in this challenging time.

Not just a phase

Jennifer Britton, a licensed independent clinical social worker (LICSW), is the Intensive In-Home supervisor at Washburn Center for Children, a Minneapolis-based facility that serves kids with social, emotional, and behavioral problems. She describes her job as “helping to stabilize kids, provide healing for families, and offering holistic support in the home.

“We see children of all ages, but we see quite a few who have just reached the age of 10 or so,” she reports, adding that most families have usually waited about a year before arriving at her facility for a diagnosis. “They keep telling themselves that it’s just a phase, or hoping that their child will ‘grow out of it,’” she reports. “The first thing we tell families is ‘we’re glad you’re here.’”

How many are affected?

A National Institutes of Health study reports that half of all lifetime cases of mental disorders begin by age 14. There are often long delays, sometimes decades, between the first appearance of symptoms and the time that treatment is received, which can make any disorder more difficult to manage.

The issue of children’s mental health has been coming under increasing focus, in part because it is being identified and treated at earlier ages. The U.S. Department of Health and Human Services reports that four million children and adolescents in this country suffer from a serious mental disorder that causes significant functional impairments at home, at school, and with peers. Autism affects one in 88 children and one in 54 boys. But even with an increased focus on diagnosis and treatment, the U.S. Public Health Service reports that only 20 percent of children who need help are identified and treated each year.

First things first: the IEP

If you sense something is awry with your child’s development, neurobiology, or mental health, trust your gut and seek a diagnosis as soon as you are able. The diagnosis will be an important part of a complete educational evaluation, which is necessary to obtain an individualized education program (IEP) through the public schools. The school team reviews all evaluation results, including the medical diagnosis, to develop an IEP that defines the child’s disability, outlines the skills that need to be learned, sets objectives for what will be accomplished during the school year, and offers specifics about the services the school will provide. 

Start with a notebook

It doesn’t seem as if something as simple as a notebook could be helpful in those daunting days after your child has just received a diagnosis, but Britton says it could help you gain control of a world that might seem to be making very little sense at the moment.

Get a small notebook and keep it nearby (and a tie a working pen to it if you have to!). “Write down every place you called and when, and the name of the person you talked to. Write down what they told you, and even take a moment to jot down some personal reflections on how it all made you feel,” she says. Later, when you have big decisions to make on things like schools or treatments, those notes can be very helpful. Patterns will start to emerge. Words will jump out at you and begin to make sense in a way they never did before. With all the information gathered in one place, you will start to feel some measure of control in a situation that often feels like it’s spinning out of control all of the time.

You can use all the information you gather to conduct periodic “check ins” with the places you called in the early days. “Never give up hope. There can be grant funding changes, or program guideline changes, so if you called somewhere a while ago, and they said ‘no,’ things may be different now. Call back and check; it never hurts to try,” Britton says.

Removing the stigma

According to Stephanie Combey, MSW, LICSW, senior director of Children’s Mental Health at St. David’s Center for Child & Family Development, there is still a stigma associated with many developmental, neurobiological, or mental health issues. The good news is that committed, involved parents can help to begin the reversal of those attitudes. She suggests that a good starting point for parents after a diagnosis is to connect with a trusted professional, whether a physician, agency staff, or school professional. “They can help you navigate and work with other professionals.

“Parents should recognize that they need to be an integral part of whatever services their child receives. Our perspective is that we are partners with parents, so if someone is saying something you don’t understand, ask, ‘Can you explain that to me, please?’ You should always know what is happening.”

Combey says, “There are systems out there to help kids and parents. What’s hard is that we have a way to go as a culture in helping people understand all aspects of mental health, especially with children. We need to help parents and so they can feel supported and not so anonymous.”

Asking for help

Mary, the mother of that teen with Asperger’s syndrome quoted at the beginning of the story, acknowledges that the situation can seem even more challenging when treatment centers inform parents of long waiting times for their children to be seen. “Always put your name on the waiting list,” Mary advises. “Things change, people drop off, and it’s been our family’s experience the wait is usually shorter than we anticipated.”

Britton says she talks to many families who struggle to make sense of what do next, how to survive financially and logistically, and where find the best treatment—or multiple treatments—for their child. The amount of time and energy it takes to cope with the system, added to the stress of the child’s disorder, can create a life situation that often seems impossible, but Britton says, “The system can be very tricky, but my advice to parents is ‘Don’t give up.’” Sometimes help can come from unexpected places. “Most health insurance companies have care advocates who specialize in certain areas, and most parents don’t even know they exist. You can start by calling your health insurance provider to find what services are covered and what restrictions are in place,” Britton says.

And, while acknowledging that the challenges can sometimes seem insurmountable, she says, “One of the best gifts you can give your child is to actively model how to advocate for themselves. You’re showing them they can trust other people, there are sources of assistance, and that they can ask for help and get it.”

