Finding a Good Support System as a Special Needs Parent

Finding a good support system as a special needs parent is important for so many aspects of life. Having a support system allows you to meet your child’s needs, your family’s needs, and your own needs.

But finding a good support system as a special needs parent can be challenging. If your child has special emotional needs and/or behavioral concerns, support can feel very limited. This can lead to the overwhelming isolation many special needs parents feel.

There are Several Challenges to Creating a Support System as a Special Needs Parent

Dealing with the Loss of Friends

When people become parents, there is already a tendency for some to lose touch with their pre-child friends. You may have formed a group of new mom or new dad friends during pregnancy and after your child was born. Early on, I was able to participate in local playdates and mom groups. Then, as my children became aggressive, there was less acceptance. We began focusing on therapies. This reduced the time we could spend on the playground or going to other kid-focused activities. This reduced access to find support.

This is often the start of the special needs parent isolation. As children grow and needs and aggression increase, so does the isolation. It becomes a vicious cycle. You see what could have been your support system less and less. Your opportunities to participate in programs and develop natural supports become more limited.

It can be painful to watch other parent friends moving on to playdates and activities, while you search for yet another therapist. If behaviors are preventing children from having preschool or after-school experiences, then you are further limited in parent and adult interactions. 

Maybe your parent friends outright tell you they will no longer let their child be near yours. This is very painful. It is okay to feel hurt and upset when this happens.

Along your parenting journey, it is very possible your neighbors, friends, or even family have taken a step back. This can make you weary of trying to form new relationships. Take some time to mourn the losses. When you are ready, there are steps you can take to create a new support system.

Sympathy versus Empathy

Sympathy is understanding a situation from your own perspective. Empathy is understanding from someone else’s perspective.

In other words, sympathy is looking at a situation while standing in your own shoes. Empathy is attempting to stand in the other person’s shoes and view the situation as the other person may be seeing the situation.

While many people want to show empathy, this is a practice and can be difficult to do – even when someone wants to be empathetic.

Furthermore, some situations are so difficult for people to imagine or the person simply does not want to imagine it and so it is impossible to empathize. While no one wants their house to burn down or to be diagnosed with cancer, most people can imagine what that might be like. Having a child with a severe health disorder or one with intense physical aggression becomes more difficult for people to empathize with. At this point, special needs parents may receive some sympathy, but very little empathy.

Dealing with Judgements of Others

More often parents of children with special emotional needs and behavior challenges will not even receive sympathy. At “best” they will be ignored and more often they will be judged. It is difficult for people to imagine a cute little boy or girl or young adult having challenging behaviors or mental illness, it is easier to give a disapproving look and move on. When this happens from those who are supposed to be helpers, parents stop asking for help and can feel very much on their own with a very difficult situation. The fear of judgement can also prevent special needs parents from trying to make friends and being hurt again.

While there are many other barriers to creating a support network as a special needs parent, let’s switch focus to possible solutions and creative strategies you may find useful.

Creating a Good Support Network as a Special Needs Parent

Knowing some of the past and current barriers to creating a support system in your special needs parenting journey helps you in moving forward. You are reading this post because you are interested in finding a good support system as a special needs parent. This is a great step! You, your family, and your child all stand to gain as a result.

Consider Your Current Support Network

Think of all the people you have seen today, in the last, week, and in the last month. Write down their names, their role, and in what capacity you interacted with them. You may find you have more interactions with others than you first thought.

This list could include coworkers, a neighbor you waved to, a barista you spoke to in a drive through, teachers, therapists, family. You could have seen them in person, had contact through an email, received or sent a text.

Also consider if you would like to have more interaction with these people and what you enjoy about your current relationship with each person. Analyzing interactions may also reveal some people you need to limit from your life if you find they leave you feeling drained or feeling bad about your situation.

Once you have a better understanding of who is already in your network you can:

1. Build in more opportunities and interactions with those you already enjoy.
2. Reduce interactions you have identified as unhelpful or even harmful.
3. Start identifying and filling the “holes” in your network.

You may also find it beneficial to explore the post Reducing Barriers to Self-Care as a Special Needs Parent.

Ask Current Caregivers for Resources

Ask your pediatrician or family doctor for resources in the area. Doctors often make referrals to other doctors, therapists, or agencies for testing and services. They may also no of local support agencies for higher level medication management done with psychiatrists or parent support groups.

Reach out to your child’s school. If your child does not already receive special services through an IEP (Individualized Education Plan), this is a good place to start by asking for an evaluation for services. If your child already has an IEP, reach out the the case manager to ask about other resources in the community. Maybe there is another parent in your child’s class or of a slightly older child who may be willing to connect or be a mentor. The school board may also have resources such as a parent outreach program. I like to start with my children’s case managers and direct teachers to further build a relationship with them.

Ask Other Parents 

As you go to appointments you may meet other parents in the waiting room. Strike up a conversation! You can also ask them what resources they have found in the community.

Look Online for Support

There are several large scale and local groups online. If you are looking for local resources you may try asking on local newcomers groups and general community boards.

Online groups can provide information and support from the comfort of your home as well.

You can also connect with other caregivers on the Fullcup Caregiver Fabebook page.

Give Activities a Try

I was initially reluctant to attend a local parent support group. In my mind, I envisioned a real downer of a gathering. Instead, I found a community of parents at various stages in the journey – from me just getting an initial diagnosis of autism for my child to parents of children about to enter adulthood. My children spent an hour with college students training to become music therapists, educators, and occupational therapists. Each week I learned about a variety of topics. Many sessions were led by other parents and we learned from each other.

I have tried other activities that turned out to be too much for us, but I knew we gave it a try and kept looking. Sometimes what fits in one stage will not in another. Keep exploring based on your needs. Finding a good support system as a special needs parent can take some time and trial and error.

Use Caregivers and Respite Services

If you have a caregiver for your child and can leave your home for short periods of time, then you can explore a variety of social interactions. You can start small and go to a local library or go into a coffee shop. If you have had little interaction for an extended period of time, small steps are still steps.

You could also try a class, a book group, or local meet up. 

Finding a Good Support System as a Special Needs Parent: Summary

Having a good support network is so important to your overall well-being. This also supports the well-being of your entire family.

There are many barriers to creating a support network as a special needs parent. Explore your specific barriers at the moment to plan accordingly.

Assess your current support network. Even if you are starting with one person. You can grow your network with planning and active steps.

Explore some of the activities suggested in this post. Look online for local and large scale support groups. Ask current providers and the school about resources. Talk with other parents. Try support groups and activities you find online. Use any respite time to slowly add in social interaction if possible.

You may also find helpful information in Reframing Loneliness and Isolation for Special Needs Parents.

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