Emotional Support Resources

toddlerswithtism
Nov 29, 2023
9 min read

Updated: Jan 24, 2024

Support Resources

🤝 Whether you are new to this journey or you’ve been familiar with it for awhile, we all have times where we need support or a little extra help. We know how challenging raising a child with a disability can be and we want to offer you some resources that can hopefully make a difference in your life.

First realize it's OK to feel upset, scared, alone, angry and/or even happy. Not one journey is the same but there is plenty of people who can relate. We have a had a few posts stating they hate their child or wish there life was difference. THATS OK TO FEEL THAT WAY.

Autism isn't always a beautiful journey. Seeing your child struggle with "normal" day things, harm themselves/others, or just in their own world. It can take awhile to accept the challenges of autism.

IT DOESNT MEAN THEY DONT LOVE THEIR CHILD. It just means the caregiver is struggling and needs support wether it be in this group, freinds/family, therapist, or community resources.

🤎 One thing you can count on is that you are not alone. Statistics reveal that 1 in 6 children have a developmental disability, implying that there are potentially 1 in 6 parents struggling with caregiver burnout, depression, anxiety, or a sense of isolation. Fortunately, there are resources available to help us in the ongoing care of our loved ones.

‼️ If you or someone you know needs immediate assistance, do not hesitate to call the crisis lifeline or 911. Without judgment, we see you, we hear you and we want you to know you are NOT alone. The (988) Suicide and Crisis Lifeline and the National Domestic Violence Hotline have trained crisis counselors who are ready to help. You can call, text or chat.

https://988lifeline.org

Call or text 988

National Domestic Violence Hotline

Call 1-800-799-7233

Text “START” to 88788

https://www.thehotline.org

🔥 Caregiver Burnout 🔥

👉 Studies have shown that more than 50% of parents report a decreased ability to enjoy life as they face the challenges associated with raising a child with ASD or other developmental disabilities. The largest contributor to anxiety and depression in caregivers is a low level of social support. There is a significant correlation between the level of support a caregiver has and their ability to enjoy life.

Caregiver burnout is a state of physical, emotional, and mental exhaustion that can occur when caregivers are overwhelmed by their responsibilities. It often results from constant worry, sleep deprivation, financial strain, and the continuous need to meet the needs of their loved one. Symptoms can include emotions all over the place, canceling/avoiding plans with others, sleep disturbances, feeling resentful of others, feeling numb, irritability, having trouble concentrating, overwhelming sense of sadness, depression, severe anxiety, and a general sense of feeling unwell and “burnt out” as the name suggests.

Statistics show that approximately 17% of children nationwide have developmental disabilities, highlighting the significant number of families navigating this path. Unfortunately, many caregivers suffer in silence, and only a fraction seek help. It’s essential to recognize the signs of burnout and take steps to prioritize self-care and seek support.

So what can you do? Start by figuring out what type of help you need. There are helplines, therapy for parents and caregivers, support groups both local and online, respite care, daycare, preschool or summer camps to get that much needed break, emergency inpatient treatment for your child, residential facilities, group homes and adoption if that’s what fits for your family.

That's okay if you choose to put your child in a place to care for your child. Some of us are disabled or not mentally strong enough to deal with the all that we do. DOES NOT MAKE YOU LESS OF A PARENT.

There is no handbook you need to do what is best for your child, yourself and family.

👉 There are HELPLINES that are open to parents and caregivers of children with disabilities. They can provide informational support and assistance in finding therapy.

Sometimes you can use all these and still have feelings. The journey to acceptance isn't linear and even when you do accept it doesn't mean it stops hurting from time to time.

🔺The ART, Autism Response Team, can answer any questions you have regarding autism from where you can get a diagnosis to special education information, community activities, to where to find support. They will speak with parents, grandparents, teachers, friends or anyone that needs help navigating their journey. You can call their toll free number, live chat with someone or email them.

They are available Monday through Friday between 9 a.m. and 5 p.m. in all time zones. Live chat is also available between 9 a.m. and 7 p.m. ET.

