I have been blogging for about a year. I seem to have finally found my niche blogging about things I have experienced on a personal level. I often share raw, unadulterated stories of my life as a mom of a special needs and medically complex child.
One of the things I have learned recently is that people so often do not know how to interact with special needs kids and families. Which leads them to ignore us all together or say terribly inappropriate things!
I think people do this is because, acting the “right” way towards a special needs family seems daunting. Some people question whether or not a family wants to openly discuss the child’s needs and challenges. Some people try to treat the family like any other family. Some people truly do not know what is off-limits and some people are just down right rude!
Integration between typically developing families/kids and special needs families/kids gets dicey more often than not.
I have made a short list of the top things I think you should definitely avoid saying to a special needs parent, and avoid thinking about all together. In no particular order:
1. Don’t ask a special needs parent if he/she needs anything to let you know.
This sounds kind. And it is. But, most special needs parents are made of true grit and don’t want to ask for help.
Not to say that all parents aren’t made of some grit, but it is different. Special needs parents, especially with medically complex children, juggle glass balls in the air. If they drop one it could be detrimental to their child. The days they want to throw in the towel and give up are the days they need to forge ahead wielding every weapon in their arsenal. If they do not, their child could suffer a great deal.
So, that said, listen to these parents. Hear what it is that seems to be giving them the most challenge in daily life and offer it up if you can. A parent may not ask you to make her dinner, but he/she will not turn away a casserole that is dropped off by a kind friend at the end of a hectic day.
2. Do not EVER, EVER, EVER, ask ANY parent, “I hate to sound rude, but what is wrong with her/him”? NEVER. EVER.
Uh, nothing is wrong with him/her, what the heck is wrong with you???
I understand that people are curious. But nothing ruffles a parent’s feathers more than speaking as though his/her child is less than another.
Ask something like, “What types of activities does your child like to do with the other kids”? “Do you think your child would like to read books or color with my child”? Even saying, “I will be honest, I am not sure what is the best way to teach my child how to interact with your child. Will you help me to understand what ways my child can interact with yours so that this is a positive and successful experience for them both”?
By asking these questions you can help parents to open up and share with you the most positive ways your children can enjoy interactions together.
Curiosity may get you forever. The parent may never divulge a diagnosis or disability to you. And that is okay. Because, the bottom line is that you want to respect them and their family and you want to interact with them in a positive and meaningful way.
3. If the child does not have a broken bone or a cold/flu do not ask if a medical issue can be “fixed” or if it will “get better”.
Some families not only battle with special needs for their child but they also battle medical complexities that baffle even doctors. Our beautiful children are born the way they are born.
They are born with genetic differences that cause them to have medical challenges that may always be present in some form or another.
They cannot be “fixed” because they are not broken. They will not “get better” because they are not sick. Please have empathy towards these medical complexities. Which really just requires lending an ear not offering a solution.
4. If you know of a special needs parent who stays at home, do not assume they have “time” for things that you do not.
Special needs parents stay home, often because they assume the role of primary caregiver. This is a job of great proportion.
It requires scheduling things like therapies, doctors appointments, nursing care and school meetings.
It requires researching the current conditions and diagnoses for the child.
It requires learning caregiver skills that would otherwise not be needed like, tube feeding, changing g-tubes, placing NG tubes, taking blood sugar, suctioning trachs, moving heavy children from one piece of adaptive equipment to the next, etc.
Make no mistake, it is a JOB. Parenting may be the very best, most fulfilling, most rewarding and most privileged role you ever get to play. However, it is a ROLE, a JOB, a RESPONSIBILITY. You learn new skills as a parent, you learn new ways to handle emotions, you may develop traits you never thought you were capable of developing.
So, these parents likely have little time beyond their “job”, which is usually, 24/7. These parents don’t have time to dwell on the issues in life, think about the future, or even take the proper time for themselves. They typically have time for the moment they are in and not much else.
5. Do not assume, do not label, do not fall victim to stereotyping these families as ENTITLED.
I. Can’t. Even.
This is a huge, HUGE, problem for a lot of special needs families. The outside world thinks they have a problematic sense of entitlement. As with anything, it may be the case for some, but DO NOT label.
