Tag: Mom

Hoping For What?

AC1 Comment

As humans, I think we are designed to look for the light at the end of the tunnel. We gear up all the energy that we have, get a running start, and do everything we can to get to that light. But what happens when that light is not as visible? What happens when there doesn’t seem to be an end in sight?

I’ve been having meeting after meeting lately while we prepare to transition E out of Early Intervention and into the next phase of services. Part of this is a Future Planning Meeting, where we talk about what my hopes and goals are for E. I remember the meeting last year. I was optimistic. I had heard so many success stories about kids who after a year of therapy, their progress really took off. The speech kicked into place and things just got easier. When E’s third birthday rolled around, I remembered that meeting and I felt a loss all over again. A loss for all the hopes that I had for him in the past year. My original hopes were adjusted when he was diagnosed, and I had acquired new hopes. E actually has progressed. He has made a lot of changes. But as any parent of a special needs child knows, with progress, comes new difficulties. E becomes more aware of his environment. E becomes more anxious and sensitive to those things around him. E becomes more fearful. E becomes destructive as he learns to explore his environment.

As he has learned to say certain words and babble I find myself so excited for him. So excited that he is learning how to form sounds, and say words that are functional. E hears a door open somewhere in the world; on the tv, upstairs, in the neighbors house (That E Boy has supersonic hearing when he wants to). He says “door opennnn”…. I get so excited that he is aware enough to notice that the door is open and to say that phrase. I start to think, “Wow he is going to talk. I am so happy for him! Things are going to get easier.” But then that excitement fades as it stays the same. The same standstill. Last June, he imitated his first word, I was elated. A year later he does not imitate that word anymore. He does not imitate more words. He imitates a different word. I am ready for the progress, but it seems to just be parallel progress.

Preparing for my next Future Planning Meeting, I thought, “What are my hopes”? The meeting came around, and they asked the questions. “What is E doing differently this year? What has he overcome? What are his strengths”, and lastly, “What are your hopes for him?” Adjusting what I want, I told them I don’t have specific goals. My hope? For him to be happy.

Having a child with autism, it often seems suffocating. I get to a breaking point where it seems I can not stretch anymore, but then against all odds, I do.

Today, I heard a crash from the basement. I went down to find E shattering an heirloom. Picking it up again and again. Smashing it into thousands of pieces. The one thing I had that had been passed onto me from that grandparent. My heart broke. I was devastated. I can tolerate him pouring fruit loops all over the floor. I can tolerate him ripping a key off of my keyboard. I can fix those things. What I can’t handle? Him destroying something so irreplaceable and special to me.

Hope can be dangerous when you are dealing with autism. Every child is so different and I have no idea what to hope for. I hope that I can handle the next year. I hope that I can be a good parent. I don’t hope for things to get easier, and I don’t hope for progress. I want it. But if I hope for it, I don’t think I can handle the pain from that being crushed. Again and again.

Will He Talk?

AC1 Comment

Will my child ever talk? It’s a question that I’ve obsessed over for the last year. At the beginning, I thought about it compulsively. I would ask anybody and everybody. I wanted somebody to tell me that yes, he would talk.

We talk a lot in his appointments and therapies about progress. About E’s individual progress. That his timetables are different. That I can’t compare him to others at his age, but instead compare him to himself several months ago. Example. Several months ago, he was only babbling in vowel sounds, now he has been able to add consonants to his babbles. At the beginning, I tried to be patient with his progress. With his progress in OT I was patient, but with speech.. not so much. I always wanted to know if certain progressions meant that he would start talking in x amount of time. ‘If he is making those movements with his tongue, did that mean that he would for sure be talking by 3?’ I had to know when he would talk.

Several months back, I had just finished touring an Autism Center for E. I asked my question to the director. ‘Will he talk? Have you had children like E come through who end up with functional speech by Kindergarten?’ Her answer was the same as always. ‘You know autism is a spectrum. You know every child is different.’ Frustrated by the lack of knowing once again, I started thinking about why E talking was so important to me. What did it mean to me? What is my job as a mother? To make sure my child is safe, loved, and happy. So what if he doesn’t talk? What does that mean? Does that mean he can’t be happy? Does that mean he can’t be loved? No. I realized that me wanting E to talk, was me hanging on to the last shred of hope and normalcy for E. If he talked, somehow his autism wasn’t as serious. He could be one of those miracle stories that you hear about. Who seemingly grow up with no traces of autism left. In that moment, E’s autism finally sank it. With it came complete love and acceptance for my boy and what he was capable of. As long he was happy, that’s all I realized I really cared about. The fear over that question finally melted away. Whether or not he talked stopped mattering as much.

