Dr. Jill Emanuele Offers Advice for Parents of Special Needs Kids

My friend Al Roker opened up recently about how his 17-year-old son Nick, who has special needs, “doesn’t let anything stand in his way.” Parents with a special needs child are so often caught in a difficult balancing act, ensuring that their whole family gets the support they need. Read below for my conversation with Dr. Jill Emanuele, Senior Director of the Child Mind Institute, who has some great advice on how to do it…

Katie CouricIt’s such a difficult balancing act for parents of kids with special needs to make sure their other children are also getting the care and attention they need…what advice would you give to them?

Dr. Jill Emanuele: It really is difficult as just having children pulls a parent in so many directions, let alone having a child with special needs. In addition, parents often feel guilty about spending so much time on one child who is in need so the first thing parents can do is give themselves a break, and recognize that they are doing the best they can with a challenging situation.  Furthermore, it’s important for parents to rely on one another and take turns focusing on the child with special needs rather than it falling on one person. In addition, if extended family is available, rely on them for support. Finally, if a parent is on their own in taking care of their children, then one suggestion is to try to set aside even 15 min to spend with their other children. It sounds like a small amount of time but 15 minutes of undivided attention can make a big difference.

Every moment counts, so that’s great advice. What are the signs parents can look for to know if their other children are having a tough time?

Children communicate both verbally and nonverbally depending on age, developmental level, and personality. Think about how your child communicates with you in general and then apply those signs to their thoughts and feelings about their sibling. Sometimes the communication could be blatant; for example, your child expresses worries or negative feelings about their sibling, or perhaps becomes angry or aggressive toward them. In other situations, the communication is subtle; for example, the child begins to avoid their sibling more or shows distress.

How can parents know when there’s a real cause for concern…and what can they do to help their child adjust?

When a pattern starts to shift in a child’s typical behavior, such as a change in sleep, appetite, mood (among many possibilities), and that pattern starts to impact a child’s ability to function as they typically do, then there is cause for concern.  There are many possible ways to address the situation, including seeking out professional help, talking to other parents, gathering information from other adults in a child’s life such as a teacher, and depending on the age and ability of the child, having a conversation with them to find out what they are thinking and feeling.

Why is it so important for parents to be as honest as possible with the siblings of their child with special needs about what’s happening?

A typical way parents respond to worry is to reassure that everything is ok, and there is no cause for concern. Unfortunately, this communicates to your child that you may not really be hearing their distress and actually serves to increase the worry! To help with this, it’s important that parents communicate to the siblings of a special needs child (appropriate to developmental level) what is going on with their sibling, and how the parents are addressing it. Instead of telling kids everything is ok, ask them what they are concerned about and listen.   

In many ways, can’t having a sister or brother with special needs help kids develop empathy and other important skills? Tell us about the advantages of this situation…

I think it’s always important to look at the advantages or benefits of any difficult situation. It depends on the child, but I think in certain situations, it would allow for a sibling to develop empathy, learn important coping skills at an earlier age, and potentially even become a support for their special needs sibling. Children take cues from their parents, so if a parent is modeling these skills to their children, it’s much more likely the children will develop and adapt these healthy skills.

It’s interesting because when a child gets a physical illness like cancer, there are often a lot of resources for their siblings, but that’s not the case with mental illness and other special needs. Why not? Do you see this changing?

So true. Things are slowly improving, and there is still a strong stigma around mental illness. When a child gets cancer, society tells us it’s no one’s fault. When a child has a mental illness, society often blames the child or the parents. I am beginning to see more resources for children’s mental health, including my own organization, the Child Mind Institute.  The more the word is spread that 1 in 5 kids has a diagnosable mental health disorder and that they are common and treatable, the more the stigma can be reduced and hopefully eradicated.

We really can’t forget how important it is for parents to remember to take care of themselves in these situations. How can helping ourselves help us all be better parents?

It goes back to what the flight attendants tell you on a flight: put the oxygen mask on yourself first before helping others around you. A parent can only effectively manage their kids as well as they are feeling. The more you take care of yourself and model this for your children, the better the outcome for your children. Think about it. Many of the moments in which you label yourself a “bad parent” probably took place at times in which you were stressed, tired, overwhelmed, or feeling upset. Self-care is imperative for everyone, and when you are taking care of others, especially a special needs child, improving your own health and wellness is essential.