A little bit lonely...

It's a little bit of a lonely road you walk down when you have children with special needs (especially those that manifest behaviorally). There is the judgement, those who don't understand, the stares, the assumptions about bad parenting...Tonight Wendel was talking about a co-worker of his who lives in Maricopa with his family. They invited us to dinner a couple of years ago. Although I was looking forward to it, I completely spaced it when the day came and missed the dinner entirely. I didn't realize it until over and hour after we were supposed to be there. Becky had messaged me through Facebook but I didn't receive FB notifications on my phone at that time. I didn't have her phone number so I had Wendel call Ross (her husband) once I realized our oversight. She was not happy. I sent her several messages and she didn't reply for a couple of days. After profusely apologizing, she finally responded and basically said she went through a lot of effort and it was frustrating that we didn't show up. I get that. I would be a little frustrated too. We invited them over a couple of weeks later. And after that, nothing. I mentioned to Wendel tonight (at his mention of Ross) how badly I feel about that dinner and how Becky and I never clicked after that but that it could've been different. He said, "Let's face it, we have challenging kids. We're not going to have many friends. They don't get it." And aside from our oversight with dinner that night, I could feel the difference between our kids and theirs. I think maybe it was more of us offending them than the differences in our kids that drove a wedge between us but it is still an issue to consider and one that definitely weighs heavily on my heart. I can think of friendships that have been strained and even severed due to "differences in parenting styles" or how challenging our children can be. I could include example after example of one friend, in particular, whom I was close to when Oliver was young. (We aren't really friends anymore. Barely acquaintances.) But I won't go down that road. Not tonight anyway.

Sweet Boy

My thoughts are turned to Josh again tonight. He had a preschool field trip today to Shamrock Farms. He really enjoyed it but lately he's been telling me, "Everyone hates me," including several times today. I usually say, "Well, the good news is, that isn't true." Today he told me, "My family loves me but everyone else hates me." Today at the field trip, we all rode a tram as we toured the farm. A bunch of the pre school kids wanted to sit on the same row on the tram, saying they were "best friends." Josh and I took our seats in front of them. I told him, "You can sit up here in front of your friends." One little girl, Bailee, was sitting next to him but then moved back with the other kids at their invitation. They didn't invite Josh or say they wanted him by them. Bailee ended up moving back to our row at the insistence of the tour guide, because there wasn't room on the other row, but it wasn't because she wanted to hang out with Josh. I could tell they view him differently, maybe not consciously but at last subconsciously.

This evening Josh and Norah were helping me make dinner. She moved over to his chair when he walked into the other room for a little bit and when he came back he pushed her right off and yelled at her. I put him in time out for that and he refused to stay so after a couple of chances, I told him he had to go to bed early. This put him into a mood that is not easily changed. Wendel had to work late on a house he's flipping and I was going to go to a girl's night out with friends but I knew this mood he was in wasn't going to change so I had my babysitter come here instead and be with the babies and Norah while I got Josh to bed (which took an hour and a half). We eventually had a good talk about how he could use his words to express his frustration with Norah instead of pushing and yelling. Sometimes he says things to me like, "I love you mom. What would I ever do without you? How could I live without you?" And tonight I had the thought of what will he do when I'm gone, this sweet boy of mine who will hardly open up to anyone else. And that breaks my heart.

Missing my grandparents

Wendel blessed our sweet boys at church today. They were both given beautiful blessings and it was a nice day with family. I will share more another time but wanted to quickly write that this morning as I was getting ready, I was thinking about Grandma and Grandpa Roberts (especially Grandma) and missing them. I thought of how much I would love to sit down and talk with them and how I missed her matter of fact way of expressing herself, how she had a story for everything and loved to talk, how she called me "Ash," how she never gave up on my dad, how she would have loved to attend the babies' blessings today if possible...and I felt an overwhelming feeling of missing her but also feeling like she and Grandpa weren't far away today. It brought tears to my eyes. Before leaving for the church, I slipped on a ring that used to be hers that I picked out when I was in high school. I remember her saying, "You want that ring? It's just a cheap thing," or something like that. But I liked it and I like that it reminds me of her. The veil felt a little bit thiner today.

