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You are the most important person
in your child's life.
You know your child best. You understand your child's needs, and what is helpful and what is not. You have the most information about – and are responsible for – your child's growth, development, and you, of course, want them to be happy. In a world of professional titles, consider yourself a FAMILY INFORMATION SPECIALIST!
As a specialist, you probably have some questions about your child's development, navigating different systems (schools, mental health and even social services or juvenile justice.) This section attempts to answer the most frequently asked questions posed by caregivers. If you don't find your question or answer, contact Better Days Ahead, Family Support Network which is a service of the Mental Health Association of Rochester.
Frequently Asked Questions (FAQs)
What is early intervention?
What information is "out there" for preschool age children?
Where else online is a good place to start to find information on early intervention?
Is there a toll free hotline?
My child seems to be getting worse instead of better, now what?
Everyone is telling me what to do and nobody agrees, now what do I do? Should I change to another provider? Is there something beyond therapy?
What is a serious emotional disturbance? Does my child have one?
Do I really just need to take a parenting class? Or is there something else going on?
Are there other kinds of providers for children like mine and if so, what are they and how do I access them?
My child is being bullied. What should I do? Will it help or will it make things worse if I talk to the school?
My child talks about suicide, death and dying all the time. This scares me. What should I do?
My child has started running away. I don’t know what to do and I am really frightened. What are my options?
We really thought our child would outgrow these problems, but now I’m not so sure. What will their life be like and will we always have to care for them?
My child struggles in school and isn’t making much progress in learning. Are their special education services for children like ours? How do you access those services? What can they do?
What is Early Intervention?
The early years of a child's life are very important. During the infant and toddler years, children grow quickly and have so much to learn. Some children and families face special challenges and need extra help. Early help does make a difference! (Source: http://www.health.state.ny.us/publications/0532/)
The Early Intervention Program is a statewide program in New York that provides many different types of early intervention services to infants and toddlers with disabilities and their families. In New York State, the Department of Health (NYSDH) is the lead state agency responsible for the Early Intervention Program.
If you think the Early Intervention Program can help you and your child, there are six steps to follow. Click on any of the steps listed below and it will take you to the corresponding page on the NYSDH Early Intervention website.
Early Intervention Steps
Step 2: Meeting Your Initial Service Coordinator
Step 3: Having Your Child Evaluated
Step 4: Making a Plan for Services - Your IFSP
Step 5: Putting Your IFSP Into Action
What information is "out there" for preschool age children?
If you think your son/daughter might have emotional and behavioral challenge(s) it is good that you are looking for more information and resources early. Early intervention is the key to current and future success for you and child. There is a lot of information to share and we've dedicated an entire page to answer a few questions related to preschoolers.
Where else online is a good place to start to find information on early intervention?
The New York State Department of Health (NYSDH) website is a great place to start to find information on early intervention. This site will give you a lot of information about what you can expect as far as normal development during different stages in your child’s life.
On the NYSDH website, you will find A Parent's Guide to the Early Intervention Program which starts by providing information about some of the basic facts about the Early Intervention Program. Then, A Parent's Guide explains each step to follow – and gives you tips on how to make early intervention work best for your child and family.
Is there a toll free hotline?
For more information about early intervention contact:
"Growing Up Healthy" 24-Hour Hotline 1-800-522-5006
Remember, it never hurts to ask questions because you are more likely to learn something new or perhaps confirm your own inclinations - and that can feel good too.
If you contact the toll free hotline be prepared for them to ask you a few questions before referring you to a local hotline number for further information.
One question they are likely to ask is about whether you have private insurance or Medicaid because there may be a copay associated with services.
My child seems to be getting worse instead of better, now what?
Every human being has good days and bad days. Anyone with a mental health challenge will experience the same kind of ups and downs. It is not necessarily of concern if they experience a few difficult days. What is more important is whether there are trends that last more than a few days and don’t seem to be readily resolved. As always be sure that you talk to your providers (pediatrician, counselor/therapist or anyone working with your child both in school and other activities) about these concerns.
