You were looking forward to having a family of four of five, or three kids, but things did not work out that way. You often hear of parents being one and done due to the fact that there were pregnancy or postpartum complications involved.
For instance, if you had a severe case of pre-eclampsia during your pregnancy to the point that it almost killed you and your baby, you would be scared to get pregnant the second time.
Or if your postpartum depression turned into psychosis, you would be afraid to risk it again. Perhaps financially you could not afford to have more kids. The reasons are endless.
However, what if you stopped having kids after having one who had profound special needs due to the fact that you are already burned out from the therapies, drained financially from therapies, and you are emotionally drained after dealing with extreme behaviors.
You are just emotionally tired from grieving that your child is not what you had dreamed of and you had to give up so many dreams.
Either way, you made the firm decision to not have any more kids and your only child has profound disabilities. I am not talking about having a child that has the potential to evolve and gain some independence and attain some milestones. You probably would have had more kids if that was the case.
I am talking about a child that will always mentally remain a baby to a toddler as they physically grow because you were afraid you would have more like that child and it would just drain your energy more and finances. What does your future look like?
What Does It Look Like When You Are One And Done Due To Fearing Any Subsequent Children Could Have Profound Special Needs?
You have made your decision and it was the best one for you. But since that is the case, there are many things you need to prepare yourself for as your disabled child ages. Let’s talk about them now:
You Will Miss Out On Important Milestones
You will never experience your child having their first friend, first date, graduating from elementary school, high school, and college. You will never plan a wedding.
Instead, you will be surrounded by others around you talking about their kids’ first milestones and you will also have siblings, if you have any that have kids, that will not just talk about theirs – but you will attending those which will make you feel heartbroken.
You Won’t Have Heart To Heart Conversations With Your Kids As They Mature
You will never experience talking to your child about mature things as they enter adolescents such as boys and girls, and the importance of safe sex. You also will never be in a place where you are giving your child encouragement after a friendship of theirs ends.
The only ‘conversations’ you will have with your child is telling them over and over again not to go near the stove (when they are 15 or 20 years of age or older) or singing Baby Shark songs or the alphabet.
You Won’t Ever Know What It Is Like To Be A Grandparent
I wrote a while back that I hated the saying grandchildren are God’s reward for being a parent because it is a given that parents of kids with profound special needs that are only children will ever become grandparents.
Parents of special needs kids go through a lot more challenges and face more adversity than parents of typical kids. This is something that these parents will never be able to look forward to at all.
At most, if they have siblings they are close to, they could be an active role as great aunts and great uncles. That is unless they are too busy caring for their adult with profound special needs.
You Will Be Perpetually Frozen In Time
A child with profound special needs will always have the mind of a newborn or of a kindergartener at best. Therefore, you will be having to change diapers during their adolescence and adulthood.
Perhaps you may even have to spoonfeed them and put straps over them to a chair so they don’t fall off. You may have to be cleaning up smeared feces on the wall when they are adolescents and adults as well as it will no longer be funny as it can be when a typical toddler does it – as you would look back on it and remember it being funny anyway.
You will be having to dress them, bathe them, clean them, and cut up their food the same way as you would if you were feeding a toddler. You will also be taking them to therapy for a long, long time.
You Will Not Get A Full Night’s Rest
A baby or a toddler will always be up in the night. The same goes for your disabled adolescent or adult. They can go up wandering around or can start crying in the night. They can also destroy their rooms.
You Will Need Babysitting For A Very Long Time
A child that is profoundly disabled will never be able to stay alone at home, even if you were to run a quick errand such as grocery shopping. Fortunately, there are respite workers around, and PSWs can watch your disabled adolescent or adult for an hour as they bathe them and clean them. You can take those opportunities to do your shopping.
You will need to go on a holiday, and you will never be able to go on family vacations, but you can arrange a time for the respite center to take in your child as you rest and recharge.
One Day You Will Get Old And You Cannot Care For Your Child Indefinitely
I always have urged parents with kids with significant or complex special needs to get involved with communities and respite centers early on for the sake of planning for the future. Your disabled child will need to live in a care facility or a group home one day. And the sooner they can be taken in, the better it will be for you and your family.
Even if you have other kids, would you want them to take on the responsibility of caring for their disabled sibling? They deserve to live their own lives just as much as you do. But it does not matter if there are others in the picture. You cannot care for your disabled child indefinitely.
Don’t forget as well that one day you will get old and need care of your own. If you don’t have any family you are close to then you have to plan your own care for the future. You don’t want to be alone at home or neglecting your adult special needs child as you are on your death bed.
And the only way that anyone would know that you would be dead is by smelling something foul by your home. In addition to that, a severely soiled diaper that has not been changed for days can bring out some disgusting odors that can reach to faraway places.
Prepare Yourself For Negative Thoughts And Feelings
You are going to feel anger, self-pity, resentment towards your child, and other people who are fortunate to not be in your position. You will be very jealous of those who have typical or even mildly disabled kids that do evolve and can be independent.
This is why it is important as well that you stay in touch with support groups even if they are online of those who know exactly what you are going through that are in the same position as you. You can lift them up and they can lift you up. These groups will help you feel less isolated (but you will feel quite isolated regardless) and will help you work through those negative thoughts so they don’t consume you on a daily basis.
You Will Be Prone To Depression And Burnout If You Don’t Get Enough Respite
You need respite and the good news is that a PSW can give you some respite for an hour or two a day so you can recharge and rest. Especially if you are also working. You also need to talk to others who understand and even go for therapy which you can do virtually. This will help you manage depression. However, if you are suffering from depression or burnout, the following signs will be present:
- Extreme sadness and hopelessness.
- Having a hard time sleeping even if the opportunity to sleep is there.
- Overreacting to minor problems or making mountains out of molehills.
- Having a hard time concentrating.
- Feeling extremely resentful of the child, and resentful and jealous of others who have typical kids.
- Having issues with rage and uncontrollable anger.
- Wanting nothing to do with activities and hobbies that once brought the parent pleasure even during a time when the child is in therapy.
- Drastic changes in weight and in appetite which could go one way or another.
- Feeling extremely impatient with those around you, especially towards the child.
- Having suicidal thoughts and if that is the case you must get help right away and see your doctor. (unfortunately, there have been cases of suicides happening for this reason as well).
- Prone to physical illnesses and infections
This means parents who have only one child which has a profound disability because of fearing that another child would end up that way must be prepared what to face in the future as the child physically grows as they mentally remain where they are. This means it is time to make plans for the future so you don’t have to worry about the disabled child staying in your care as they age and as you do as well.