There are judgemental and mean people around who purposely say insensitive things to parents of kids with special needs. And there are also very well-meaning people who also say insensitive things but what makes them forgivable is that they say things that come from a good place and try to make you feel better. It’s their intention that is forgivable but the words they say can be just as hurtful.
The ones that get to me more than them telling me how strong I am or what a warrior I am (please do not put special needs parents on that pedestal so high up) is when they say things like God gives special children to special parents, or God doesn’t give you more than what you can handle (oh yes God can do a great job with overestimating), or that it is a blessing to have a child with special needs.
I am going to say right now that for anyone who says that a child with special needs is a blessing obviously does not have a child with special needs because I am going to break it down as to why it is not a blessing. When I was in the worst of my burnout and depression before my son was transitioned, I downright said it was a curse. But now that isn’t my situation anymore thankfully is that it is a challenge that I was not capable of handling. Right now I will explain why having a child with special needs is not a blessing (unless the child with special needs accomplished so much and the hard work that the parents did with the child truly paid off but that is sadly not my situation so I can’t speak for these parents either):
1. Parents Miss Out On What It Really Is Like To Raise A Child
Where do I even begin? How about parents of kids with special needs miss out on seeing their kids experience real friendships, expected milestones, dates, driving, college, marriage, and so on. They miss out on the experience of raising a son or a daughter. In my case, I have experience with raising a daughter but I have no idea what it really is like raising a son.
I have a son but I don’t know what it is like raising a bonding with a son. Of course, it is not his fault but the fact that he has complex special needs caused me to miss out on the experience of having a son. And for the parents who don’t have any typical kids and only a child with special needs (or only children with special needs), they miss out on much more.
2. Siblings Miss Out On So Much
There is no guarantee that siblings will get along regardless. However, it makes me sad that my daughter missed out on having the experience of having a typical sibling. It hurts my heart when she expresses it. And I used to feel guilty for saying this considering there are plenty of parents who for whatever reason were one and done, but not anymore because my feelings over this should never be invalidated. That is their pain, and this is my pain.
3. Life Is That Much More Stressful With Children With Special Needs And Rewards Are Not A Guarantee
Forget about the emotional heartache that comes with caring for a child with special needs. How about how physically exhausting it is, and the financial strain for therapies that are not guaranteed to work? Is it a blessing having to come into your child’s room to see another hole in the wall? Is it a blessing to clean up poop on the wall because your child is protesting over something and refuses to express it in other ways even though he is fully trained?
How about the parents that have to change their 15-year-old’s diapers? Is that a blessing?
Is it a blessing to work endlessly with your child past the point that you are exhausted and nothing has been absorbed? How about dreading family outings because you fear that your child will have a meltdown or embarrass you instead of looking forward to them? Do you get the point?
4. It Is Hard To Accept The Fate That Your Child Will Be Dependant For Good
The ultimate dream for every parent is to have kids that will grow up and become independent on their own. But that will not happen with kids that have complex or severe special needs. Mild special needs, yes, but not if it is moderate, complex, or severe. Either you will have to accept the fate of your child trapped in an adult’s body and will be in your care for good. Or, do what I did, transition your child to a residential school in their teens so a group home placement at 18 is guaranteed. And that is the best recommendation because you will not be able to care for them. You also do not want to put the responsibility on your typical kids can cause them to worry whether they will have to be responsible for their special needs sibling.
It is so hard to accept that even if your special needs child does not live with you and you have that empty nest that they will have to live in a group home which means they will always be dependent. But it is the best thing for them as it will help them become as independent as they can, even if it is a little.
5. Your Dreams Are Dead
Face it, when you have a child with complex special needs, you have to kiss your dreams goodbye for the child you envisioned having. The RESP college fund you set up after the child was born will end up having to cease and you will have to create an RDSP fund instead. That is because they will not be able to make enough money (and some may never be capable of working at all) so you will want to make sure they have enough money to get by later in life.
The careers that you dreamed about your child having, that is gone too. At best, your child will work in a factory or do inventory work in a supermarket or a hardware store (and they have to be on the higher functioning end for that), while having a manager check on them often.
6. Grandchildren Will Not Be In The Cards Unless You Have Other Typical Kids – And Even Then It May Not Be The Case
This one will be a very painful one for parents who only have kids with special needs. Sure, you could have 4 or 5 typical kids that refuse to get married and want to remain childless which will give you the same result. But what can you do? It is their lives and you have to respect that. I will also have to do the same if my daughter doesn’t want kids even though she says she does. Or your typical kids may want to have kids but struggle with fertility problems or are not able to find the right mate – or they could change their minds later on.
However, if you only have children with complex special needs, this is another dream you will have to let go of. If you are close to your own siblings, then you can be the best great-aunt or great-uncle to their grandkids since that will be the closest thing you will have when it comes to experiencing grandkids. But not all special needs parents have that luxury, and even so, it will always leave pain in their hearts that they will never have that true experience.
So tell me now. How is it that having a special needs child is a blessing? You may still find ways to invalidate what I had just written. But until you actually care for a child with complex special needs for one day, or even just one hour, you’ll see how ridiculous that platitude is. It is not a blessing.