Do I still want him to talk? Yes, but now the reason behind it is different. I want him to talk for what it will do for him. I want him to be able to express himself. I want him to be less frustrated.

There are still days I ask that question and still days I get frustrated. But, now they are fewer and far between.

Queen A

AC1 Comment

A is the boss of the house. Or so she thinks. Sometimes A is feeling very impressed with something she has done and might remark, “Wasn’t that a very six-years-old way that I got the cheese out of the fridge?” If I agree and say, yes it was in fact a very six-years-old way to get the cheese, she is instilled with just enough confidence to keep going. She then informs me about all the things that four-years-olds, five-years-olds and six-years-olds like to do with their spare time. “Sometimes four-years-olds really like to get cheese out of the fridge because they are feeling grown up, but four-years-olds also really like to get the mail. AND they like to unlock the door when the babysitter comes. They get very upset when their moms do it for them.” When she says this she tries to align her gaze with mine. Almost as if her general assessment of four-years-olds is directed towards me.

When we were moving last winter and people were coming to look at our house, A would try to take direction of the tour. She had seen enough Fixer Uppers that she felt like she knew her way around tour-guiding houses. “And this…” she would say, “is the room where Mom puts all the things she doesn’t want to put away.” She would then quickly transition to the Master and and all it’s dazzling features. Including the accompanying “ensuite”. Let me tell you this. There was nothing ensuite about that bathroom. The house was 1400 sq. ft, built in the fifty’s, and probably updated once in the seventy’s. It worked for our needs, but it definitely did not have an ensuite.

A likes to talk a lot and fortunately for her, unfortunately for me since I am the topic of it, she has plenty of opportunities to exercise her skill. At E’s Early Intervention Playgroup she told his teachers, “My mom doesn’t have time to play with me ever so she hired a babysitter to do it instead.” This is accompanied by A putting her positive spin on the situation. “Isn’t that so nice of her?” I told them that I recently hired a babysitter to help out and when we got home I went over with A all the times that day that I had played with her.

My mother-in-law has been visiting this week, which has been wonderful to have the help. She has been getting the kids for me in the morning so that I can sleep in. On the first morning that she got up with them, I overheard A giving her the rundown of our household. “Every morning I wake up first, then I go into E’s room and I play with him. Then I have to take care of him. I feed him breakfast and make sure he is safe. I help out with my brother A LOT. Mommy really likes to sleep. Sometimes she sleeps so late that we miss lunch.” She probably would have kept incriminating me, but I ran out of my bedroom faster than I have ever gotten up in the morning and interjected. I let my mother-in-law know that A sometimes goes in first to get E while I get dressed and plays with him in his room. The breakfast that she gets him consists of old Easter, Halloween, or Christmas Candy that she hides throughout the house. Lastly, A mixes up her meals and often mistakes breakfast for lunch. I am grateful for a mother-in-law who knows me well and knows that I am quite involved with my children and would never leave my “four-years-old” to care for my highly active two-year-old with autism.

I realize how easily my praise for A goes to her head. My telling her that she does such a good job helping with her brother and that I appreciate her help, translates in her mind to pretty much her running the house and being a super awesome four-year-old who takes care of her brother all the time. My sleep deprived pleas to her at four am to go back to bed and that I really like my sleep translates to me liking my sleep so much that I sleep through not one, but two important meals.

A is very precocious and it’s cute, but it more often borders on her thinking she is actually in charge. What is it with kids? You give them a compliment and they internalize it forever. I remember as a kid, someone said I had a good voice and I started practicing everyday in my room dreaming of the day that I would be discovered and turned into a famous pop star. After all, someone did say I had a good voice. Why wouldn’t that happen?

We hate to discourage A from being confident, but sometimes we do need to put a dent in her massive ego. We remind her that we are the parents and she is the child. She responds with, “Okay Mom”, or “Okay Dad”, and runs off. We know that deep down she still thinks that she runs the place. The next person who comes over she will be telling all about how Daddy loves video games so much he should have a video game themed birthday party and Mommy feeds us Diet Coke allllll the time.

Adapting.

