Parenting a special needs child

Parenting a special needs child

7518870208_IMG_1916.jpgI have spent a bit of time lately trying to sort my feelings and reevaluate my goals, dreams, and daily strategy for life. Fun, huh? I recognized that I was going through the stages of grief and mourning. Mourning many losses I have had and mourning the losses of dreams and hopes that I finally realized were not on the path I am currently in my life.

Some of my losses come from being a single parent (that was not in my plans) while many come as a result of being the parent of a special needs child. One child that will always need to be cared for. He definitely makes life a bit more challenging. That does not mean I do not love him, or that I wish things were different. I get the challenge of learning many things from caring for him to watching him progress in life. I get the challenge of solving problems on a daily basis.

Things are not always sunshine and roses. It is tiring. It hard. It is worth it.

In reevaluating my strategy for daily life I realized that I have spent the better part of the last few years pushing against a mountain that refuses to move. I realized that I needed to stop being stubborn and to allow myself permission to stop pushing that mountain and accept the detour around it. Accepting this new path does not mean I will put aside all things me, but I won’t try so hard for the things that really aren’t meant to be at this time in my life.

As a result of this mourning for losses, which include certain life things for my son as well, I began to feel very down. Maybe falling down is what helps one to slow down so they can notice the right way to go.

During all this going on in my mind someone asked me why I do not ask for help with my son. It took me a bit to figure that answer out: it has become a way of life. I just do it. It is my normal. My family’s normal. I do not know another way.  In addition to that, most people are scared to help. There have often been times when people have seemed put out by helping. So I stop asking….and then there are the many times that if I have expressed that I may need help or things may be hard people automatically mention how I need to consider putting him in a home. It isn’t as if I haven’t thought about his long term needs and care. I think about it often, actually. I hope it never comes to that because that would be the wrong choice for him. I know it is a good choice for many, but not for him. However, since it seems to be common that people suggest it I stop letting on that it might be hard or that I may need help. Life is hard no matter what- it does not mean I want to get rid of my son.

I know people mean well. I know they are often trying to help. I know that many people cannot comprehend what life is really like with a special needs child, especially one with severe needs. I have spent the last several years taking care of all my son’s needs, keeping him alive, and preparing my mind for what is in the future-even mourning the loss of him growing up to have a family of his own.

After continued thought I began to understood even more of what I have been feeling. What really is the hard part of being a parent of a special needs child? I think for me it is the weight. I carry it all on my own. I worry about doing a good job. I worry about not doing enough. I know that he may not live a full life. I also know he could live long and my life cut short. I worry that every time he has a seizure something could go wrong. There are so many more things that are all internal that weigh in me more than the physical aspect of taking care of him.

The physical things are weighing for sure, but those seem easier than the others. There are multiple diaper changes a day, the extra messes, the special diet, the communication issues, the getting drenched when trying to give him a shower or bath, and so forth. But it isn’t necessarily physical help that is needed from others. It is support. Just emotional support-more than anything.

With all that said, I would be negligent to make it appear life is without joy or happiness as the parent of a special needs child. It is full of challenges that bring about growth in character. My son is always happy, and happiness is often contagious. I have also learned how to find joy in the simple things and to not take so many things for granted. Things like walking, eating, playing, and breathing. The joy brought from these simple things being accomplished is amazing! I get to experience sharp memories full of extra joyful moments that I never thought would happen.

For instance, I don’t recall the first time my other children walked. I know I was very excited to see them walk, but that exact memory is foggy at best  the memory of my son walking for the first time is as fresh in my memory as it was years ago when he was six and stood up in the middle of a floor and began walking. I was in the middle of a conversation with a relative at a Christmas party. I stopped talking and just stared with my mouth wide open in amazement. Yes, life may be difficult as the parent of a special needs child, but those good moments are forever stuck in the mind.

7518870208_IMG_1936.jpg

Then there are the every day moments that bring a smile or laugh. Such as when he lets me know he wants to be tickled, or he puts his legs over my lap when he sits next to me.

No matter the struggles any one of us have in life there is always something to be found to bring some joy. It is there.

 

Advertisements

how to not get sick from your kids

When children get sick there is usually someone else in the family who will follow with that sickness. When you have little children it is almost guaranteed to get sick, unless you take very sever steps to not get sick. I have determined there are a few things one could do to prevent sickness.

First let’s talk about what happens when a kid gets sick with something that is contagious. They sneeze and cough over everything and everyone. It does not matter how many times you teach or remind they how to cover their mouth, it will do no good. To combat that you either have them wear a mask (that they will likely take off sooner than later) or you put one on yourself. If you do not have a mask then you could put your child in isolation. Wait! That will not work. Unless your sick child is sick enough that they are bed-bound a sickness is likely to keep them going strong. They will not stay in isolation. Okay, since they won’t stay in isolation then you should probably go in isolation. That is your safest bed. Completely isolate yourself…okay, fine, I suppose that will not work either. Well, then, just get some disinfectant spray or wipes and follow your kid around. Every time they sneeze or cough clean the whole room.

