Confirming once again: CATS. ARE. AWESOME.
Reply by *d*
We could make a video of my 10 month old doing the same thing. I picked up a bucket of play magnets at least six times today. If she can pull herself up to it, it’s on the floor. We can add a few clips of her acting like a dog too, and a vacuum…….
When my husband and I found out that we were expecting our third child, we were very excited. One of the joys of expecting a child is sharing the news with friends and family. Unfortunately, instead of hugs and congratulations, we received critism and half-hearted blessings. It was disheartening. By the time I shared the news with my co-workers, I was in tears. This baby was making his or her way into the world and we felt very alone in our joy. The scarce number of people who were sincerely happy for us was not enough to extinguish the guilt and sorrow we were beginning to feel. It was not what I wanted or expected when announcing a pregnancy. My husband and I may have took the hard road to find each other but we had a strong marriage, probably because of it. We had problems concieving our first child but were eventually blessed with two boys. We also worked hard to care for our family. The doubt about our third pregnancy was surrounding our disabled son. We were met with questions and disappointment as if we never considered what it meant to bring another child into the world while navigating the issues related to raising our disabled son. We were treated like the pregnancy was completely unplanned and the decision to expand our family was rash. I will never forget how the reaction put a dark cloud over my excitement.
Our disabled son was two when we conceived our third child. I was told by my doctor that we should consider having another child if it was something we may want to do in the future. I had health issues that could possibly halt a chance to get pregnant again. When faced with this information, we considered all of our options. Yes, raising a disabled child had it’s difficulties but we had decided that we wanted him to be a big brother, even before his diagnosis. We also weighed the risks and benefits to having an infant in the home. We knew we had to be careful allowing him around a baby because he didn’t fully understand how to be gentle and boundaries were something he was struggling to understand. We knew his health issues took our time and resources. We also knew the mutual benefit of having another child in our home would be for our disabled son and another child. I realized with some sorrow that a new child would most likely surpass his cognitive abilities but with that would be a chance for him to have a playmate close to his cognitive level. After discussing and weighing these risks, benefits, and more, we carefully made our decisions based on what we desired for our family. Neither of us wanted to let his disease also take away the joy of expanding our family. It had already taken so much. We didn’t want him to grow up knowing he was the reason we never had more children. How did we know he would not enjoy the company of another sibling? We didn’t. We decided another little person would join our sometimes crazy, chaotic family and we trusted in something bigger than ourselves to help us if it became difficult. We had to ignore the nay-sayers and be happy about the decision we had made because it was best for us. I wish we would have felt supported in our decision. Instead, we were explaining why we came to this conclusion to people who really had no true understanding of our family. We felt like we were two teenagers trying to explain our unexpected pregnancy instead of a married couple announcing a joyful pregnancy. In hindsight, no one would have got the lengthy explanation we were giving, we would have asked for the respect and support we needed. We would have to let time prove we were strong enough for the challenge.
It’s three years later and we have no doubt that we made the best decison. We were also surprised with a fourth child. We had decided to stop at three and elected to have surgery to help with my health issues. It was a week before my scheduled surgery date when our youngest daughter snuck in under the radar. We were met with the same skepticism by the same people. Yet another announcement was shrouded in gloom due to the lack of understanding. Most people waited for our reaction because they knew another baby would take more time and resources. My husband and I were once again elated to have the opportunity to bring another life into the world. I think some people would rather try to be a voice of reason than that of support and it’s sad. Sometimes it’s needed but not in a situation such as this. No good was going to come from criticism. No matter what, the baby would arrive in several months. Sharing doubt and disappointment would only make the critics feel better about themselves. It didn’t do anything but snuff the joy out of our announcement. I would hate for anyone else to feel the way we did.
******
I wrote this post because the question of having more children after a disabled child comes up in support pages often. I wanted to offer my advice and share our experience. My husband and I knew we had a strong marriage and we supported one another. We knew if no one else supported us, we were okay with our choices. We did what was right for us. We knew our son’s weaknesses and we knew bringing another child into our family was within our capability and within his capability to learn how to interact with another sibling. Our oldest daughter is now his best friend, she tells us often. She sets up his play bowling set in the hallway over and over because she knows he can’t do it himself. Sometimes he yells at her or gets aggravated but she keeps helping. They are mutually learning something from each other. She is learning tolerance and he gets a chance to socialize. My disabled son has just as much to teach us as we have to teach him. He is teaching my typical children that friendship isn’t based on ability or disability. Friendship is time spent together and learning to love differences. They look forward to doing something they enjoy together, like playing pretend bowling. I can only hope his life with us will effect our typical children in a positive way. Maybe they will choose to play with the ignored child at school that reminds them of their brother or they will stand up for intolerance because they have already been taught to meet disability with understanding. I am sad no one else could see what my husband and I did three years ago. It is sad that I will always think of the disappointment others shared instead of joy when we found out my beautiful daughters were going to be a part of our family. I have forgiven but it isn’t easily forgotten (a subject of my next post). If we had decided to stop having children, that decision would have also been made with love. We would have appreciated the same support and understanding with either decision. Being blessed with a special needs child also means taking extra care with decisions for our future. We did consider both paths before making our decision and we respect anyone who faces the same.