It is almost midnight now so I will continue writing about the boys' blessings another time.

Feeling Overwhelmed

I'm sitting here on the couch at 9:52 on a Friday evening. My heart is heavy and I feel overwhelmed with Oliver's ODD diagnosis. He was diagnosed with Oppositional Defiant Disorder and Anxiety about a year ago by a Developmental Pediatrician at The Melmed Center. He is an amazing kid. He is sweet with his baby brothers, kind to animals, fun to be around on his good days, loves to be silly, will often do kind things for others, he has friends and has a best friend whom he loves, he is good at math and interested in figuring out how things work...but he can turn in an instant, raging in anger, destroying things, difficulty controlling his emotions, lying, screaming, throwing, punching, blaming, negative self talk, playing the victim...I think the hardest part is the lack of understanding from pretty much everyone. People don't understand his struggles to control what come more naturally to other children. They don't understand that it's not a "parenting" or "discipline" issue. That we're not bad, inconsistent parents who let our kid walk all over us. They don't get that every single thing we do or say is met with resistance and that you absolutely have to choose your battles and let some things go and that is is extremely exhausting. They don't get the pain our son goes through as he is yelling and crying, "I'm just the kid who destroys things!" "I'm the worst kid in my family!" "All I do is lie!" It is heartbreaking.

I try so hard to be patient with him. I try to understand and connect, research and apply, apologize and love. So often I feel that I'm failing him.

Tonight I had a couple of thoughts. First, when I went into his room to check on him after he fell asleep, with tears running down my face, I had the thought that I just need to love him. When he is angry, show him an outpouring of unconditional love. Easier said than done.

Then I came downstairs and stood in our kitchen and felt so alone. I am part of a couple of support groups on Facebook for parents of ODD kids and it helps to know there are others out there. But here in the non-virtual world, I feel pretty isolated. I thought of our Savior and how he sacrificed so much to be able to succor us and mourn with us in times of heartache. I then thought about how Oliver will one day be made whole when he is resurrected, an extraordinary gift from our Savior. He conquered death, as will we. This gives me hope for my son, hope that these challenges will not be forever for him.

But I also want him to find joy and hope in this life. I want him to know how much I love him, even though it's not always easy for us to connect. I want him to know I will fight for him and do all I can to ease these challenges. Sometimes I am impatient and get frustrated (tonight he told me I'm like Ms. Adamick, his English teacher whom he doesn't like because she's not very nice). But I am a constant in his life and that will never change.

Josh & Oliver after the Primary Program this year. October 2017

Promptings

I wanted to quickly share a prompting I had the other day. I was feeling overwhelmed – with our cluttered house, the kids, responsibilities…everything. I walked into the pantry to empty the trash and I felt the Spirit wash over me. I had the thought: “Keep doing the best you can.” It was very comforting and helped me keep pushing through the overwhelming feeling.

I am incredibly grateful for the gift of the Holy Ghost. His companionship is one of the greatest blessings I have known . In a confusing world, it is comforting to know I have His companionship to guide, comfort, confirm truth and warn me when needed.  It is something I try not to take advantage of because I know my life would be very different without this gift.

I am recommitting to recording promptings, big or small.

Joshua

Joshua has been especially on my heart and mind lately. We recently have wondered if Josh could have Asperger’s Syndrome. We have noticed some things in him that, isolated, could be anything but looking at them all together look a lot like Asperger’s (or high functioning Autism, as we’ve learned Asperger’s is no longer considered a diagnosis in the DSM 5). It was Wendel who first suspected it, just last month, and at first I was taken back and couldn’t believe Josh could possibly be in this category. But after reading about it, I am now almost certain he is. In the past, I have at times felt somewhat grateful that we didn’t have an autistic child, only because I feared what I did not know and it seemed overwhelming.

