Parent and Guardian Resource Center
We're here to help you and your child(ren) navigate through the next step in your journey! Look below to find detailed tips and guidances.
1. Understanding the Diagnosis
Learn about your child’s diagnosis.
Using reputable sources, such as the Center for Parent Information and Resources, be sure to understand the behaviors associated with the diagnosis. Keep in mind that many times, there may be multiple diagnoses. To be organized, I recommend having a folder with all of your child’s records, including the diagnoses, assessments, and therapy notes.
You’re not alone!
Join family support groups and connect with experienced parents for advice and resources.
Look below for networks you can access.
Networks For You
Parent to Parent USA
https://www.p2pusa.org/
About: “At Parent to Parent USA, when someone asks what we do, we say we empower and support parents, nationwide.
Why? Because we understand being a parent of a child with special needs can be a challenge — we’ve been there!
The journey is filled with hills and valleys and sometimes feels a little overwhelming. So, we’re driven to ensure no parent feels alone. Ever.”
Family Voices
https://familyvoices.org/
About: “Family Voices is a national nonprofit led by families and friends of children and youth with special health care needs (CYSHCN) and disabilities. We connect a network of family-led organizations across the United States that provide support to families of CYSHCN.”
National Parent & Youth Helpline
Call 855-427-2736 or visit https://nationalparentyouthhelpline.org/
About: “If you are struggling as a parent, caregiver, child, or youth, the helpline is here as a dedicated resource for those seeking immediate support and guidance 24 hours a day, 7 days a week.”
2. What about school?
Learn about Individualized Education Programs (IEPs) and 504 plans. These are tools that help ensure your child receives the support they need, including extra test time, assistive technology, and more. Work with the school counselors to make sure your child is receiving the proper accommodations. Remember, communication is key!
Wait, what are IEPs?
It is a legal document developed for each student in a U.S. public school who needs special education. It ensures that the student receives specialized instruction and related services (Source: University of Washington)
I recommend reading through this document for more details: https://www.ed.gov/sites/ed/files/parents/needs/speced/iepguide/iepguide.pdf
3. Build routines!
Several studies have found that building routines are beneficial for those with IDD.
Routines provide structure, predictability, and a sense of security, which can help to reduce anxiety and promote independence. By breaking down tasks into smaller, more manageable steps, it is easier to digest and helps build confidence for those with IDD. It also promotes predictability, making each day less stress-filled!
Remember that no routine is one-size-fit all. It is important to consider individualization, taking into account their strengths, preferences, and needs. This also means that the individual should be involved in making the schedule with open discussion to preferences and boundaries. As a result, each day isn't a structure the individual needs to fit into, but rather an enjoyable day.
Lastly, using visual supports is key. For example, timers, visual schedules, or color coding can help the individual understand the schedule better.
4. Prioritize emotional well-being
It's important to check in with the individual frequently regarding their mental health.
Research shows that those with IDD are more susceptible to mental health conditions, such as anxiety, depression, and bipolar disorder. For example, a study of children with genetic causes of IDD found that nearly half had at least one mental health or behavioral problem.
It is crucial to identify symptoms early on. Neglecting them can lead to the worsening of the condition. Addressing the condition can include providing access to specialized mental health services, promoting social inclusion, and addressing any potential barriers to care.
And it's not just mental health. Frequent mental distress, experienced by a disproportionate number of individuals with disabilities, can negatively impact overall health, leading to chronic diseases, poor health behaviors, and limitations in daily life.
So, if you take one thing away from this section, it is to communicate with the individual frequently and talk about their emotions or if they are facing any challenges internally.
5. Lastly, you!
Parenting a child with IDD can be demanding, both physically and emotionally. Make sure to schedule breaks, seek respite care, and join parent support groups (at the top of this page!)
Remember that your well-being directly impacts your child’s, and of course, your health matters.
And don't worry. Although everything may seem overwhelming right now, it will all work out.