If you are reading this and are on the outside watching a family with a disabled child decide whether or not to welcome a new family member, be supportive. Offer an opinion only if you know the situation is dire or if the family asks your opinion. If you are a family member or friend of a strong family who decides having a baby is a good choice for them, don’t be the gray cloud lingering over the parent’s joy. Chances are, that disabled boy or girl will be a pretty awesome big brother or sister and those babies you aren’t sure about will grow up to be tolerant and loving children because of those special circumstances. There is a lot of love in a big family, especially in a big, special needs family. If you have been told that having another child is not the best choice for a special needs family, offer the same amount of support and understanding. Be a comfort if needed. Sometimes deciding to stop having children is a difficult choice and if circumstances were different, the family would love to grow their family. These parents have plenty of variables that weighed in on a their choice. It may not be the choice they envisioned but it is the best choice for them and their special needs child.
In the end, there is no cookie cutter decision that suits every family. There will always be strong opinions on the subject but families have to decide what is best for them. Bringing a child into the world after a special needs child can have good and bad points but it is a choice parents need to consider carefully. Chances are, if another child is announced in joy or a decision has been made to stop having children, they have thought about all the possibilities and it’s best to share in the joy and/or offer your support and leave the criticism for another subject.
*d*
Reply by ~L~
I know I am guilty of the knee-jerk negative reaction and I know that you know that I apologized because after I thought about it, knew I’d hurt your feelings with my thoughtlessness. Not all people are willing to see something from someone else’s perspective but I always try to make sure I at least give it a shot. I didn’t immediately realize that I wasn’t considering it from your angle.
And you couldn’t be more right about the benefits and I know you would never need a lecture about the hardships of adding another child to a special needs family. If everyone had a disabled sibling to grow up with, the world would probably be an exponentially better place instead of the judgmental, intolerant place it can often be.
Your kids are loved immensely, taught well, and being brought up in such a way that they will be good human beings. To me, that’s what really matters.
Parenthood: when the phrase “showering with a buddy” takes on an entirely different meaning.
I’ve been up since 4AM. My husband gets up that early to go to work and I don’t know how he’s still standing at 9PM. My allergies have been nasty this winter. It probably has something to do with the house being all shut up and there being an extra cat (one of my worst triggers) here with Granny. So, I was awakened several times last night with that annoying little tickly cough and finally jarred completely awake at 4.
I’ve had allergies as long as I can remember and if you suffer too, you know the struggle is real. No, really. It sucks. Try going anywhere and staying overnight with your friends in a hotel. When you wake up in the morning and you’re hacking phlegm all the way up from your toes in that super echoy bathroom making your friends swear a 65-year-old lounge singer who’s smoked her whole life sneaked into the room sometime in the night and is using the bathroom. Like nature? Not since I’m allergic to air. Even though I have an admiration and respect for the flora and fauna that grace this planet, I catch myself leering at the fields of corn, soybeans, wheat, flowers…well, you get the idea. I love animals but when I look at them, all I see is the near future consisting of a box of tissues and itchy eyes. I think a combo of being a cleaner and allergic to everything makes me see things like intricate, ornate woodwork, ledges along high ceilings, or lots of knickknacks as an evil conspirator with dust. It also makes me dumb. Or just very unlucky.
I’m really good at cleaning so it only makes sense that my body would react to the activity like it was trying to put out a fire with my draining nose. It’s a cruel joke, in my opinion. But it doesn’t stop me from cleaning. If anything, I clean harder. Most of the places I clean I’ve been doing for long enough that the dust is under control. However, as I’ve mentioned before, I’ve faced a problematic job since the end of last summer. With three people and five large breed dogs in the house, the dust is never under control. It’s dust chaos. If I were to try and remove it from every surface, I’d be there the rest of my life because as soon as I got through the house, which is over 3000 square feet, I’d have to start over again. The dust settles so quickly that each week, it’s like I never dusted at all. With my OCD, the part of cleaning that is so satisfying is seeing the difference I make. It makes my mind happy and all the physical work worth it. I see a sliver of it when I’m done for the day, but I know it will only last a matter of hours and that almost hurts. This is just proof that my love for cleaning is a mental disorder.
