This morning I get a call shortly after 8:00. Today is the last day of school and the kids were allowed to bring handheld gaming devices. Harrison left his DS at home. Just as he was calling, I saw it sitting on the couch and I knew it wasn't good. Poor little guy was very upset and his teacher told him that if he knew my number, he could call me. I told him that I'd be there no later than 9:00 with his DS because I had to get all of us dressed (today was a pj's in the van morning).
Well, I am a hot mess and my hair is a little crazy, so I grabbed my pink Boston Red Sox hat to cover my bad hair. I don't actually wear hats very often because my head is huge and they drive me crazy. Sam couldn't get over seeing me in a hat. He sees Daddy wear one all of the time, but not Mama. So, of course, he needed a hat.
Well, Kadie can't be left out, but she only has hats for His glurry. If you have no idea what I'm talking about, here is a quick reference. hats Our precious family friend/little sister/big sister figure, Victoria, introduced us to Shirley Q Liquor last summer. My life has really never been the same.
She really looks like she is posing for glamor photo shoot. Not sure what is up with that. She really just needs a matching feather boa and a dark velour backdrop.
Then, of course, Sam needs a hat for His glurry. This boy is all kinds of ridiculous.
So, today in the Holbrook house, it is all about the hats!
Oh, and we got Harrison's DS to him at 9:00 on the dot and he couldn't be happier!
First of all, I feel the need to publicly thank every single one of you who has reached out to me since my last blog post. I am simply overwhelmed at all of the kind and encouraging words. It feels absolutely wonderful knowing that so many people are praying for us. Let me also say, I was away at my mom's today and haven't had a chance to return any phone calls.
I will be really honest. I did not want to make my post public. I wanted to journal my thoughts to help me process things and leave it at that. I can't explain it in any other way - the Holy Spirit nudged me to post it publicly. I really struggled with it. I wanted to go back and edit it. My fear was that people would really see how weak I truly am. My other fear was that people would think I was just having a big ol' pity party for myself.
Let me expound on those 2 fears a bit. I know that I am weak and I know that I am nothing without Christ. But lately, I feel absolutely beaten down and it is hard to share that with the world (the world being my blog viewers). It isn't that I try to put on a front, but I just don't think the world really needs to know how helpless and weak I really feel. As far as the pity party - my post wasn't to try to make people say..."Oh, those poor Holbrooks. They are just pitiful." My reason for posting was to give others a glimpse of Aspergers, and so that everyone knows specifically how they can pray for us. We are both just feeling worn down and in desperate need of prayers and encouragement.
As far as providing a glimpse of Aspergers - I feel very led to raise awareness. Shows like the "Big Bang Theory" and "Parenthood" have definitely introduced it into more homes. Chances are, many of us know an Aspie. They are cool people. They look just like the rest of us. You can't really tell a thing is different by looking at them. But there is a lot that goes on that people don't realize. I think as a mom to an Aspie, my son deserves to have his mom be an advocate for helping the world understand him and his Aspie peers just a little better.
But let me give credit where ALL credit is due. Since my blog post, I've been flooded with calls, texts, facebook messages, and comments of support. So basically, a blog post that I didn't even want to share and wrestled with all day, has done several things. It has our village of prayer warriors praying for us. I have received personal stories from people that have touched me deeply. People who are going through similar things. People who are struggling, but not necessarily in the same areas. People have taken the time in their busy days to reach out to us, and that means so much. People whom I've never physically met and may not ever be able to meet are reaching out and telling me that I've inspired them or helped them through a troubling time. That my friends is God. I took a chance and let the Holy Spirit lead me to post it, and nothing but goodness has come from it. It is amazing how God reveals Himself to us in so many ways. If my posting a personal blog about my struggles puts God in one person's life, it was absolutely worth it. My biggest prayer and most sincere wish is that God will use my struggles and my life to glorify Him. To minister to others. I mean, if we can't use the crappy stuff in our life to make something beautiful, then what is the point? I'm so incredibly humbled that my journey has done that for others. If you see any strength, any beauty, or anything inspiring coming from me or my family, it is God. Nothing but God. God is beauty. God is grace. God is strength. God is love. God is peace.
My heart is filled with love. I'm overwhelmed with peace. I can't thank you enough for showing support. It means more than you will ever know.
We are about 4 1/2 months into our journey with Aspergers. I have so much on my mind. I don't want my blog to only be about parenting a child with AS, but this is my blog and I generally write about what is on my mind. This is always on my mind.
I took a small break from reading books about it. Honestly, they made me feel hopeless and overwhelmed. I needed a break. Plus, I live with it everyday - so reading about it almost made it unbearable.