AC1 Comment

Change is hard for me. I am very dependent on my routine and a deviation from it can be quite difficult. I like to have my routine, my schedule, my bearings. When I go on vacation, I take certain things with me and set up as soon as I get to my destination. I take my pillow always. I have my necessities by my bed. My book, my reading lamp, my lotion, my charger, etc. These things help me to adapt better. I guess it’s like a kid taking their teddy bear along with them. It’s easier to cope if you have something special to you. My aversion to change is a control thing. I am a control freak. I like things a certain way.

I like the things that change brings, it is just hard initially to adapt.

Becoming a mom was like this for me. I didn’t want things to change drastically. I wanted to still be able to do the spontaneous, shallow things that brought me so much pleasure-Girls trips, getting my nails done, going to concerts, going shopping. I wasn’t sure how motherhood would change this. On Facebook I would see posts complaining from moms that they hadn’t showered for a week. They hadn’t done anything for themselves in months. They never slept. I didn’t want that. I wanted to retain my interests, my hygiene, my spontaneity, but I wanted to be a good mom too.

I am a very intense person. When I like something, I do it all the way. I find a shirt that I like and I buy it in every color. I find a book that I like and I do nothing else but read until it’s finished. Then I read every single book by that author. Sometimes I get so into something that I neglect everyone around me. I get obsessed with something and that is all that I can think about. I feel that I don’t have control over the level of intensity with my passions.

My biggest fear with motherhood was that I would get too sucked into my personal things and ignore my kids. I wanted to be myself and a good mom. I just didn’t know these two things could coexist from what I had seen. I couldn’t risk my intensity taking over and my future kids suffering because of it.

A was born. After the initial adjustment and shock wore off from learning how to be a mom, recovering from PPD, and readjusting my life to having a newborn, I  didn’t restart the things that I used to enjoy so much. Reading, Writing, Yoga, Sewing were all neglected. The rare time when I would start to do things for myself I felt like I was neglecting my baby. I felt like if A was awake then I needed to be 100 percent invested in her. At the time I didn’t realize I was doing this. I was handling things the only way I knew how- by intensely getting involved in one thing and neglecting everything else.

As time went on, I started to feel bored. And dull. I would go on a walks with A, go to the splash pad with her, go to different baby activities, the park. I still felt flat. And just a general discontent.

I googled “stay-at-home mom boredom.” Guess what? No responses. Seriously? I couldn’t be the only bored stay-at-home mom. The search responses that kind of matched it were ideas of things do to help my child not be bored. My child was an infant. She was definitely not bored. Subsequent searches gave me ideas on how to be an even better stay-at-home mom. The way to be an even better mom, it seemed, was to invest even more of myself into my child.

I remember walking into the living room one evening around this time. My husband was watching A. He was sitting in a chair, A propped up in his lap, and he was playing Call of Duty like nothing had changed. I realized that he was still exactly the same. He was a great dad but he still had his interests. How could I do this too? I lost my spark and I wanted to get it back.

I read a book. “Bringing up Bebe.” It is a book about an American’s experience living in France and the differences in parenting between the two cultures. As I read the book, I saw my own childhood in it. My parents still retained themselves while raising me and my sisters. I had an excellent childhood even though my parents had their own things going on. Some of my fondest memories are activities where I am helping my parents. Gardening, cooking, errands. I loved helping my parents with their routines and doing things together.

I started to try this with my own child. I started to do the things I normally would do, but with A. I cooked dinner while she was awake- not napping. I would, depending on her age at the time, incorporate her into it, or entertain her. I started taking a shower when she was awake. To achieve this, I put her in her crib with toys and books. I read books while she was playing with her toys. I started doing my everyday living, but with her. Having her help actually made it more enjoyable a lot of the time. Doing this, I surprisingly ended up having more time to play with her individually. I was happy because I was able to meet my own needs. And my being happy made me a better mom. I became more confident. I made more friends. I took her to the park. I thought up fun ideas to do. It was a chain effect. It kept building upon itself.

Finding myself again was not overnight. It was a gradual process. It was when A hit her 18 month mark that I felt like my core pieces had returned back.

Every day is not perfect. I still struggle at times to find a balance between myself and motherhood. Some days I am embarrassing amounts of lazy and ignore my children completely. Other times I am struggling to have one minute to myself. But overall, I feel like I have successfully navigated my way through the uncertainties of motherhood. I’ve made a safe place for myself and found joy in both my children’s and my own individualities.