1-888-AUTISM2 (1-888-288-4762)�Contact us online

En Español: 1-888-772-9050�ayuda@autismspeaks.org

🔺 The Parent Stress Line is a toll free number any parent or caregiver raising someone under the age of 18 can call for support and guidance. Trained volunteer counselors will answer your call 24/7, 7 days a week. You will never be asked for your name or phone number unless there is an immediate threat of harm.

1-800-632-8188

🔺 The Crisis Text Line provides free, 24/7 text-based mental health support and crisis intervention to people in their moments of need. A live, trained Crisis Counselor receives the text and responds, who can also provide you with local resources.

Text the word “HOME” to 741741 or visit https://www.crisistextline.org for info.

🔺 Suicide & Crisis Lifeline provides free, 24/7 confidential support for people in distress. Offers crisis resources for you or a loved one.

Text or Call 988 or visit https://988lifeline.org/chat/ to chat with someone.

👉 Signing yourself up for THERAPY is another thing you can do. We are used to therapy for our children, but start thinking in terms of therapy for yourself. Having a professional to talk to and get advice from can be invaluable. They are also trained in listening and for some, that may be exactly what is needed. There are different types of therapy including psychodynamic or “talk” therapy, cognitive behavioral therapy or CBT, and couples counseling for those co-parenting. You can search for a therapist in your area or you can also choose a therapist who offers telehealth appointments so you don’t have to leave your home.

Better Help is online therapy for individuals/ couples. You can apply for their financial aid for lower rate. https://www.betterhelp.com

Free Online Therapy has free chats with volunteers going through similar situations or a low cost option to chat with a professional. It’s free for your first week. https://freeonlinetherapy.org

Free therapy directory: https://www.parentingforbrain.com/free-therapy/

👉 Finding a SUPPORT GROUP in your area can be helpful if you’d like to connect with people face to face. You can search for a group in your area by searching “local support group for parents near me” or by including your city/county. Participating in a group (whether it’s online or in person) is proven to have benefits. It gives you an opportunity to be around likeminded people, to feel less stressed- isolated- & judged, reducing depression, anxiety and fatigue.

Special Needs Parent Support Discussion Group meets via zoom twice a month and is open to parents & family members with children with special needs and developmental delays. https://specialadvantage.com/events/

👉 What is RESPITE care and how do you find it?

Respite care is short-term care of a child (or adult) that relieves the primary caregiver. This can include someone coming to your house for a few hours or as needed, a drop off day program that provides activities, or daily/weekly care program offered by a community agency, residential facility or camps.

💲If you are need help paying for the respite care, funding options are available through your state’s Developmental Disability agency, family support programs, Medicaid waivers, or depending upon which insurance you have, it may cover the costs (certain state’s Medicaid programs & private health insurances).

The ARCH National Respite Network and find respite providers, information on planning for respite care, how to pay for care, as well as how to get paid to be your child’s caregiver. https://archrespite.org/caregiver-resources/

Autism Speaks has a directory to find respite care in your area as well as other services. https://www.autismspeaks.org/resource-guide

👉 Signing your little one up for DAYCARE, PRESCHOOL or a summer CAMP can help to give you a much needed break. Starting from around 6 weeks old through school age (5-6), you can enroll your child in daycare.

💲The Child Care and Development Fund provides help with childcare costs for low-income families who need care due to attending work or school. If you’d like more information on this fund, you can visit the following website.

https://www.benefits.gov/benefit/615

🏫 Preschool is typically for those ages 3 through 5 (although a child may become eligible at age 2 if their birthday falls within the same calendar year). There are two types of preschool, mainstream and special education.

Special education prek is designed in a way that meets a child’s educational and developmental needs for those children with disabilities or developmental delays. You can do a search of local preschools in your area and call them to find out more information.

For more information on how to find childcare, payment options, how to select a program and specific information by state. https://childcare.gov

🏕️ Summer camps are a great way to get your little one involved in something that’s educational and fun, meanwhile, giving the caregiver a much needed break. Many summer camps all across the nation have specialized educational activities, medical care, special outdoor activities, one-on-one interactions with trained staff as well as opportunities to be social with others. You can search for local special needs summer camps near you. Many camps offer discounted fees for early signup. Almost all camps will offer financial assistance paying for their camp. Some offer payment plans and special discounts. A few programs offer low-costs or are completely free, two of them are:

The Council for the Arts offers low-cost or free summer programs for kids & teens. Search for your location + council for the arts to find them in your area.