From what I understand about Aspergers, it will improve as he gets older as long as we give him the tools to understand his symptoms. So, it isn't so much that these symptoms just go away, but he will know how to manage them more appropriately. I feel like we are noticing more things because of A) our increased awareness of Aspergers and B) his own personal maturation, which is amplifying some of his symptoms. I also understand that stress can cause regression, which for Harrison would mean his obsessions get more intense and his impulses get harder for him to manage.
I'm back to my AS reading and I'm reading a really helpful book on parenting an AS child with sense of humor, because lets face it - you must keep your sense of humor. This book has really helped me feel a sense of relief. I'm not going to lie. I feel like a terrible mother on a pretty regular basis. Harrison has never been easy, so even before we were given his diagnosis, we did things differently with him. But what I'm realizing is that I do not really give myself any grace with parenting, especially with him. That has to stop. Now, let me be clear. I'm not saying that parenting a non-special needs child is easy. So please don't think that if you have only children without special needs, I think your life is a cake walk. That is not what I'm saying. What I'm finally now able to admit is that parenting a child on the spectrum is down right hard. It is exhausting. It is stressful. It may be unrewarding for long stretches of time. Parenting a child on the spectrum is different. I know. I have three children and I parent them very differently. Even though Kadie is not a special needs child, she is high needs (some might say high maintenance). She is very sensitive and isn't really easy, but it is different than it is with H. Sam, as of now, is easy. Now, his insatiable need to explore and climb is exhausting, but it is different. I want to stress that I think parenting is hard for anyone. It is challenging. I am just finally ready to admit to the world, I'm struggling. I feel like I'm sinking and I need love and support.
I'd like to give everyone a sneak peek into a stressful morning we had yesterday. I apologize for any grammatical errors. This is going to be long.
Home:
Monday mornings are our Occupational Therapy days. We go to Siskins every Monday at 8:30 and we have for about 6 weeks now. We don't take H to school prior to OT because it would be pointless, so Monday mornings are a little more relaxed for us because we have 30 extra minutes. Yesterday, we had a hard time getting moving because we went to bed later due to Mother's Day festivities. I'm not a morning person at all. It takes several cups of coffee to make me approachable. Harrison's biggest struggles are in the mornings. (For those of you who don't know, a common trait among Aspies is saying whatever is on their mind with no filter). He is downright rude and mean in the morning. He says what many of us think, but would never really say. I generally just tell him not to talk to anyone because he simply cannot be tactful in the morning. It causes fights and it is just easier that way. Even me knowing about his lack of filter doesn't make it easy. Let's face it. Words hurt. Kadie wakes up pretty chatty. She is annoying to me, and I don't have AS. So, I realize that she is almost intolerable to him. He just wants to be left alone and she just wants to talk to him. It honestly just isn't fair to either of them and it simply doesn't work. He doesn't have much tolerance for her, but mornings allow no wiggle room. My main job in the morning is to keep them from killing each other and to keep H on task for getting ready. Sam usually wakes up with a cheerful disposition, but yesterday he was GRUMPY. To make matters worse, I could not get him to wake, so I had to dress him on the fly and pack a to-go breakfast for him. There was no time for him to play or "hatch". Harrison was overtired on top of recovering from being sick (that should ready Aspie qualities are exacerbated due to stress of being tired & sick) Every word that had come from his mouth was pretty upsetting. I almost forgot to mention that I never had a chance to pour myself a cup of coffee. I did manage to prepare one for the road. I also forgot to mention that I woke up with a sore throat and itchy eyes, so I was already at a disadvantage.
The Drive:
So, we load into the van and we are already 5 minutes behind. Harrison and Kadie were arguing and Sam was fussing. I inform my older children that they are not to speak on our ride to Siskins. I explain to them I needed to make a phone call to let Siskins know we were running behind and they needed to take a break from talking to each other because they were not being nice and it was upsetting Sam. We had barely backed out of the driveway before Harrison was yelling to me that he really needed to tell me something important. I'm on hold to Siskins. I motion to him to be quiet. He keeps yelling. I lose my call because I accidentally hit "end". Try this again. Finally got a voicemail, so I leave a message that we are going to be slightly late with a yelling 7 year old and fussing toddler as my background music. I acknowledge H, so he will tell me his important issue. He goes on a rant about how he is angry with his teacher because of toy policy in the classroom, and he has been angry with her since October. (Side note: if an Aspie has a rant, they can't just let it go. They will not stop until they get it off their chest) I explain to him that it is acceptable to get angry but not to stay angry at someone. I briefly explain that harboring anger in our hearts is not healthy and makes God sad. I offer to pray with him about forgiveness and anger. He tells me that he thinks he will forgive everyone and that maybe we can pray later tonight. We ride the rest of the way in silence.