So, I decided to quit. I need the money but as I’ve mentioned in the post Open Doors and Benadryl , it’s not worth it. I’ve also lost numerous Fridays of possible productivity because I simply am too sick to get off the couch. The allergic reaction from being exposed to the dust and dog hair lasts into the night and often leaves me feeling horrible the following morning. I’m tired of losing time because of it. It would be one thing if I felt like I made a difference but I don’t. Not only is the dust always back, my hard work goes unacknowledged and even disrespected at times. It wasn’t until the day I decided to quit the first time (I got a temp position and thought I could quit cleaning), that I was told that I was doing a good job. I don’t expect to hear it every time I clean, but I need to know that I am meeting expectations. It’s necessary to know what I need to do better. I don’t like taking people’s money and not giving them what they pay for. It also lets me know that what I’m doing is helping them, and that’s the core of why I do what I do. I’ve had more than one occurrence of the family walking right over my wet floors as I mop. In the beginning, things were picked up so I could do my job, but as time went on, less and less was put away, causing me double the work in the same time frame. I’ve never gotten out in the agreed upon 4 hours. It was always 20-45 minutes longer and that’s time I was never paid for. I could’ve said something, but I was afraid to lose the job by asking for more money. Now, the money has become a secondary issue to my health.
Two more weeks, and I can walk away. I’ll be devoting my free time slot to my writing and my new job. Both of which give me more validation and respect. I wish the family the best and hope that they might realize they need more than a weekly cleaning lady. They need a full-time housekeeper. And that definitely isn’t me.
~L~
My husband and I call our disabled child the “Sour Patch Kid.” If you have seen the commericals, you will know why. The slogan for the candy is, “sweet on one side, sour on the other” and their commercials usually show one of the little candy kids getting into trouble followed by a cute hug or something similar. I believe my son has studied these commercials in depth so he can perfect the art of the dual personality.
Typically he saves his sour behavior for home. From the time he started early education (at 4 months – he’s been working at it a long time) he was often praised for his good behavior while at school. My earliest memory of his “patchy” behavior began in the first year of early intervention. One of the biggest issues I saw at home would be him beating his head on the floor. I would take him to class and discuss the matter with the therapy staff and they could not believe he would exhibit that behavior. He would continue to do exceptionally at school and when we got home, he would be at it again. Even as he got older, he would have the staff wrapped around his finger and again when he got home, he’d do something like whack me. We have discipline in place and he sometimes ends up in time-out frequently. Most of the time it helps to curb his behavioral problems but he is continually testing the water with me. Today for example, we were waiting for his bus and it was running late. He was waiting inside dressed in his outerwear. I know it can be hard for him to understand why he has to wear it when he feels like he is going nowhere. He had taken off his gloves numerous times, threw his hat, jumped on his sister and other little things to show his displeasure of having to feel like a penguin. I sat him in time-out twice and the last time he sat he was working at taking his gloves off again. I reminded him that I wanted the gloves on his hands and he needed to behave. (I should mention the bus was a half-hour late). He didn’t like the whole morning and head-butted me in the face. I have a high tolerance for all kinds of ill behavior but getting hit in the face in any capacity is my least favorite. He got more time on the timer for hitting his mom. Shortly after, the bus finally arrived. He gets to the bus and out comes his sweet side. “Sigh.” Fast forward to this afternoon, the bus pulls up and he is happily calling for me. He waves goodbye to his friends and jumps in excitement as the bus pulls away. On the way back to the front door, he whacks me. “Really, little dude?”
This behavior has baffled us since he started showing signs of behavioral issues. We were assured it is normal but no one has any real advice. They refer to the period of time before the kids are ill behaved at school as a honeymoon phase because they eventually start the same problems at school. I am thankful that has not been the case with my little guy. He is still just as sweet as can be while he is at school and much more rotten for me. It is sad because I often feel like everyone else gets the best of him. The most frustrating thing is hearing from family how well he behaved he was until we walked in the door. That comment happens a lot and we always have the same answer as to why it happens. “We don’t know. We are just as lost as you.” We have no answers, just theories.