Everyone is telling me what to do and nobody agrees, now what do I do? Should I change to another provider? Is there something beyond therapy?
Deciding how to treat a mental health challenge is not always as easy as deciding how to treat a common medical illness. If we have strep throat it is pretty clear that an antibiotic is called for. However, when it comes to mental health issues there is much more professional judgment when making treatment recommendations.
Regardless of the decision it is probably not going to be a quick fix and firing your provider because the treatment isn't "working" may not be the first thing you should do. Unless you feel your provider is really not a good match for you or they've done something completely unethical then continue to work with your provider AND be sure to share your concerns and be honest about what is and isn't working with your child's treatment and how it's affecting your family.
When you talk to your provider suggest re-assessing your child's treatment plan. Make sure goals are clearly articulated, reasonable and measureable. Also remember to keep your expectations realistic... often we hope for big and immediate gains so when things don't go well we're even more disappointed.
Sometimes the match between child/family and providers is just not right and you don't mesh - for any number of reasons. But before you switch consider seeking a second opinion.
If your child isn't on medication then an evaluation for medication MAY help BUT keep in mind that for some things medication may be a big help, but for other things medication may not be helpful at all. It may be necessary to try the most common treatment and just wait to see if it works for your child.
We know, we've been there and it can be so frustrating. Remember that it can also be frustrating for your provider as well as your child. Deciding how long to try a treatment before switching to something else is a decision that should be discussed with your child’s provider.
What is a serious emotional disturbance? Does my child have one?
A serious emotional disturbance (SED) is not a particular diagnosis or illness. Rather, it is a designation based on a set of criteria that is often used to determine whether an individual qualifies for more intensive services.
To be designated SED, a youth has to be diagnosed with at least one Axis I mental health disorder according to the criteria in the Diagnostic Symptom Manual IV-TR (DSM IV-TR). In addition, the youth must be assessed to have at least moderate functional impairment in two of the following life areas: self care, family life, social relationships, or self-direction and/or learning disability.
According to recent statistics, one out of ten children have a serious emotional or behavioral disorder that impairs their functioning in daily lives. The best way to determine if you child meets criteria for a serious emotional disturbance is through a comprehensive evaluation by a qualified mental health professional.
Do I really just need to take a parenting class? Or is there something else going on?
If it is decided that your child has mental health challenge it does not mean that you are a bad parent or that you just need to take a parenting class. On the other hand, it is sometimes possible to learn difference techniques (including parenting techniques) that might improve your relationship with your child.
When a child has significant emotional and behavioral challenges, both the child and the family are under increased stress and can benefit from learning coping techniques to help maintain a good, positive relationship. When highly stressed it is far too easy to say things out of frustration that we might never say otherwise. So…although you may not need a parenting class you may decide that brushing up on parenting and communication skills can help you and your child stay positive and connected. More than anything else, your child needs to know that they are loved even though their behavior may be difficult at times.
Are there other kinds of providers for children like mine and if so, what are they and how do I access them?
For the average child with mental health challenges seeing a therapist on a regular basis and perhaps taking medication may be all that is necessary. For children with a serious emotional disturbance that is not usually initially the case. There are other services such as care coordination, family mentoring, or skill building (to name a few) that you and your child could benefit from. Which services and how often they are needed is something you should feel comfortable discussing with your providers.
My child is being bullied. What should I do? Will it help or will it make things worse if I talk to the school?
Bullying has often been accepted as a fact of life, but it is a form of violence and not something that we must just tolerate. If your child is being bullied find out as much information as you can about who is involved and when, where, and what exactly happens. Ask your child how they feel when this happens. Make sure to let your child know that it is not his or her fault. If the bullying occurs at school, it is important to reach out and let them know what is happening in order to partner together to address the situation.
Check out the resources below as a place to start and to help you determine next steps. If you have a care coordinator then be sure to let them know because they may also refer you to additional resources and supports.