There is also the matter of children and them sneaking drinks from your glass of water or other innocent drink you have. I know you should not do that, but that does not stop kids from doing it.

Whatever the case, it is quite difficult to not get sick when your kids get sick. I used to think that all those colds I caught while young would save me from some colds and illnesses that my children bring home. Yeah right! I am immune to nothing. So, every time my kids cough or sneeze right in my face I close my mouth and hold my breath. I pray that will not be the end of my current healthy streak. I admit that I was doing pretty good. The last few colds my daughter brought home I was actually able to avoid. I was proud of myself for not sharing drinks and not letting her cough or sneeze on me. However a few days ago when she was looking right in my face and sneezed I knew it was over. That was it. There was no helping me now. So, here I sit feeling like my body is really trying hard to not get sick, but feeling it will still come. Here I sit knowing that even if I can avoid one cold or sickness from a kid I cannot seem to avoid them all.

Good luck parents.

lifting another

Several years ago my son was diagnosed with seizures. After his diagnosis so many things became clear and I realized he had probably been having seizures for quite some time. I suspect since birth. At the time of diagnosis he was around five years old. At the time of diagnosis was also the time that my marriage to his father came to an end.

Those first several months I was afraid to let my son sleep alone. I kept him near me at night and was prepared with the camera to video record it for documentation. I was scared and nervous. Every seizure freaked me out. I was always alone too. There was nobody to help navigate things in the moment. Every decision of what to do was up to me.

After several years I have gotten used to the seizures and my response to them has become more routine than anything else. Always with lots of cuddle time and worry afterward.

This last Sunday my special needs son had a seizure. This was a more severe one for him. This was also the first that anyone in our church congregation had ever witnessed. I was amazed at how quickly so many came to help. After much thought I realized that what had happened was that others were helping to lift me and carry my burden of care for my son. Even if it was for a few minutes, it was enough.

Afterward a few had commented to me how I was so calm and they were feeling really scared for my son. I have learned to  react in a certain way to my son’s seizures, and although I appear calm I am freaking out inside. I never know when it could turn to something worse.

We all experience things that will be hard in life  some things we get used to and we appear calm when we do not really feel calm. Sometimes we see others who appear calm yet they are struggling inside. Do not let the appearance of strength fool you. Everybody needs at least a little bit of lifting. Whether a kind word or act, it can all mean the difference to one who is putting on that brave face.

 

 

finding hope

The last few days have been a bit troubling for me. I find myself desiring warmer weather and the ability to move forward with life. I have hit a standstill-or so it seems. At this standstill I find that I am more easily swayed to discouragement. My patience has hit a limit and life just does not seem to get better. So, what is one to do?

I took to writing today. Writing down my disappointments, the things discouraging to me, and the things I felt I could do better. I then wrote down the things I felt I needed to do to improve my outlook. I realized I needed to improve my outlook because I was experience a loss of hope. Hope for my situation in life to improve, to have a any kind of movement forward in life, and so forth. Without movement forward I feel lost. That means it is time for me to do something to change where I am stuck.

As a single parent it is easy to get stuck. For me, I am stuck in a cycle. I clean then my children destroy. I attempt to make things better. My children then destroy. Dishes get dirty then dishes get cleaned. Laundry continues to get dirty after being cleaned, all for it to need cleaning again. It is an endless cycle. Add that to attempts to raise children who will work and listen is daunting. Often they do not seem to ever hear a word said unless it is “dessert,” or “present.” Let’s just add the frequent crying, diaper changes, fighting, etc. It is an endless cycle. After so many days of these tasks and this kind of life it can become depressing, thankless, discouraging, and you get stuck.

Being stuck means I get to try to find a way out of the pit of despair. There is something to look forward to, even if it is looking forward to ten extra minutes of a room being clean over the last time. To look forward to a holiday, sleeping in, having a few minutes to oneself free of responsibility (think soaking in a nice warm bath).

So, whatever may be the difficulty in life as a parent or a person in any circumstance in life there is something to look forward to. There is movement forward even if it is small. There is hope even in the little things.

Tenderness

A few days ago my father visited me. I love my father. He comes often. Mainly to check up on me. Hopefully it is not to check and observe the messes that he may see-it often feels like that. While my children were playing he reached out his hand for mine. I took it. It reminded me of my grandfather doing the same things when I was young. He would just hold my hand across the arms of the chairs. Sometimes my arm would feel heavy, since I kind of hand to reach a bit for his. It is something I will always hold dear to my heart.

While holding my hand he said something. I admit, I don’t remember. The tears were already building up, and I was speechless. I attempted to tell him I loved him too. I looked over at the girls playing in an effort to break up the awkward moment. He kept holding my hand. He mentioned that he knew things were hard, that my job was hard, and that my kids have no clue how good of a mother they have. I did remind him they are good kids. I am grateful to be their mother, even if they are a handful.

