still speaking, and they worked extremely hard to achieve it. Work to notice and celebrate these victories, as they can help defend against feelings of grief.

Parents should learn to be on the lookout for signs that they need support by utilizing mental health resources. Mental health professionals can teach and support in a variety of ways, including: how to be self-aware of your mental health needs, new coping skills, refresh skills, talking through situations, and they can be a sounding board for parents. Since the pandemic, virtual options are also more frequently available, which can address provider scarcity in more rural areas.

It's not unusual to experience stress in your marriage. In fact, many studies address a higher divorce rate when you're parenting a child with a disability. "When you have a child with special needs, your marriage is much more likely to be stressed. This is demonstrated by the numbers: Surveys show that the rate of divorce in families with a child with disabilities may be as high as 87% (Gold Buscho , 2023)." If you and your partner are feeling the strain on your relationship, a little marriage, family, or individual counseling can help talk through the issues at hand, and you can learn new ways to resolve the conflict and get back to living life together. Parenting multiple children with disabilities or special health care needs can put an unsustainable stress on a marriage. It's important that the couple work on communicating their needs in a healthy way, before resentment builds. It may not sound like an important need to a lot of people, but if you have multiple children with disabilities, it is crucial that you find time to recharge yourself and your relationship, whenever you can. Counseling can educate parents separately or together, on new communication tools that can help prevent future issues.

The care of children with disabilities or special health care needs is exceptional by nature. This means your self-care and relationship care must also be exceptional, in order to survive. Finding those moments where you can enjoy your favorite activities can make a big difference in your ability to stay calm during the tough times. In addition to finding alone time, consider working to build in time where you can connect with your partner. What do

you enjoy doing together? How can you work on your marriage while parenting children with exceptional needs? It could be something as simple as a shared TV series after everyone is in bed, or an outing to a preferred place. Finding time to spend together as a couple, building and maintaining intimacy in your partnership are significant challenges when you're used to putting the needs of your children first. However, consider the fact that your energy and patience are not limitless, and a strong relationship can be a good source of strength on the hard days of parenting.

Your energy and patience are not limitless, and a strong relationship can be a good source of strength on the hard days of parenting.

No one is going to tell you parenting is easy. Parenting multiple children with disabilities and/or special health care needs is infinitely harder. Consider educating whatever support system you have, as well as reaching out to community resources like parent support groups and your local PTI to fill in what is missing. Finding your community can really impact your parenting journey in a positive way. It's likely that over the years, parenting disabled children will come with waves of grief as you move through the rough patches. Take the moments available to you to rest and recharge, so you can problem solve at your best. Consider alternative ways for your children to complete a task that may allow them to be more successful. Working to develop self-advocacy skills can help children and young adults with disabilities develop the skills needed for appropriate levels of independence. Try and remember the positives, and take the time to really connect with your children over a preferred activity, and laugh with them. •

References

ABOUT THE AUTHORS:

Cindy Weber

Cindy Weber is the Early Childhood Training and TA Specialist for the New Jersey Inclusive Child Care Project and a Family Engagement Coordinator for the Genetic Alliance, both of which are projects that are part of SPAN, New Jersey's Parent Training and Information Center (PTI). In addition, Cindy is the Board President of the Cumberland Gloucester and Salem Family Support Organization. Cindy and both of her children share a diagnosis of PTEN Hamartoma Tumor Syndrome. Through their diagnostic journey and beyond, Cindy learned to adapt to a parenting journey full of unexpected specialists and last minute changes. Cindy is a member of various committees serving New Jersey families as well as serving families of children with disabilities nationally through her volunteer work with the Rare Disease Legislative Advocates and (NYMAC) New York Mid-Atlantic Caribbean Regional Genetics Network.

Tara Szymanek

Tara Szymanek works as a Training Specialist on the (PTI) Parent, Training, and Information Center Training Team, a trainer on the (SEVA) Special Education Volunteer Advocates Project, and a Family Resource Specialist on the (WRAP) Wisdom, Resources, Advocacy, and Parent to Parent Support Project. Tara is a premutation carrier and her twin twelve-year-old children share a diagnosis of Fragile X Syndrome. Tara is a military family member with parenting experiences in military programs, special education, and health advocacy systems. Tara is a graduate of Partners in Policy Making through the Boggs Center of New Jersey and is a member of various committees serving New Jersey families as well as serving families of children with disabilities nationally through her volunteer work with the Rare Disease Legislative Advocates, (NYMAC) New York Mid-Atlantic Caribbean Regional Genetics Network, and the National Fragile X Foundation.