On top of trying to unravel his medical issues, we have the behavioral problems as the cherry on top. It’s daunting. Some days I feel like he is in time out three times more than the other children, but we have decided to be consistent as possible and require him to follow the same rules as the other children. Although he is allowed an additional warning or redirection of behavior. Nonetheless, he requires and demands a lot of attention, sometimes using the sweet and cuddly side or the sour side. I prefer the cuddly side and no matter his mood, I try to sneak a hug and kiss in, even if he doesn’t like it.
He recently started objecting to everything that happens around him. The staff at school have been trying to teach him how to use his voice to ask someone to stop bothering him (an issue because he is in a specialized classroom with other special needs children and he does get hit). That is all he does at home now. He understands the words, just not when he should use them.
I hug him. “Stop!”
I tell him, “I love you.”
“Quit it!”
One of the other kids sit next to him. “Knock it off, okay?!”
The baby cries. “Stop it, baby!”
He is learning what they are teaching very well. I just wish I could interact with him with less yelling.
My theory – he knows home as his soft place to fall. He is comfortable here and he knows he can take his frustrations to me, or slap them on me, whatever works. He has a gap of cognitive development that has slowed his language and prevents him from being able to communicate how he feels or what he wants. If I tell him that he can’t throw a ball in the house, I could explain why but he doesn’t understand. He has bad days where he is more tired or weak than usual and he is unable to convey that to me. He has no way of understanding why he feels that way. He has to be frustrated so he takes it out on the one person with whom he feels the most comfortable, me (or his dad when he’s home). I am stern with him and I have yelled. Every scream, hit, head-butt, and slap I take chips away at me. It is a crash course in patience every day.
Today when he came home, he crawled in his beanbag chair, covered up and fell asleep before I had time to ask about his day. It happens a lot. He comes home from school and crashes. Today he had a seizure at school so when he got here, maybe that smack was his way of telling me about that unpleasant event and how it bothered him or made him tired. He comes home and he feels like he can be himself and isn’t that what we all want? I don’t like his ill behavior and we will continue to work on it but I know it’s something we just have to deal with. Maybe I will get lucky and he will let me off with just a “You be nice, Mom,” as he pulls away from another one of my attempts to hug him. I will take what I can get and readily volunteer to be his safety net. Tonight he slept through the noise, dinner, baths and craziness of our evenings. It breaks my heart. His disease steals so much from him. It steals time with him away from me. My time with my little buddy is precious. People close to our family forget how sick he is. If he seems or looks okay than they think he is okay. The truth is, he has more going on than most people have to encounter in a lifetime and does pretty awesome. I wish more people would look past the sour patch and remember there is a little boy inside missing out on so much at the hands of his disease. I know I’d take any additional time with him I could get, sour patch and all.
*d*
It’s hard to believe any of us ever catch on to the English language. It has a multitude of words with multiple meanings. For example, two of the many meanings of the word “trip” is journey and misstep. How do my children ever decipher what I mean if I were to ask, “Do you want to take a trip?” How do they know I am not getting ready to come knock them over? Or why are they not equally as confused after hearing ‘tennis match’? Is it a stick to burn a tennis racquet? Maybe a date between two tennis players? It is the frequent use of these words in real life that help us understand how we intend to use them. When that fails, out come the kid’s typical one hundred questions. Experience and knowledge help decipher the true meaning behind our words.
Words are very powerful. When the meaning behind a statement is misunderstood, it can cause havoc. When a statement is taken out of context, the same mess can occur. Then the problem would no longer lie with the person behind the words, rather with those who hear them. I get rather disgruntled when something I say is misconstrued or taken out of context so I try to make what I share verbally clear. That can be hard for a shy individual such as myself. I have to sometimes think very hard to make simple conversation, let alone a complex conversation that could change the way someone views me. Miscommunication can be a hard pill to swallow, or do I mean a pill that’s hard to swallow….. “Geesh.”
The only way we will ever know what others are trying to say is to ask questions and be knowledgeable. My biggest pet peeve is social media. There is no filter for the mess spread through social media. It is a great place to take one sentence of an entire forum and twist it to confirm the end of the world. People read, comment, or forward without finding out if there is truth behind what they are reading or sharing. I can laugh and pass off a good part of this, but when it comes down to respecting others, everyone should make an effort to find the facts and speak the truth. Maybe I am barking up the wrong tree, so to speak. Gossip isn’t a new problem and it has always spread like wildfire, long before the internet. Is it more important to form an opinion of someone based on what you want to believe about them or what you know? I know the easy answer, but what is the right one?