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Help is available

There are many national, city, and neighborhood-based programs to assist children and families. Here are several that were suggested by the parents and therapists interviewed for this story:

Starting point

Call “211”for free and confidential information and referrals about food, housing, employment, health care, counseling and more, operated by parent agency Greater Twin Cities United Way.

211unitedway.org

Programs and treatment

Alexander Center,part of the Park Nicollet system, says it’s “the largest clinic in Minnesota serving the developmental and behavioral needs of children and their families,” including those with attention disorders, autism, learning difficulties, or communication disorders. tinyurl.com/lo7brty

Amherst H. Wilder Foundation serves children and their families through comprehensive approaches for early childhood education, mental health, housing and school success. wilder.org

Brain Balance is anon-medical program targeted to children with neurobehavioral and learning difficulties.

brainbalancecenters.com

Fraser provides early childhood services, autism evaluations and services, mental health services, neuropsychology, and rehabilitation.

fraser.org

Help Me Grow connects children from birth to age five who have developmental delays and disabilities, and their families, to free early intervention services.

helpmegrowmn.org

Pediatric Autism and Communication Therapy Institute (PACT) utilizes social curriculum and specialized services for children with autism spectrum disorders, social anxiety, language delays, and other developmental disabilities.

pactinstitute.com

St. David’s Center for Child & Family Development provides early childhood education, pediatric therapies, mental health services, autism services, life-phase services, early intervention, and support.

stdavidscenter.org

Washburn Center for Children focuses on helping children with social, emotional, and behavioral problems.

washburn.org

West Metro Learning Connections teaches social skills to children and teens with autism spectrum disorders.

wmlc.biz

 

Societies and advocacy

Autism Society of Minnesota (AuSM)educates families, professionals, and the public about autism, advocates for rights and appropriate services, supports families with referrals, and has the goal to “enhance the lives of those affected by autism from birth through retirement.”

ausm.org

National Alliance on Mental Illness (NAMI) is the nation’s largest grassroots mental health organization, dedicated to building better lives for the millions of Americans affected by mental illness. NAMI advocates for access to services and treatment, supports research, raises awareness and builds community. 

nami.org

Parent Advocacy Coalition for Educational Rights (PACER)is a nationally known champion for childrenand young adults with disabilities and their families, especially in the area of advocating for free and appropriate public education for all children. Jenny Britton, the Intensive In-Home supervisor interviewed for this article, says, “If you’re running into a roadblock in school to get appropriate services for your child, contact PACER first.”

pacer.org

 

Scholarships

Metro Friendship Foundation (MFF) provides scholarships for individuals with Autism Spectrum Disorder‎ (ASD).

metrofriendshipfoundation.org

 

Time for fun

Pump It Up Special Needs Sensory Nights provide a safe, fun, sensory-friendly playtime exclusively for kids with special needs and their families.

tinyurl.com/lwv5b7d

Sensory Friendly Films are free every Saturday at 10:00 a.m., Theatres at Mall of America, with lower sound, bright lighting, extra staff, and the encouragement to dance, sing, and move around.

theatresmoa.com/promotions-packages

Theater Classes through Stages’Creative Accepting Sensory-Friendly Theatre (CAST), a theater education program with a safe, welcoming and comfortable environment for children on the autism spectrum.

stagestheatre.org

 

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When to refer

Early intervention is the best way to ensure a child’s future success and development. Here are some indicators to watch for as your child develops:

 

By four months

Not turning toward sounds

Not showing interest in people’s faces

 

By six months

No big smiles or no expressions of joy

No cooing when happy or crying when unhappy

 

By nine months

No exchanging back & forth smiles and sounds with family members

No back & forth gestures such as giving, taking, and reaching

 

By 12 months

Not responding when name is called

No babbling such as “ma” “ba” “da” “ga”

 

By 15 months

No pointing gestures to draw attention to something of interest

Not using or understanding at least three words such as “mama” “dada” “bye-bye”

 

By 18 months

No purposeful pretend play such as feeding a doll or stuffed animal

Not indicating familiarity with family names or body parts

 

By 24 months

No two-word meaningful phrases (without imitating)

Not showing enjoyment in playing with children of the same age

 

By 36 months

Not answering simple questions such as “what” “when” “who”

Not showing enjoyment in playing with the children of the same age

 

Refer for immediate evaluation:

• No big smiles or other warm, joyful expressions by six months or thereafter

• No back and forth sharing of sounds, smiles or other facial expressions by nine months or thereafter

• No babbling by 12 months

• No words by 16 months

• No two-word meaningful phrases (without imitating or repeating) by 24 months

• Any loss of speech or babbling or social skills at any age

 

—courtesy of helpmegrowmn.org and adapted from First Signs Autism Screening Information

 

[Sidebar]

Quick tips

• Trust yourself: you know your child best, and if you think something is wrong, it’s time to see a professional

• Get an early diagnosis: the earlier, the better

• Get an IEP: work as a team with the school to build a plan

• Talk to others: reach out to other parents in the same situation and start building a network

• Educate your child’s circle: share relevant information with the people your child’s life, including extended family, teachers, and care providers