Building New Hopes and Dreams After a Diagnosis
On this Page
Finding out your child has chronic condition or disability can be
devastating. You may have feelings of sadness, confusion and hopelessness. On this
page, a parent of a child with special needs shares her experience, insight, and
wisdom that she learned from parents like herself.
Remember first and foremost to choose hope
Dr. Jerome Groopman states, “Hope is a decision, not an emotion
nor a feeling.” From a parent’s perspective as long as you have
hope, you can overcome the most difficult of times or challenges.
Each situation is unique, but our challenges are often similar
Some children get a diagnosis early on, sometimes even before birth. Other
children may get a diagnosis much later due to illness or accident. My son was still
very young when we learned he had Cerebral Palsy. No matter when or what the
diagnosis is, it can be hard to see your child not reaching typical milestones,
dreamed expectations, or optimal health. Most families of children with special
health care needs have similar feelings and challenges and can be a rich source of
support, information and assistance.
Remember that knowledge is power
When you work with doctors and medical professionals, you may find it hard
to ask questions or not know what questions to ask about your child’s needs and
services. The truth is, none of us know everything, even doctors don’t have all the
answers right there, and may have things to learn about your unique child. It’s
important to build trust with them, as your relationship with them is likely to be
long-term.
Although doctors have had years of medical training, you have the training
on your child. The goal should be to work together, as a team, for your child. You
have a voice, and you can tell them how you feel and what your opinion may be.
Sometimes your feelings may not even make sense, but parents often have intuition or
“gut feeling” that can make huge differences in their child’s life. Don’t be afraid
to ask questions or for them to explain things again if you need it. You are the one
who will take this child home after the doctor visit, and knowledge will help you to
be more confident as a caregiver. You are your child’s best advocate!
Keep a binder with all of your child’s information
This can be helpful for frequent hospital or doctor visits, when it’s
important to have the information at hand. Many times, we are stressed in these
situations and forget things that we thought we could never forget. You can find
a health care notebook on the Care Notebook page.
Find support and build new friendships
You may feel lonely for a while, as some of the people you know cannot
begin to understand what to say or how to react to your new situation. As you
navigate through the special needs community with your child, you will meet new
friends in new circles who will understand.
You will meet other parents who have children with special health care
needs that you have a common bond with. You might meet someone at the doctor’s
office, or at a support group, or in an online group. Seek these people out. Some of
them will become life-long friends, and the bond you share may be greater than you
have ever had. These friends will understand that part of you and your family that
others may not, and you will understand what they have gone through. Your friends
who are having a hard time understanding what you are going through may come around
and get it, so don't give up on them – they are still important, and we need all the
friends and support we can get!
Look for a parent support group with others who are going through similar situations
There are lots of groups through local resources, online and in social
media. There are various support groups for:
- parents and caregivers
- siblings
- grandparents
- just for moms or just for dads
Research and find credible groups that will help you not only survive
but thrive; the health of parents produces the best care for the kids. You can
search online and within social media outlets for groups for parents of children
with special needs, or for a specific diagnosis, for example “moms of children
with autism.” To take it a step further, you could search for your local groups,
such as: “moms of children with spina bifida Las Vegas.” See Support Groups for more information.
Set up a support system and don’t be afraid to ask for help
When people ask, “What can I do to help?” although it might seem
uncomfortable, be ready with a list of things you need. Ask them to give
attention to your other children, or come sit with your child with special needs
while you run errands or have a date with your significant other. Sometimes
friends or family may be reluctant to stay alone with your child because of
medical or behavioral issues they are not comfortable with. Instead you might
suggest they help by just being there with your child while you and your spouse
watch a movie or go out on the back deck for some alone time.
These seemingly small things can take some pressure off of you and
give you a chance to relax and refuel yourselves. Many times, people wish they
knew what to say or how to help and it can start to alienate us from them, and
them from us. Many friends and family members feel for us, and really want to
help, but don't know how. If we can help them to be involved and included, they
can learn to accept things, understand and can grow in this adventure with us.
See Caring for Your Family & Friends for more
information.
Seek out available resources
There are so many resources out there for you to get information. Below,
you’ll find a few that can help your story be a success. There are organizations to
help you find resources and refer you to agencies that may be helpful.
Family-to-Family Health Information Centers (F2F HIC)
These are organizations that have families helping families navigate
the health care system, funding and family support resources. The
family-to-family model is one of the most comfortable ways to find resources, as
you are speaking with someone who also has a child with special health care
needs and an understanding of what you are going through. To find one in your
state go to National Center for Family - Professional Partnerships (F2F HICs).
Parent Training and Information Centers (PTIs) and Community Parent Resource Centers (CPRCs)
Parent Training and Information Centers (PTIs) and Community Parent
Resource Centers (CPRCs) are organizations that provide parents with information
and training about disabilities, rights, roles and responsibilities in the
education system and resources in the community, state and nation. Every state
has at least one Center. Find your parent center at Find Your Parent Center.
Early Intervention
If you are concerned that your child is not meeting developmental
milestones you can call Early Intervention to ask for an evaluation. They work
with kids from birth to age 3 and provide service coordination to help families
connect with resources and information. Find Early Intervention Service, which
is also referred to as Part C in your state at State Part C Early Intervention Coordinators.
211 provides free and confidential information and referral at
2-1-1 North America.
Resources
Services for Patients & Families in Idaho (ID)
| Service Categories | # of providers* in: | ID | NW | Other states (5) (show) | | NM | NV | OH | RI | UT |
|---|---|---|---|---|---|---|---|---|---|---|
| Family Support Services | 13 | 23 | 68 | 15 | 44 | 37 | ||||
| Local Support Groups, Disability/Diag | 8 | 20 | 45 | 8 | 21 | 107 | ||||
| National Support Services, Disab/Diag | 123 | 123 | 123 | 123 | 123 | 124 | ||||
For services not listed above, browse our Services categories or search our database.
* number of provider listings may vary by how states categorize services, whether providers are listed by organization or individual, how services are organized in the state, and other factors; Nationwide (NW) providers are generally limited to web-based services, provider locator services, and organizations that serve children from across the nation.