The solution is respect and love for eachother. Friendships should be based on what is inside and love above all. I may share my personal opinions on life with those around me but I do not anticipate them to change and follow my beliefs anymore than they can anticipate me to conform to theirs. It is mutual respect. Remember, when all else fails, the best advice is: BE KIND. Kindness goes a long way and it requires little or no understanding of another person’s beliefs so pass it on. It’s a shame when we miss out on the wonderful diversity of the human existance based on misinformation.
*d*
Beautiful is the view from rose colored glasses. The dreamy spectacles enchant the lackluster world. Nothing can spoil the view when the world is tinted in the hue of rose. Storms roll in and candy colored drops fall from the sky. Just open your arms wide to receive the gifts imparted from a world radiating a floral glow. All have worn them and all have felt immune to the world. The newly in love, the couple having their first child, or maybe newly acquired wealth. While in this transient state, nothing else matters. No words or advice can penetrate the feeling. I was there many times. It felt glorious and no one could change me. All was right with the world and I had all the answers. I only wanted to do as I wished and no one could challenge my flawed beliefs.
Time still passes when in possession of new and pretty things. The dust from the journey starts to tarnish the pretty rose glass, a few stumbles toss and scratch them, and over time, they aren’t as nice as they once were. Some people rigorously try to replace the feeling with a number of different things. Yet, time wears down beauty and life refuses to stay roseate. So when it comes, maybe it’s best to celebrate and relish in the feeling. Everyone has their time when the sun shines a little brighter, the road traveled is smooth, and the air smells as fresh as a new spring day. At this time, some plead for time to crawl. Or even stop. These are the moments that make up the most perfect of memories. Remembering can flood you with emotions and feelings just as fresh as when it happened. When things don’t seem as splendid, these are the best moments to remember. They act as a glimmer of light when it has been too long since life looked rosy. I often like to remember a time before diagnoses, the days my children were born, or when my husband and I fell in love.
Looking back can certainly swell my heart with joy but it can also remind me of my own ignorance. I don’t like parts of the person I once was. There was a time I was so high on this feeling that I thought I had it all. I had all the answers and I didn’t need anyone’s help. I was ignorant to the people closest to me and that had to change. The only unacceptable ignorance is the ignorance that refuses to be changed and I was full of it. I thought I knew more than people with a lifetime of experience, I had strong opinions of many things with no personal experience , and the only things that mattered were the ones that surrounded my life. I allowed myself to boast but was unable to look past the end of my nose. I had fallen from my perch many times and usually walked away unscathed. I had to take a few big falls before I finally broke. There were times I couldn’t get up. I spent a lot of time kneeling at my broken life, trying to put the pieces back together. Some parts of it are still not put together.
A lot of people pass along wisdom during times of tribulation. Many people quote the saying, “God doesn’t give you more than you can handle.” The more hardships I experience, the less I like this quote. I know I have been given more than I have been able to handle. This quote has made me feel inadequate. Where was this strength equal to the turmoil I was facing? Why was it so hard to pick up the pieces of my rose colored life? I was broken down until I was folded over with my face resting on my dusty hands. There was nothing left but to lay down my ignorance and plead for help. I think we will all be given more than we can handle alone. There are times we must silence ourselves, kneel down, and ask for help. I have replaced this saying with one of my own, “God will give you more than you can handle because breaking you down is the only way He can get you to kneel.”
In those most dismal moments you can choose to desperately hold on to the beauty that is slipping away or you can kneel. You can cling to the ignorance that refuses to change or give up your turn peering through the glass and find something deeper. The only way I was going to learn was to be broken. I wasn’t changing any other way. Something terrible would occur, I would reflect and realize I needed to change. Time would pass and I began to forget. I would forget the gifts suffering allowed me and went back to my old ways. I was stubborn and it took a lot to change me. I only wanted to be happy when I was peering through the rose colored glasses. It was easier that way. These days, I try to find happiness even when I am broken and dirty from the journey. I admit, it can sometimes take effort searching for a reason to be happy. That’s when relying on those reaching out to help and something bigger than yourself is worth it.
The world can give us many reasons to lose hope. Several years ago I wanted to change everything in my life. I wanted to move, find another job, and start over. I had lost hope in other people. My plans changed when my son was diagnosed. Those same people I thought I lost hope in began to reach out to my family. I found the love and compassion I had feared was lost in this world and it took my own devastation to see it. Disparity is not the end of happiness but possibly the best way to find it in the most unlikely way.
*d*
CrossRoadTrippers 