Having A Special Needs Child Is Not A Blessing As Some Say And Let Me Explain Why

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. 

One Of The Toughest Days For Special Needs Parents Are Birthdays

Birthdays are a big deal. It is a day that represents another year that had passed of the child’s life, and it represents the milestones that are on its way. Birthdays are a reminder that your child is growing, maturing, and eventually will become an adult. With that said, kids’ birthdays are exciting occasions. However, there are times when birthdays are painful reminders. 

Your own birthday can be hard at a certain point because it is a reminder to you that you have aged another year. It is hard when your parents have birthdays because that is a sure sign that they are aging and they have less time. The same goes when it is your beloved pet’s birthday. And last but definitely not least, when it is your special needs child’s birthday, that is quite depressing too – that is unless they are making continuous progress and are closing the gap. 

Whenever a disabled child that has profound or complex needs has a birthday, it’s quite depressing. Your child has aged another year but is still just as much of a baby as he or she was since day one. Especially when your disabled child reaches the double-digits zone. That is a time when a parent of typical kids are expecting a new chapter in your their kid’s lives which involve new and meaningful friendships, dating, driving, graduating, college, and so on. Obviously not when the child turns 10, but I am talking about the teenage decade is when all of that is expected to happen. 

However, when a profoundly disabled child or one that has complex needs enters that big decade, it is just another painful reminder of how your physically growing child will be soon hitting puberty but will still not be able to talk or learn. Your growing child will soon need adult diapers. You will need to look into even firmer baby proofing apparatus because your disabled child will find a way to pull away the baby proofing apparatus that you already have placed. 

Every time your disabled child has a birthday, it is a painful reminder to you that instead of your child grow into a fine young man or woman that eventually will create their own lives and go off on their own – you will always have a big and growing baby or toddler. 

My son isn’t profound in that way, he has evolved a lot more than that. However, he has complex needs and him staying at home would have caused him to become an overgrown kindergartner. With him being placed in this residential school has helped him grow in many ways because he is getting 24/7 much-needed therapy.

Whenever he is about to have a birthday, it is still sad because he will never be like a typical teenager (he might once he reaches deep into adulthood), but the silver lining is that at least he has made a lot of progress and each year that passes by while he is getting 24/7 therapy – that is definitely something to be celebrated. 

However, for profoundly disabled children that are not capable of learning at all, birthdays will always be painful for parents. 

Have Compassion For Special Needs Parents, Not Pity

Special needs parents elicit two reactions from most people and they are judgment and pity. Sometimes both at the same time which is highly offensive and grating. And it is quite rare that they encounter someone who is quite compassionate. You may be scratching your head right now and wondering why I just said that pity was one of the responses that special needs parents get from others, but not enough compassion. Aren’t pity and compassion the same thing? No. Absolutely not. 

In that case, it is time to learn something that can really help change someone’s life, whether they are a special needs parent, a parent to a child that is ill, or someone who is just dealing with a horrific circumstance. Pity and compassion are not the same things. 

What Is Pity?

When you express pity to someone’s unfortunate circumstance, you are only acknowledging that their life is tough and horrible. You simply feel sorry for them. But have no intention to help them. And if that is not bad enough in any way, you also look down upon them and think to yourself thank goodness my life is so much better than theirs. 

I recall one time seeing a comment on an article about special needs parenting that was circulated on a page, and someone actually said that they were thankful not to have a special needs child and felt sorry for the moms that had any. I can tell you right now that this commenter was slammed quite badly for that, rightfully so. That is an example of pity. And special needs parents do not want or need your pity. 

However, what they do want and need is your compassion. 

What Is Compassion?

While you were going through something difficult and stressful, have you ever bumped into a friend while you were out and ended up spilling everything that has been going on in your life? And then your friend not only acknowledged how difficult the thing you were going through but listened to every word you said and cared what you said at the same time? Then the friend offered to help you out by finding resources to help you get through your predicament or something else that you would find helpful? What your friend has offered you is compassion. 

Compassion is not just acknowledging that you are going through something difficult but is expressed by showing empathy. Additionally, someone showing compassion would also look to find solutions or relief of any kind to help you with your situation. 

That means if a special needs parent went to a friend who really cares for them to talk about their day to day struggles, their friend would truly offer an ear and a helping hand in any way possible. The friend would either help find you resources for help with a particular situation or make some suggestions that do not contain any harmful platitudes that may or may not be helpful (it is the intention that counts) or would just be there for you no matter what. 

That means the only thing in common that pity and compassion have is acknowledging that someone is in a very difficult and unfortunate situation. But the difference is, being compassionate includes being empathetic and helpful, and pity only serves the ego of someone expressing it. 

In other words, those who express compassion see the suffering as someone who is on the same level as them. Those who express pity see the suffering as those who are beneath them, which unfortunately is a common thing for special needs parents

The Number One Reason Why You Must Never Tell Special Needs Parents How Strong They Are

Special needs parents have many pet peeves and one of those pet peeves is the comments they receive from others, even if they mean well. If you are one of those people who have said things that may inadvertently upset a special needs parent, I am not here to bash you in any way or form. I know that what you say comes from a good place but you need to realize how detrimental some comments are. 

