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.

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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.

 

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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.

Neglectful Parenting

The news and social media has been a buzz with a public service announcement or warning for parents via a video of a dresser falling on a child.  The parents shared their story to remind parents to be safe and what could happen. For the most part all of the comments I have read in regards to the video are pretty positive toward the parents but one stuck out to me. One comment that summed up the pressure parents feel and which actually hurts our children more than anything.

Sure there were comments putting down the parents and saying how they should not have kids unless they can watch them all of the time. However, it was the comment  about how the parents were neglectful because it took them around 2 1/2 minutes to get to their children’s bedroom and render aid.  It does not matter how long it really took, it is this kind of attitude that ruins people. Okay, not ruin, but it does not help. Here was somebody accusing others of being neglectful because of 2 1/2 minutes.  Did this person know how big the house was? Did they know where the parents were in the house or what they were doing when it happened?  What really made them neglectful parents? If 2 1/2 minutes away from my children makes me neglectful, especially when they scream then I ought to join those others parents through the publish shaming them receive.

What happens if my child get hurt while I am in the bathroom? Oh wait, I cannot do that unless they are in there with me because I cannot possibly let them out of my sight or I am neglectful. No more taking a shower alone, letting my kids play in their bedroom without me. I cannot let them go outside or do anything alone because if they get hurt then it is my fault and I am neglectful because it may take a minute or two before I can come to their aide. The thing is, society has it all wrong. It is not neglectful. I do present the idea that it is more neglectful to not allow them out of your sight.

Never allowing children out of your sight neglects their need for independence from you. Of course this is just observation and opinion, so I will not go into detail but I will give you the opportunity to think about it yourself.

There are many ways to neglect children, but it probably does not include many things so easy to dismiss as such.

Parenting is never easy and it especially is not easy when the whole world judges you and has some voice (directly or indirectly). There will be accidents, there will be preventable a and there will be times that you feel like a complete failure, but those things are not what makes you a neglectful parent. You look at what you do provide, who they are, what time you do give, and what you teach and then decide what kind of parent you really are then make improvements where need to be.

Keeping it all together

It takes great planning to take my children somewhere. Sometimes it works and other times my efforts leave me rather ragged, especially if some unexpected things come into play.

Today I attended a large service project with my church. They had babysitting for most of it. At one point they needed another serger and so I quickly went home to get one and brought it for others to use. Sadly it did not work. It was great to help out though and even watch my oldest daughter as she participated. For a few short minutes I was without children needing my attention.

Following the service project we were served dinner. It was at this point that my children returned to me. They didn’t want to eat as they didn’t like the options served for us adults (they had been food in another room). I attempted to eat my food but it took awhile as I had to keep chasing down my son who was stealing dessert off people’s plates that had been left unattended.

As soon as I finished my food I decided it was time to go. I gathered up my youngest-who had wandered off to play. I found my three year old and wrestled my son toward the exit. My son kept trying to take his place laying on the floor so my task was already turning out difficult. On the way out I remembered the serger so I went to gather that. Mind you, I was making sure not to put down the youngest as I didn’t want to chase her. While I was getting the serger my son went off in another direction and my oldest came to me with a problem that needed solving (sweeping up broken glass). With as many kids as I had with me at that moment I left the serger and took care of the broken glass. My oldest also handed me something else to carry and then she ran off to finish her project.

My attempts to leave the building must have been quite comical. After the glass was clean (hard to do that holding a kid), I chased the other two down, got my son to my purse, forgot I needed the serger so went and got the serger–left my son at the purse–then gathered the container of items–nope, that came last I forgot that near where I picked up the serger.  Are you still following me? Can you figure out where my kids are? Well, I was surprised I could find them at that point in my adventure too.

When I finally managed to get all my kids, but the oldest, the serger and my purse I tried to do it all and realized it would not work–not with a boy who refused to walk. This is where I threw in the towel.  I put down my purse and the serger. I put down my youngest but maintained a hold on her shirt (I was not about to chase after her) and put my son on my back. With him on my back and a kid at each hand I attempted, again, to leave the building. It was at this point I couldn’t help but laugh and even caught a few teenagers laughing along.

There I was with a disabled boy on my back, not holding on well, my three year old struggling to stay on task and my youngest refusing to walk. My only option to quickly exit was to pick up the youngest and walk as quickly as possible without dropping anyone or falling.

Finally! Finally! I had made it to the car. It was much quicker to buckle my children in their car seats than to exit that building. Exhausted, I quickly ran back in to retrieve my purse, the serger and the container of objects my oldest had handed to me.

I have to say that I was very happy to have my kids in the car, at least the three youngest. It took thirty minutes. Thirty minutes?! Next time I plan better. However I did get a thirty minute workout.

regular life

regular life

We invited a few people over to our home to eat cake and ice cream in celebration of my oldest daughter’s birthday. Prior to their arrival I thought to myself that I needed to invite people over more often as it would definitely inspire me to get the house clean.

This morning I cleaned the living room and moved onto the kitchen. My goal was to clean myself up after these two rooms were clean. Before long my daughter was telling me that someone was here for a visit. What?! Already! I forgot they had planned to visit earlier in the day. I was grateful that our friendship was not based on looks as I was still in my pajamas and sans bra. That’s attractive.  Not only that but when I walked into the living room it was back to its prior messy state. Great.

My friend offered to help clean and I let her know I was almost done. I really was as on a tiny home a small mess looks terrifyingly large.

After our guests left I was pretty much done. I didn’t want to clean again (I did just finish dishes), so I tried to procrastinate. While doing that-right before dish starting-I had a kid take applesauce to the table. Really?! Really?! Why dump the applesauce? To play in, of course. It was an “oh well” moment.

Before the “oh well” moment, my son shed his diaper and stripped the bed. Into the tub he went and I did attempt to clean the mattress. I am sure it will smell for days. It could have been worse. My daughter suggested using duct tape to keep his diaper on. I told her I had tried that once before. He outsmarted the duct tape and still managed to free himself from all that was on him. It may not have been close to bedtime but be earned himself the right to wear his footy pajamas-his favorite. That keeps the diaper on.

The day was good. I got on here because I had something to say, but as I started typing I forgot the main purpose of my post. Go figure. That’s my life. I share most of my aha moments with my sister over the phone. Sometimes I remember. Maybe it is it good I forget so that I can continually be inspired everyday-even if it is the same thing.

This is life. Take it or leave it. My life consists of the many messes that I clean up but most of all it is full of love. Now that is something I cannot argue.