Let’s be clear. Special needs families are not better than typical families. They simply have special needs. These special needs have to be met in order for these families to enjoy the same liberties and opportunities as typical families.
Yes, they may get nursing care, free diapers, free formula, early admission to events, etc. BUT, they would most likely rather not have those things.
They don’t WANT nursing care, they NEED it for the safety of their child.
They don’t WANT free diapers, they NEED them for their large child who will likely remain incontinent for many years or for life.
They don’t WANT free formula, they NEED it because it is likely required for g-tube feeds or special diet concerns regulated by doctors.
They don’t WANT early admission to events, but they NEED it to get the equipment and child into the event and settled with easy access in and out for emergencies.
Let’s not get confused and think we need to treat special needs families like everyone else. That’s not really possible in most cases, and it’s not really what these families want.
Special needs families want to be included like everyone else, they want to enjoy the same opportunities as everyone else, they do not want to be limited. And, for these things to occur, they need to be treated differently than the typical family.
For these families to enjoy limitless opportunities and inclusion, special exceptions, strategies and accommodations must be made. It is not reasonable for a typical family or individual to get bent out of shape because of it. Be glad, as a typical family, you do not need these types of accommodations. It is not a “treat” or a “golden ticket” for these families. It is a way of life.
6. Embrace a friend, family that is new to the special needs journey.
You may have known them before they embarked on this awesome, challenging and character building journey of special needs parenting. But, you will soon find out that the new life will change them in ways they never imagined.
They may have major challenges with communicating with their non-verbal, or hearing impaired child. They may be legitimately frightened, daily, for the safety of their child. Some children battle frequent seizures, exposing them to physical harm from falling or banging. Some seizures for these kids cause them to stop breathing and go into respiratory arrest. Some kids do not have the neurological wherewithal to stay with adults and they run, they run, fast. Some kids require life saving medications, daily, on time, no mistakes. Some kids are so sensitive to stimulating activities that they lash out in fear and/or anger as a response, perhaps harming themselves or those around them (often their caregiver or parent).
These are all things that the average, typical parent does not need to navigate. So please, give these parents time, space and comfort as they navigate this new path.
Many couples cannot continue to stay on the special needs course together, and marriages or relationships falter. They find out the stuff they are or are not made of when faced with a life change like special needs parenting.
These parents may find new outlets, have new priorities, have new ideas of what they find to be worth their time. They may need you as an outlet. They may need you as a shoulder to cry on. They may need you as a comrade in arms.
Be kind, these family members, these friends, will need your patience, your love and your empathy. They may need you to be a rock for them to hold on to when they feel they are drowning in a sea of uncertainty. With true grit, love, support and hope, they will eventually find their way and settle out along the journey. But, it will take time.
When a family joins the special needs journey, everyone who was once associated with them is along for the ride in some form or another. You may have pictured their lives to be different. You may think, “I want more for them than this”, “How can God let this happen” or “I can’t handle the pain they are going through in this new life”. But, it is not about you. It is about them. They will come to accept and embrace this life and you as a friend, a family member need to do the same or they do not need you in it.
7. Avoid being the eternal optimist.
It is important to stay positive and optimistic. But, try to refrain from comments made by the eternal optimist like,
“Oh, he will be just like the other kids, it will just take time”.
“I believe she will walk, someday. It. Will. Happen”.
“I know, in my heart, he will speak like the other kids’.
You are not a bad person for wanting to say these things. You are not wrong for thinking them or believing them in your heart.
A special needs family needs to balance hopes and dreams with reality. Special needs families need to feel peace with the fact that their child will not walk, talk, or be “like” the other kids.
And, that is okay.
It is a difficult balance. A special needs family needs to accept that the physical and neurological limitations for their child may fall within a broad spectrum. The family has to feel comfortable with any place their child lands on that spectrum. And it is hard to do that with the eternal optimist whispering in their ears.
Each family balances reality and hope differently. What may seem to you as giving up hope for their child’s progress may actually be them acknowledging and coming to terms with what may or may not be in their child’s future. So support them through it. Be positive and follow their lead.
If you have a special needs family in your life, you are blessed. They are different, yes, but those differences can bring new, enriching things to your life. Embrace it. Cherish it. Nurture it. Love it.