One of the most common things that special needs parents are told by others who do not at all understand what they deal with on a day to day basis is how they were “chosen” to be the child’s parents. That is because “God gives special people special kids”. Yes, I know that comes from a good place but as it was already talked about, please do not go there. This is not helpful. The other common thing that people tell special needs parents is that they are so strong or they are warriors. 

Again, please do not say that to parents of children with disabilities. Do you want to know what the number one reason that is one of the worst things you can say to a special needs parent? That is because they are not strong. They have no strength left as it is drained on a day to day basis. They only do what they have to do because they are not left with any choice and they are neglecting their own needs and the needs of their typical children. This is as a result of having to constantly do their best to meet the very high demands of their special needs kids. 

You may still be confused as to why telling special needs parents how strong they are is detrimental. Again, they are not strong and they only feel pressure when you say that as you are putting them high up on a pedestal. A pedestal they are guaranteed to fall off because again, they are not strong. They are on their way to burning out if they are not already.  

Instead of making comments about how strong they are, why not offer them something useful instead? Something that does not go along the lines of I don’t know how you do it, or I could never do what you are doing. That also is more harmful than helpful. If you want to be helpful to a special needs parent that you care about, offer them help. If you are unable to babysit their special needs child (and by not wanting to do it shows you right there how difficult the parents really do have it), look for cleaning services so they get a break from having to clean the house. Run some errands for them. Do something to show that you really do care. Even if that means to listen to them without judgment and allowing them to vent. 

That is a lot more meaningful than telling these burned-out parents how strong they are. Because they are not. They are not stronger than you or any other parent of only typical kids. 

Special Needs Moms Are Invisible

First off I want to say that I acknowledge the lovely articles written which one has the title of Special Needs Parents, You Are Not Invisible. That is lovely an all and it sure will help make a special needs parent feel good. And it is apparent that the author did what they could to acknowledge that parents of children with disabilities have feelings, limited strength, and the same rights as anyone else (and really bravo for that, it means so much to see these articles written), but sadly, it is not the reality. Not based on my experience anyway, and I know others who are currently in the shoes that I was in will concur. 

I was sleep-deprived, feeling chilled, and running on empty calories that don’t get you far but the fact that my son may have been too cold or too warm was the worst thing for him to experience. The therapist at the school that he attended was concerned that the clothing he had was not meant for the right type of weather and the ‘poor thing’ was suffering as a result. And one even asked me in an accusatory way How would you like it if the only clothing you had accessible to you was too heavy for a hot day or too light for a cold day? Well, I feel either one all of the time because I am on my way to the land of Burn Out. 

Additionally, if I ever expressed how tired I was and unwell I felt, no one cared. All that mattered was that my son was comfortable and happy. But don’t they also know that he would be a lot more comfortable and happy if the mother was comfortable and happy? That was never going to happen until I had even a fraction of my needs met which rarely happened. It would have helped as well if anyone showed concerned for the struggling mother. 

How about when I have not been able to sleep because my son took my secured bottle of sleep medication (and gee why did I need it at a young age?) and placed it somewhere unknown? I did not even have any bit of sleep that night, literally none at all. But I still had to deal with his meltdowns, run errands while he was in therapy, and keep the house clean. And my poor daughter was not getting the best of me putting it lightly. But I had to put my big girl panties and deal with it because that is what a mother is expected to do, even more so a special needs mother. 

And you want to know what was also infuriating? My husband who was working 8 hours a day received a lot more sympathy because he worked all day and was tired so he deserved to rest. Therefore, I had no business expecting him to take on the load since all I did during the day was nothing especially since my son was in therapy for many hours a day at school. 

I was told to clean up my act often, and to take better care of my appearance, to lose weight, and to stop being so whiny and do the job I was expected to do. Because special needs parents are expected to be warriors and to put their needs last. This is the harsh reality. Special needs moms (and single dads) are invisible. Until one day, someone did something incredible. Something that was a miracle. It was like pigs flying. I was asked how I was. Not the small talk type of ‘how are you’, but it was a sincere how are you I was asked. 

That was music to my ears. That was foreign to me. You mean my well-being actually mattered to someone? They didn’t ask about my son and did not ask how he was. They didn’t ask about anyone else. They asked how I was doing. I told them the truth. I did not sugar coat. I said I was terrible and stressed. She cared. This woman who asked me and who cared was the one who organized respite care and in the end, helped me transition my son to the place where he is today. Even though no one else saw me, she sure did! I will always be grateful. 

A Special Needs Parent Is A Grieving Parent

As soon as your child was diagnosed with autism, you end up dealing with a flood of emotions and that will mostly consist of grief and sadness. You are going to grieve and be devastated by the fact that your dream had been ripped to shreds upon the diagnosis. Your child has autism which means there is a better chance than not that he or she will be dependent for life on some level, or possibly completely dependent. 