Follow this link for more information about bullying from the American Academy of Child and Adolescent Psychiatry.
There is some very good information for both kids and parents at the Stop Bullying Now website.
To see the New York State bill on anti-bullying click the link.
My child talks about suicide, death and dying all the time. This scares me. What should I do?
When a child or youth makes a statement about wanting to kill him/herself or wanting to die it should be taken seriously regardless of the age of the child. That means that we need to contact our mental health provider for a recommendation immediately. This should not wait until Monday or tomorrow, but requires an immediate determination about the safety.
You can always call Life Line at 211 if you don’t have or cannot reach your mental health provider. Life Line can be reached by dialing 211 twenty four hours a day or calling 585-275-5151. Life Line can help you decide the necessary action that is needed.
See also the Fact for Families on Suicide from the American Academy of Child and Adolescent Psychiatry.
My child has started running away. I don’t know what to do and I am really frightened. What are my options?
Although having a child run away is very frightening it is not uncommon. In fact many of us can probably remember a time when we thought about running away from home when we were young.
The first option if your child runs away is usually to check with family and friends where he/she might turn to seek safety, shelter and comfort. Often they are looking for someone who will support them in the moment.
However, when a child who is thought to be suicidal runs away you should call 911 immediately. If you cannot find your runaway child you can call 211 and ask for the help of the police.
We really thought our child would outgrow these problems, but now I’m not so sure. What will their life be like and will we always have to care for them?
Don't try to guess what will happen to your child in the future. Every child is different as are their experiences and progress. As your child grows up they will surely learn new skills and find different ways of coping with life’s experiences.
Some children will do so well that as they mature they may not require the same level, if any, mental health care. While others may need longer term supports and services. Either child has the potential to live a full and happy life. In fact, there are many celebrities and other famous people you may not know who have a mental health issue (or physical disability) - check out this website, Disabled World, to see for yourself or look at this short list of famous people from the Mental Health Ministries website.
Although your child’s life may be different than either you or he or she expected it can still be satisfying and productive. All children have the capacity to become kind, compassionate adults living fulfilling lives.
You may begin to hear the words "transition age" which refers to youth ages 18-24 years old. If your child is high school age or beginning around 14 years of age, it is usually recommended that you and your child begin working with your team on a transition plan. The transition plan may be focused on identifying the right services and supports to transition your child out of care or from the child to the adult mental health system. If your child is receiving services and supports from other systems (i.e., school, probation, child welfare), then these partners should also be included in the planning process.
My child struggles in school and isn’t making much progress in learning. Are their special education services for children like ours? How do you access those services? What can they do?
It is true that having a serious emotional disturbance may interfere with a child’s ability to learn at the same rate of speed as children of a similar age. Inability to concentrate is not uncommon for children with emotional and behavioral challenges and things like anxiety, depression or other mood disorders can make school work difficult.
Please see the section of this website, School-related FAQs. Accessing the appropriate educational services for your child will allow them to get the most benefit possible from their education. Sometimes it may be necessary for your child to spend slightly more time in school to get the best benefit, but remember that they have an entire lifetime to focus on other things like college education or work careers.
Is there family support for me?
Yes! Supporting families is a core principle of System of Care and Better Days Ahead (BDA), a service of the Mental Health Association of Rochester, specializes in providing supports for families who have a child(ren) with emotional and behavioral challenges. Learn more.
You are not alone. Come to a Family Roundtable.
Meet other family members and caregivers who gather monthly to learn about a variety of topics ranging from child behavior to understanding Medicaid and anything else related to raising a child with mental health challenges and provide input into how to change the system. Learn more.
Warning signs – what to look for.
Children and adolescents with mental health issues need to get help as soon as possible. Here is a short list but click here for a more complete list of signs and symptoms.
- Sad or hopeless feelings that
don’t go away - Behavior change coinciding
with a big life change - Withdrawal from friends & family
- Using alcohol or other drugs
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