Siblings, no matter what our relationship is like with them at any given moment, are the only people in our lives who really know what our childhood was like.
When planning for our family, my husband and I determined (half jokingly, half seriously) we’d need to give our children at least one sibling so that they could have someone with whom they could complain about us and feel totally understood. Sibling relationships are also unique in that it is the one relationship that has the potential to span more years than any other relationship.
However, what happens when the relationship between siblings includes dealing with special needs?
There is a lot that can be hard to understand, frustrating and even scary when you’re a child living with a special needs sibling. There are approximately six million people in the United States with special physical, mental and developmental health issues. This means that there are a whole lot of families out there who are supporting some level of specialized care in their home.
Parents of special needs kids learn a lot fast and furiously to care for their child and to become the expert of their child’s particular needs. The risk to families when special care enters into the picture is that everyone else’s needs become minimized. While there certainly is a huge spectrum of care needs, any family that is negotiating specialized appointments, medical care and individualized education plans on a regular basis will benefit from extra support for their typically developing child, in addition to the supports for their special needs child.
Below are some ways to provide that extra support:
Share Information/Educate
When mom and dad are coming to and from appointments for one child, the other children will do better by being included, at an age appropriate level, with what is going on. They’ll naturally be curious and perhaps anxious about what they’ve been observing. It’s only fair that they know why so much attention is being paid to their sibling.
Explain what is happening in language and terms that are appropriate to their development. If you aren’t sure what that would be, consult with their pediatrician or teacher. Additionally, those working with your special needs child can refer you to a social worker or other professional who can guide you in this area. Your children will need information and education throughout their lives about their special needs sibling as the needs of their sibling will likely change over time.
Listen Openly and Nonjudgmentally
When your typically developing child shows signs of anger, embarrassment or frustration with his or her sibling, allow them space to express those feelings without fear of being deemed an unsympathetic or “bad” sibling. Most children will feel a wealth of compassion for their special needs sibling, but at the same time they will feel all those other more negative emotions.
Empathize and validate their feelings while of course setting any needed limits around negative behaviors that may be co-occurring. Keep in mind any sibling relationship is going to have both tender and fierce moments, let those happen and resolve themselves naturally where possible.
Expectations
Sometimes siblings of special needs children try to overachieve by being the “perfect” child. It’s easy to overlook this as it is so nice to have an “easy child” around, at least at first. However, sustaining “perfect” doesn’t tend to last without real problems and those don’t feel or look so nice.
Try to incorporate the idea of making mistakes as well as trying hard into family expectations. For example, tell your children, “Everyone in our family tries their best every day to be kind, curious, playful and learn from their mistakes as best they can.”
Group or Individual Support
Any sibling of a special needs brother or sister could benefit from knowing they are not alone in the experience. There are books that speak to the sibling experience, as well as support groups for siblings of the special needs population. The Sibling Support Project website will provide book lists as well as support group information. Additionally, your child’s health care providers may be able to refer you to groups, literature and, if necessary, individual treatment options if your typically developing child is struggling to cope.
One-on-One Time and Respite
It is always helpful in families to give children and parents one-on-one time with each other. This gives both parent and child time and space to enjoy each other’s company without anyone feeling the need to vie for attention.
In the case of special needs children, depending on the level of specialized care, respite services may be needed to meet this particular need. Discuss with your health care provider how you may qualify and access respite services. Respite has saved the lives of many a family in my mental health practice.
The bottom line is that it gives every member of the family a break. While many parents have expressed guilt about needing respite, it not only gives parents and siblings a break, it also gives the special needs child an opportunity to connect with others and potentially have a home away from home. Additionally, don’t forget to arrange time away from home for your typically developing child as well. Generally, overnights with relatives or friends will suffice in giving your typically developing child a break from everyday life at home.
Compassion All Around
Finally, all of the above support that is advised for your children this all applies to you the parent, too! You can’t teach your typically developing child that his or her needs matter as much as the needs of your special needs child if you don’t take care of yourself.
Remember that every so often spending time with other parents in similar circumstance may be helpful. Additionally, a bit of time alone, a date night, a therapy appointment for you, a walk with a friend or all of the above, can help you sustain the energy needed for the hard work of parenting.
This article was published in the Keene Sentinel on October 1, 2014.