And at the same time, a part of you will be holding onto hope that your child will be magically cured by all of the therapy for years to come – even though this means you will have to take out mortgages and loans to fund the therapy since the resources are scant for parents. So perhaps a part of you is hoping that the original dream you had for your child will be restored. And while you are going through these emotions you have a flood of friends who are well-meaning of course, sending you poems such as Welcome To Holland. This is the last thing you want to see. 

And at the same time, you will find messages from your friends that consist of how strong you are and how amazing you are, and even happy stories of kids with autism being successful. You don’t want to deal with any of this because the sadness you are feeling is so raw. And even though you cannot compare having a child with special needs to actually physically losing a child, the parent is grieving. The child is still alive, but the dream is not, or the major parts of the dream that the parents had for the child is gone. 

And all you can do is hold onto hope that the therapy will allow your child to succeed and live the dreams you had envisioned. However, as the years progress and as the progress either significantly slows down, stagnates, or stops and the child regresses, then dream becomes even more distant so that hope begins to slip away. 

That child that you had dreamed of having that would one day have friends, go on dates, graduate from high school, college, land into a successful career, and eventually going off to getting married and bringing you some grandkids no longer exists. That is a bitter pill to swallow which means you are going to have to find a way to accept that your child will be either in special ed classes throughout school and will end up getting a sheltered job if your child is lucky. And then you will be dealing with waitlists when it comes to group homes or else the child will be in your care for good. In other words, either way, that dream is gone. 

How will you move onto acceptance? Sometimes you really can’t because you will be reminded over and over again what you had lost by seeing your child’s typical peers developing the way you had envisioned your child to be. Even if you move into a temporary state of ‘acceptance’ eventually the sadness and grief will come back. Because the next thing you will know, your child is 15 and is still needing help with showering and uses immature language (and many don’t use any at all and are not even toilet trained because they are not capable of learning). 

A special needs parent is a grieving parent, and no amount of Welcome To Holland letters will erase the grief and magically place them into a state of acceptance. They may potentially be grieving for life unless their child had miraculous breakthroughs and accomplished more than they had originally imagined. 

Let’s Talk About Envy And Special Needs Parenting

I am going to touch on something that many special needs parents are afraid to talk about, as there are many things they are afraid to be upfront about. However, this one is something that many of them fear expressing due to the fact that they are afraid that they will appear petty. And maybe what I am about to say sounds petty but it is very real and the feelings of parents of disabled children must never ever be invalidated. 

The emotion that these parents often feel is envy and flat out jealousy. I would say jealousy is more like it. Envy alone is longing for something that someone else has that you don’t but you aren’t resentful. But with jealousy, you are as it is envy and resentment at the same time. It is hard not to feel envy resentment towards parents of only typical kids.

These parents of typical kids have no idea of the struggles that parents with special needs kids will ever face. These parents take for granted that their only typical kids will reach milestones as expected. They will experience their kids having friends, going on dates, graduating from high school, college, getting careers, possibly getting married, and having grandkids. 

And even parents with special needs kids who have typical kids as well are just as envious even though they will get to experience these milestones with their typical kids. That is because they feel robbed of the family they had envisioned having. They are sad that they had envisioned being a family of 4 or 5 and cannot go on an enjoyable outing with the entire family because of their disabled kids. And they can only take advantage of outings with their typical kids when their disabled kids are in respite. 

Meanwhile, they watch other typical families enjoy life with their typical kids and don’t have to worry about arranging for respite, or unpleasant outings due to meltdowns or embarrassing moments if they have to take their disabled kids along. 

And I admit it is even to this day hard for me to see parents take pictures of their only typical kids and celebrate their milestones. Because even though I can experience that with my daughter, I cannot with my son. I will be grieving forever over the son I never had. If he was typical, I would not have had to send him away and we would have been a family of 4 living the life I had envisioned.

However, at the same time, I also know that no one has a perfect life. I also realize that the parents of only typical kids may be dealing with other crises that I know nothing about nor will I ever experience. I also realize that sometimes their typical kids end up dealing with many other problems unimaginable. I understand that. 

I also understand that my issues with envy and jealousy are my problem. It is no one else’s issue. Itis mine. And I will have to work on it for life likely because it is a major struggle I have had throughout my life. Even before my son came into the picture, I was jealous of the popular girls. I was jealous of the skinny girls. I was jealous of the students that got straight As. But even for special needs parents who never used to struggle with jealousy, they do when it comes to watching families enjoy their time with typical kids while they are struggling with special needs kids. 

So I will say this. Because I realize this is an issue I have, don’t let it stop you from celebrating your children’s successes. Go and celebrate it. As long as you are not rubbing it into my face at all, share your gifts. And I know that we all have gifts and challenges. Some may have more challenges than others, but everyone has the right to share their successes and gifts. 

All I will ask is to not judge me for sharing my honesty, because I can tell you right now, I am not the only parent of a disabled child that feels pangs of jealousy. Most of them are afraid to admit it because of being judged which special needs parents are judged for other reasons as well. But I am being frank. Jealousy is a major issue when it comes to special needs parenting because we long for what you have.