With Valentines Day this week it seemed like a good time to talk about showing love and support to families impacted by special needs. So often I get questions like, “How do I show a family with a child with special needs that I care?” and “What should I say or not say?” and “How can I best support my friend?”. These are all amazing questions. They show an incredible desire to love another by helping and coming along side as a friend. What a blessing it has been in our own lives to have had friends who have asked these same questions and come along side our family.
As you can imagine the special needs community encompasses many different diagnoses, and thus needs can vary widely, however there are several consistant areas in which families have similar experiences and similar needs. These are the areas we will be touching on.
What to Say:
One of the ways we show we care is by what we say. However, knowing what to say can be difficult; especially when we do not have any personal experience or knowledge of a particular situation. And knowing what to say often has just as much to do with knowing what not to say. Here is some helpful advice given by families with children with special needs on what to say and what not say to.
Don’t say: “They didn’t have children with (insert diagnoses) when I was in school or raising my kids.” The truth is that sadly in years past people with various disabilities were placed in institutions instead of family homes, and were not able to attend the same public schools because the federal law, renamed Individuals with Disabilities Education Act (IDEA) in 1990, did not exist until 1975 to oversee student Individualized Education Plans (IEP’s). Therefore people with diagnoses that we see today did ofcourse exist. We, as a society, simply did not get to see or interact with these individuals in the community or at schools for the most part in the recent past.
Do say: “Thank you for sharing your child’s story with me.” If interacting with a child, teen, or adult who has special needs is a new experience for you the best approach is the simplest one. Simply listen and learn from what the parent chooses to share, and then thank them for telling you about their child, keeping the comments and questions to a minimum at first.
Don’t say: “Is your child highfunctioning or do they have some sort of special skills?” While it’s true that some people on the Autism spectrum have heightened interests or skill levels in certain areas, it is also true that others have developmental delays. Unfortunately by asking this question it implies that if the answer is no, then the opposite must be true and their child must be labeled as “low functioning?”. Clearly not the intended outcome of the question.
Do Say: “I’d love to know more about (insert child’s name)?”. Often people ask questions like the one above because they care, and they want to know more about the child. By asking an open ended question, the parent can share whatever they would like and to whatever extent. Most parents with children with special needs already have a sort of script in their heads that they can pull out to educate others on their child’s skills and needs, likes and dislikes, etc. But it’s best to let the parents take the lead on this.
Don’t say: “Have you tried (insert therapy, treatment, protocol, etc)?” or “ I know someone with (insert same diagnosis) and they tried”. The fact is that if they are an engaged parent, they have most likely already researched, signed up for, and tried just about everything there is to try. Its commendable to want to help make things better for someone; however many diagnoses are life long, and the constant search for the next possible symptom reliever or cure can be mentally, emotionally, and financially draining for families.
Do Say: “ How are you guys doing? or “Is there any way we can be praying for you?”. One way to be supportive is to check in periodically and ask simple questions like these. Families just need to know that there is someone who cares and is there to lend a listening ear if needed. They can take it from there, and let you know if there’s any new treatments or therapies that they’re involved in and would like to share.
Don’t say: “God must’ve chosen you to be the parent to this special child because he knew you’d be amazing” or “God doesn’t give you more than you can handle so He must’ve known you could handle this”. These are certainly kind complements, however there are a couple of things to consider here. The first is that the last statement is an often mis-quoted bible verse. I Corinthians 10:13 is speaking about temptation and not trials and hardships in life. It says, “No temptation has overtaken you except what is common to mankind. And God is faithful; He will not let you be tempted beyond what you can bear. But when you are tempted, He will also provide a way out so that you can edure it.” This is an amazing verse, but it isn’t talking about hard times in life, and it doesn’t say that we will never be given more than we can handle. The fact is that we do have allot to handle and most of us are exhausted, and if we’re honest we don’t want to be the amazing chosen one. Many of us have wrestled hard with this. In the end what we know with certainty, as the parents of children with special needs, is that we cannot do this on our own. That this is more than we can handle alone. We know better than anyone else that we have to draw strength from outside of ourselves by relying on God, taking times of rest, and excepting support from family and friends to be able to do this.
Do Say: “Is there anything our family can do to help support you guys when we get together?” “What would you like me to tell my kids so they can better understand and be a supportive friend?”. These are practical questions that will make the greatest impact and help to create the loving supportive environment you are striving for as a friend or loved one.
What to Do:
So often we just want to do something to help. Here’s where the practical stuff of life comes in. Families caretaking for children, teens, or adult children with special needs can have more on their plates than 1 or even 2 people can handle with the daily grind of therapies, doctor appointments, school meetings balanced with work, time with other children and spouses, shopping, cleaning, and cooking. It can all become very overwhelming and can easily lead to isolation from others. Think of what it’s like to have a new born baby in the house and how overwhelming the caregiving can be along with the stress of the sleepless nights and the struggle to balance everything. And then remember that for many of these parents the caregiving needs, sleepless nights, stress and isolation don’t stop when the child ages. So here are some things that you can do to help support and to show the practical side of love.
Offering to bring over meals is a perfect way to help take a bit of the load off of a family. It means time spent making a meal can now be spent playing a game with another child or catching up on the day with a spouse.
Gift cards are wonderful especially if given for a place that can drop off or has a drive through. This way the family doesn’t have to interrupt the child’s therapy routine to go out or they can easily drive through with the child in the car making it easier.
Cleaning someone’s house is a touchy subject but if they have expressed the desire to get someone to clean their house you could offer to pay for a housecleaning service. Laundry can also be a touchy subject, but the fact is that it backs up quickly and it sure is a practical help. You could offer to take on their laundry for the day and bring it back when its done on your regular laundry day.
If you both have children around the same age or even if you don’t it could be a great way to serve by offering to have their other child or children come play for a few hours, go out to lunch, attend an event together, or carpool. It can give the parents a much needed break to get a nap while their child with special needs is in therapy and for the other child/children to socialize with others and continue with their own scheduled events.
Asking if the friend can go out to coffee or lunch, and when that’s not possible offering to pick it up and bring it to their house is another great way to show you care. Time with friends is so important. Isolation is a very real thing for our families, and can easily occur as others are busily going on with their lives and life events. Offering to come over can be a good option when a child, teen, or adult child with special needs needs a consistant and familiar environment. This way they can be in their own home with their own things, and you can both still have your time together.
Texting or sending cards of encouragement or little care packages are all great ways to show you care. When our daughter was too agitated to go out of the house or even have others over, this became my life line to friends. Don’t underestimate the power of a card containing an encouraging verse, a short text to say, “Thinking of you and wondering how you’re doing?”, a favorite flower dropped off at the door, or even a funny GIF or marco polo video chat that they can pick up and return when the time is right for them. Todays technology gives us so many ways to send our love and support.
Above all never stop asking and never stop trying. For families like ours life can be very unpredictable and things can change in an instant. Crisis can happen quickly and cause us to drop plans at the last minute. Our child’s needs can keep us from being able to participate in certain events. But please never stop asking and never stop trying to find a way to connect with us and share your love.
