This is a picture of a very old oak in the Eugene Rose Garden, in Oregon. It’s branches have grown so heavy that they are being held up by poles. It needs support to keep itself up, kind of like parents that have an Autistic child need support.
10. ZERO SLEEP!
As almost any parent knows; children sometimes have a very hard time sleeping. They may be afraid of the dark, wake at the slightest sound, wet the bed, get too hot or too cold easily, or suffer from night terrors. But children with Autism are notorious for not being able to sleep at night. My Little Man, for instance, will scream in the middle of the night, and not even open his eyes. Sometimes, if you go in there to comfort him, you end up waking him up. Other times, you try and go back to sleep and he keeps screaming until you go in there. The point is; we all receive very little sleep.
9. FINDING CHILDCARE!
Many parents may have a difficult time finding childcare. This can be because they don’t have the funds, have a hard time trusting people, or they think their child is too much of a handful. Parents with “special needs” children, such as those with Autism, have it even harder, for a variety of reasons. Since children with Autism are frequently none-verbal, this means they communicate in another way (which means you have to find someone who is not only capable of communicating this other way, but willing to). Children with Autism have sensory sensitivities that other people need to not only be aware of, but be respectful of. Children with “special needs” will have just that’ special needs. This means some are in wheelchairs, have crutches, or any number of things. This makes it very difficult to find someone qualified to help. But when all is said and done, finding childcare is hardest, because you have a hard time letting go and trusting that the situation will be ok, without you there to handle it.
8. GIVING UP PLANS!
I don’t mean “oh no, I can’t go to the movies because little Billy needs to go to therapy that day.” No! I’m talking about big plans. If you had been going to school (or planning to go to school) and your child gets diagnosed with special needs; chances are, you decided to stay home and care for that child. It’s love and it’s devotion, but it’s also hard. You had plans to become a (fill in the blank here). You wanted it, worked hard for it, and saw yourself “being” someone, and now, you are battling doctors, therapists, insurance, and the urge to go insane on a day to day basis. You might eventually have the means to follow your dreams (when the child moves out of the house) IF the child is ever capable of living on their own. This may sound selfish to outsiders looking in. But it’s hard to let go of dreams you once had and may no longer be able to fulfill.
7. NO FREE WILL!
Between the doctors telling you what to do, the therapists telling you what to do, the school system telling you what to do, friends telling you what is right, and even family arguing with you; it’s difficult to feel like you have any will of your own. You HAVE to take your child to ABA, so that they can “get better.” You HAVE to teach them this way because they can’t learn the other way. You HAVE to communicate with them this way because they can’t speak. You always feel like you HAVE to do this or that, and sometimes you forget why. Sometimes you think “ok, well I’m glad for that opinion, but guess what? I’m the parent and that doesn’t work.” Sometimes you just want to scream at people “I don’t care what you think, I’m doing it this way!” But there are a lot of things you absolutely CANNOT change. You cannot change the way they communicate, you cannot change how they feel the world around them, etc. Have someone else fill your shoes for a week and see how long it takes them to feel powerless.
6. ALWAYS FIGHTING THE SYSTEM!
I cannot even begin to explain all of the bull crap that parents of Autistic and other “special needs” children have to go through. We have to fight with schools about the aid our children need in class. We have to fight the teachers and schools about bullying. We have to fight the doctors on prescriptions and how we feel about them. We have to fight therapists for not listening to our opinions about our own children. We have to fight with the insurance on what our child needs to survive. We sometimes have to fight our own family and friends on what our child requires and how they aren’t the parent, so they don’t understand. It’s an endless battle that feels like we never win. There is always a new law to know or an addendum in the insurance or whatever, that we have to be schooled in (usually on our own). But the worst part? We have to do it because we are our child’s only line of defense.
5. FEELING INADEQUATE!
All parents will at one time or another (some more frequently then that) feel inadequate. You will feel as though you are not doing a good enough job or that you could have done a part better. But for children with Autism and other “special needs”, the feeling is a million times worse. Why? Because we literally can mess up the child’s life, if we aren’t careful. The first place is the guilt of not knowing if you are the reason for the child’s Autism. The second part is how they require special care daily, and if you don’t provide it, they won’t receive it. If you don’t recognize that your child is none-verbal and you don’t try and find another way to communicate; that child will never be able to communicate. If you don’t try and teach the child how to “get used” to certain sensations and read their own discomfort; they will never stop having meltdowns. If you don’t teach your child all of these things, every..single..day, the child won’t learn or remember them. You are literally your child’s only way to survive. They have to learn how to live in this world, by your teachings. So if you don’t do enough one day, or you FEEL like you didn’t do enough one day, it makes you feel as though you failed them and they’ll never recover.
4. TIME FOR YOURSELF!
Almost all of the parents that I know, say they don’t have enough free time. “I don’t have time to workout” or “I want to learn crocheting, but I don’t have the time.” For a parent that has a “special needs” child, this is absolutely true. Finding time in between the therapy sessions, doctor visits, the sensory things you have to do at home, school if the child has it, your daily chores, other children (if you have them), and so on. It feels exhausting. You don’t even get to sleep at night, because your child has trouble sleeping. There is literally no time off. And if you do manage to find an hour here or there, you are usually so exhausted, that you can’t do anything fun.
3. YOUR OWN MIND!
What do I mean by this? I mean; one of the hardest parts about having a child with Autism or any other “special need” is that your mind is the key to making it worse or better. There will be days when you feel like you were a horrible mother/father. You will feel like you didn’t accomplish a thing and you will regret your “laziness.” Other days you will be angry and think “WHY? Why did this happen to us?” Other days, you won’t be able to stop crying because it feels absolutely hopeless. The stress of child rearing is gargantuan. But the stress of raising a “special needs” child, is like trying to pick yourself up off the ground and giving yourself a picky back ride (literally impossible). Fighting your mind every single day, is just one of the challenges parents face.
2. KNOWING YOU CAN’T GIVE UP!
Have you ever had a ball come towards your face, and you knew you didn’t have time to block it? Or you see the person behind you not stopping, and know they are about to hit you? If you stop trying to communicate with your child, they will stop trying to communicate with you in that way. If you stop taking them to therapy for their behavior, their behavior will get “out of control.” If you stop trying to hug them everyday, they will never be used to the idea. You HAVE to go on, every day. You HAVE to keep going to the appointments, you HAVE to keep doing what the doctors tell you to. You don’t have a choice, if you want your child to be able to live comfortably in their own skin. No matter how tired, frustrated, angry, depressed you are; you have to keep trying. This feeling of never being able to stop, is exhausting.
1. THE WAY OTHER PEOPLE TREAT YOUR CHILD!
People stare. People whisper. People say hurtful things. Children, can be just as cruel, if not more so. Every time a child laughs at your child, every time a parent rolls their eyes at you child’s behavior, every time someone makes a hurtful comment; it gets to you. The absolute hardest part about being a parent with a child who has Autism; is knowing the pain they go through, and you can’t stop it! You can’t MAKE other people be more understanding. You can’t MAKE the other children stop bullying. You can’t stop your child from feeling hurt, inadequate, or utterly alone. Everything that happens to your child, happens to you. You may even feel it more because you are feeling it for the both of you. Whatever this world throws at them, you can’t make other people into better people. You can try and educate people, you can explain circumstances, you can and will, do whatever it takes to help people understand. But people will hurt your child, and there’s nothing you can do; short of following them around for the rest of their life.
Are there other things that make life hard, as a parent of an Autistic child? Of course there are. But these are just a few things I thought I’d mark down to show other parents that they aren’t alone in the madness.