Lately I have been thinking about how our children were sent to our family with purpose, with their specific strengths, weaknesses, challenges, trials and gifts. And how we, as parents, can use our specific strengths and gifts to assist these children in their journey in mortality. It is by design. It is part of our Heavenly Father’s plan. I look at our children’s challenges (Oliver’s ODD and Anxiety diagnoses, Eleanor’s medical issues, Joshua’s Anxiety diagnosis and possible ASD (Autism Spectrum Disorder) and I try to view these as challenges I can help my children with rather than feeling sorry for ourselves to struggle with such challenges. Autism, something I once feared, is now something I want to learn as much as I can about so I can help my son. The other night I talked with my friend, Mindy, on the phone for a long time (her son, Carlos, is Oliver’s best friend and her daughter, Andrea, has been diagnosed with high functioning Autism). She was so helpful with resources and support for me. She told me about her experiences and warned me that I will have to jump through several hoops and to be ready to fight for Josh. After I got off of the phone with her, I went up to bed but stopped by Joshua’s room first. It was dark and he was asleep. With tears running down my face, I whispered, “I will fight for you, Buddy. I won’t ever give up on you.”

Today Josh had an Autism Diagnostic Observation Schedule (ADOS) at his Pediatrican’s Offic. It’s a pre-screening test to determine if he needs a full Autism Evaluation. We won’t have results for a couple of weeks.

Today Josh told me, “I love you, Mom. You’re the best mom ever to me.” That melted my heart.

The Feelings of My Heart

I am an introvert and therefore have always turned to writing as a way to express my feelings (I have 65+ journals plus several blogs). I also like talking with close friends but many of the thoughts I plan to share here are those I feel are difficult to share with some of my friends and even some family members. I often feel judged by other moms; judged for the way my parenting is perceived based on our children’s behaviors. In fact, I have never put so much effort, love and sacrifice into anything in my life as I have my role of being a mother and nothing is more hurtful than being judged for not parenting my children as others would, or so they think, not knowing what it is really like to raise a child who has been diagnosed with Oppositional Defiant Disorder and Anxiety (age 7.5), another child who has been diagnosed with Anxiety and likely is autistic (diagnosis pending) (age 4.5), another child who was born with an abnormality (Microphthalmia: one eye stopped developing in utero and is half the size of the other), which mandated several surgeries on her right eye, including a lensectomy at two months old, wearing a hard contact lens, and daily patching, in addition to seeing many specialists (age 2.5), in addition to infant twins. I am sharing this information to complain but rather to paint the picture of survival mode at this point in our lives. Our house is usually a mess (not just a little messy, but cluttered and looks like a tornado hit and and I would be embarrassed if anyone dropped by unannounced kind of messy) and stress levels are often high. I believe we are blessed with gifts to help us with our personal trials. I have felt for some time that three of my gifts for this purpose are 1. A positive disposition 2. Faith 3. Determination Without these, I don’t know how I could keep going day after day without breaking down and wanting to give up.

But even with these gifts, I often feel the need to vent. I talk with Wendel a lot, and that is very helpful because he’s the only other person who really gets what it’s like to raise these amazing but often challenging children. But I also need to write it down to really process what I’m feeling and learning, so I can go back and read my thoughts and make connections. I tried keeping a handwritten “motherhood” journal but truthfully, I don’t have time to write in it during the day and at night, I’m just too tired so I write quickly and my handwriting gets worse and worse with every word and I feel rushed and like I can’t express myself completely. I like the idea of this private blog where I can share my thoughts, just for me.

I chose the title of this blog because I have always loved this quote by Harold B. Lee and have felt the truthfulness of it ring true over and over again. I know the work I do in our home with our children is of upmost importance. It was difficult to set aside my career as a social worker to stay home with our children but at the same time I value my role as a mother more than anything and want to be the one to raise and nurture our children on a daily basis. Make no mistake, though, it is definitely work. There are moments I love and I definitely would make the same choice over and over again, but it is challenging, to say the least. It’s definitely the most difficult thing I’ve ever done. I cry often. I pray a lot. I worry and wonder if we’re doing the best thing for each of our children in how we are raising them, teaching them, and especially disciplining them. The thing about survival mode is there isn’t a whole lot of time for contemplation because it really is putting out one fire after another all day long until they’re in bed and then we’re just so exhausted. But tonight, despite the exhaustion, I was determined to start this blog, which has been on my heart and mind for a while. This will be my safe place to share the feelings of my heart as I press forward in this great work of raising five beautiful children.