I did take a moment to thank my father and apologize for any difficulty I caused him when I was young. I thank him every year on my birthday.

While thinking about the verbal exchange I had with my father while he held my hand, I began to wonder about my own self as a parent. I try so very hard to be tender with my children. To set firm boundaries, but be loving and kind. To not let them walk all over me, and to have them help out around the house. I tell you, it is darn hard to raise little people into decent human beings. I just hope I do not mess up. And then I get to the end of the day. The part of the day where I can decide how much I will beat myself up as a parent: ” Did I do well? I am such a horrible parent? Why did I not do that? Why did I do that? I am screwing my kids up? I need to….” and then, “I can try again tomorrow. I did do this and I did do that. Maybe I am not so bad afterall.”

really?

Really? I am just sayin’. Everything you read on the internet is not true…Now that we have that established. I do often head to the internet to search for ideas and hopeful solutions to problems. I recently looked up two things. How to get out of a funk and how to deal with a defiant toddler. The defiant toddler information seemed worthy of a test. So, for the past few days I have been attempting to try out what I had read. At this point I say, “yeah right.”

Parenting advice that usually has to do with “how not to yell at your kids ever again,” and “how to get your children to obey you every time” are hogwash. I say, HOGWASH! I am assuming that those articles and bits of advice are either written by people who have never had children, those who have grown children and have forgotten what it was like, have nannies, or have pretty easy kids. I only have four kids. Each one of them is different-big time. My two youngest include a crier and a push-the-button kid. I am not sure what is harder of those issues. The crying over everything or the yelling and being defiant, never obeying kid. Who, by the way, screams every time you tell her “no.”

Someone recently asked me, with a serious face, if I had tried telling my kids “no” yet. Cue sarcasm.: Um, no. I haven’t. I have never thought about telling them “no.” Wow, how do you do that? Maybe that will solve all my problems.

I don’t indulge my children either. This is their temperament. I have to learn how to communicate with them so they feel like they are communicating with me, without breaking their spirit, killing them, or do psychological damage in some way. Telling them “no” should not hurt them in any way, although they sure make it seem that way. I follow through with rules and with whatever I tell them. At least I believe I do, I will give myself some room for mistakes or changing my mind. I often realize I do make mistakes as a parent. That means I have to cool off, have time outs, and even tell my children sorry because they were trying to do something innocent and I misunderstood.

Parenting is darn hard. Did you get that? It is hard! However, it is so worth it. I hope that I do a good job. I hope they make good choices and are kind people. I hope they forgive me for my mistakes. In the meantime, while I wait for them to grow up, I will keep on keeping on. I will keep trying again and again. I will even search the internet again for other ideas that I can try with my children to learn how I can be a better parent and maybe, just maybe, find the magic language my kid needs to hear.

missing in action

I have been missing so long from this blog that I forgot my password. In fact, I forgot what platform I was using for this blog. I even forgot the name of my blog.  At this rate, I am surprised I can even remember my name. Do not even ask me about my age. This may be the last year I remember that.

One look at this blog at it is easy to tell I have not been around in months. Is that okay? I suppose it is. Who is going to fire me? Me? My kids? Heck, they don’t even know I have this. I have missed writing though. I look back at when I stopped writing and that was around the time I got really sick last year. It went through each member of the family. It was the sickest I had been in years. As I reflect back I realize that around that time I sort of gave up on some things. Projects I had in the making stopped seeing movement. This stopped having movement. Recovery from sickness seems more like a year-long recovery with life.

So, Here I am pouring out my thoughts to the world found on the web. That may or may not be better than talking to myself in the mirror.

I have quite a lot of time recently to reflect on life as a parent, as a mother, and as a single parent. I have reflected on who I am and what I want in life. I have discovered a few things about myself. I found that I am not a perfect mother. Not that I thought I was thinking I was a perfect mother before. This year has just tested every part of my sanity and ability to parent. I am still grateful to be a parent.

When I went to get gas yesterday I just sat in the car, unable to move. Life felt like it was really getting me down. After a good night’s rest I woke up today feeling a bit better. Ready to conquer what had beat me the day before. So, here I am renewing my writing. Reflecting and working through what is on my mind. Sharing and hopefully inspiring others along the way. In the meantime I have to remember that life happens. It does not always go as planned and there is always an opportunity to improve in some way. I woke up today. That is an accomplishment. I hugged and kissed my children. I fed them, and clothed them. I tried to do better than before. Will I succeed? I do not know, but I do know that I am succeeding in some way because I am still going. I have not quit.

For many parents it is a  matter of just getting through some days to try again the next. I think the hardest thing of all as a parent is not dealing with children but dealing with our own weaknesses and disappointments. How do you move on after bad relationships, financial upsets, low self-esteem, anger issues, addictions, or whatever else really holds us back? Often it is just taking it one minute at a time. Then one hour, one day, and so forth. Then start over again when needed.