The Salvation Army is a nationwide organization that offers various free summer camps for kids for low-income families. You can visit https://www.salvationarmyusa.org/usn/equip-families/ to find a location near you.

👉 Sometimes, a caregiver may decide that a RESIDENTIAL treatment center or group home is best for their child and their family. This is an incredibly important decision and most times, a last resort. In a residential treatment setting, the child gets 24/7 around the clock care and is in a facility. A GROUP home has less supervision than a treatment facility does and is ran by agencies and paid for by state or private funds. Generally, treatment centers are for severe forms of autism or when behaviors are too much for the caregiver and family to handle. Funding for facilities and group homes comes from state grants, Medicare, SSI/SSDI, private insurance in addition to self pay.

To find out about residential center or group home placement, you can contact your local county health department, school district or visit the following website for a list of residential treats for autism & intellectual disabilities: https://childresidentialtreatment.com/residential.../

For immediate help, you can have your child evaluated for an inpatient treatment center which is short-term care usually lasting 30 days or so and can take place in a hospital or institution. Inpatient care is for crisis management and stabilization. Evaluations can take placeSome behaviors that can qualify for this type of care are psychiatric concerns, self-harming behaviors not manageable at home, eating disorders, urgent, out of control behaviors and unmanageable violence and aggression. ⚠️ If you are in fear for your safety, your child’s safety or another family member’s safety and cannot safely transport your child to the hospital for evaluation, call 911 and let them know your child is autistic and you need help transporting them safely.

Remember that many parents have walked this road and you have not done anything wrong. The entire family’s well-being needs to be considered when making this incredibly difficult decision.

For young children, finding long-term solutions can be a bit harder since many residential facilities are geared towards older children and teens. You may have to be open to placing them in another state if there are no options close to your home. For a list of treatment facilities (ages 5-12) you can visit https://childresidentialtreatment.com/residential.../

👉 Thinking of ADOPTION? Another decision some families make is to put their child up for adoption when other resources have been exhausted. You can call 1-800-ADOPTION or visit https://www.americanadoptions.com to find out more information on the process. It’s crucial to seek advice from an adoption agency or from counselors who specialize in this area. They can provide guidance, answer questions, and assist in navigating the process with sensitivity and understanding.

💰 Financial struggles are one of the leading reasons for caregiver depression and anxiety. Some ways to help pay for unexpected expenses, therapies (including transportation) or special equipment is to apply for SSI/SSDI, medical waivers, national/state/local grants and scholarships.

Check out our Financial Resources featured post for resources. https://www.facebook.com/groups/403585854124106/permalink/781511742998180/

📋 Other Related Featured Posts

SSI: https://www.facebook.com/groups/403585854124106/permalink/858564501959570/

Parent Guilt: https://m.facebook.com/groups/403585854124106/permalink/931253871357299/

Self Care: https://www.facebook.com/groups/403585854124106/permalink/839945123821508/

✨Remember, being a special needs parent can be extremely challenging, but you don’t have to face it alone. Reach out to the resources mentioned, lean on your support network, and prioritize self-care. You deserve support, understanding, and the opportunity to take care of yourself while caring for your loved one.

🛟 Other Support Links 🛟

National Autism Association https://nationalautismassociation.org

The ARC http://www.thearc.org

National Child Traumatic Stress Network https://www.nctsn.org

National Child Abuse Hotline https://www.childhelp.org

CDC on Developmental Disabilities https://www.cdc.gov/ncbddd/developmentaldisabilities/

🇬🇧 UK Hotlines & Immediate Help

24/7 Helpline: 116 123 (UK and ROI)�Shout: Text "DESERVE" TO 85258

Samaritans: https://www.samaritans.org/how-we-can-help-you/contact-us

Your Life Counts: https://yourlifecounts.org/find-help/

🇦🇺 Australia Hotlines & Immediate Help

Lifeline: https://www.lifeline.org.au/Get-Help/Online-Services/crisis-chat�LifeLine Australia: 13 11 14