Siskins:
We get to Siskins and fortunately our being late didn't cause any issues. The waiting room was unusually packed. The thing about the waiting room at Siskins is that you have a whole myriad of special needs children in the waiting room. Kadie is very curious about why children are making unusual noises, or why they don't want to to play with her, or don't know how to play with her. I finally coerce her to read a book with me so that she will stop getting upset about all of the kids. Meanwhile, a lady leaves a cup of coffee unattended and Sam notices it instantly. He spills a large McDonald's coffee that was almost full all over the floor. The office had no towels and told us that we just needed to use paper towels from the restroom. This wouldn't have been a problem, except the only paper towel machine was the one that had a sensor and only spits out a small square of non-absorbent paper towel each time. Seriously? It literally took me and the other mom about 6 trips each with a giant handful of paper towels to wipe up the coffee. The whole time I'm wiping up this mess and running in and out of the restroom, Kadie is under my feet trying to help, and Sam is screaming because I took the coffee away from him. Then Harrison walks out with his OT and she is explaining the day's session and what he needs to work on. She also tells me that she thinks he needs to be evaluated by a pediatric PT because of some concerns she has about his lower extremities. We leave and I'm nearly in tears because I'm overwhelmed. I'm overwhelmed because of the morning we've had thus far. Add into that the added stress of one more treatment/therapy/evaluation Harrison needs that we probably can't afford. This was a wonderful year for our FSA to be canceled. So far we are looking at core strengthening therapy for H (taekwondo & stroking lessons - both of which are not covered under our insurance), an evaluation by a developmental vision specialist, and now a physical therapy evaluation. We haven't even started counseling/behavioral therapy for him yet.
The Parking Lot:
So, I'm forgetting God is with me. I'm forgetting that God is Peace and takes care of me. I'm brimming with tears walking down a sidewalk on Carter Street carrying Sam, while my older kids start running. They are heading straight for a busy area with cars. I'm pretty far behind them at this point and yelling for them to stop. Oh, I forgot to mention, it was raining and we didn't have an umbrella with us. After what seemed liked an eternity, they both finally stop running. So I am scolding them both for running away from me on a busy street & parking lot and them giving them directions on not stepping in puddles. Of course, they do not listen to me about the puddles and Kadie's boots are soaked. She doesn't deal well with uncomfortable clothing. She was upset about her boots. I tell her she isn't allowed to remove them until we get H to school, which is literally about 2-3 minutes away. Sam is fussing again and H is in his "we have to hurry to get to school because I hate being tardy" mode. I get the two younger children fastened in their car seats and get in my seat. My van won't start. What? This goes on for about 5 minutes, as I'm checking everything I know to check. This is the type of thing Harrison doesn't handle well. He realizes our car isn't starting and starts having a meltdown. I call my husband and we try to troubleshoot it. I'm trying my best to stay calm so my children don't feed off my emotions. We think it is a fuse or the starter. I call my mother-in-law to rescue us. She can come but is about 10-15 minutes away and had to quickly get ready. For at least half of our wait for her to arrive, H is having a monumental meltdown. He hates being tardy. He doesn't want to miss lunch. He doesn't want to miss work stations. There is no comforting him. Sometimes despite your best efforts, you cannot reason with an Aspie child. You just need to let them do their thing. I tried everything. Sweet Kadie was trying also. Sam was just crying because it was stressful. My mother-in-law arrives and we decided it would be easiest to put the booster in her car while she sits with the younger two kids in my van, so I can get him to school as soon as possible. She has a new car that she's had for just over a week (this is not irrelevant).
On the way to school/School:
The whole way to school Harrison insisted that we calculate the amount of hours she has had her new car. Converting days to hours is one of his latest obsessions. The thing about Aspies...sometimes their obsessions are endearing and fun. Normally I don't mind playing along, but I had no brain power in my head left to figure out how many hours my mother-in-law has had her new car. Math is not my strong suit. I was stressed. I was over it. I did NOT want to do math in my head. I just wanted to drop him off at school and figure out what we were going to do about my van. He was relentless. Needless to say in that 3 minute trip, we calculated the approximate amount of hours she has owned her new car and somehow managed to talk about ninjas (another obsession). We get into the office and he immediately tells the office staff:
"We're late. We're always late on Monday's. I have occupational therapy. But today after my therapy, our van wouldn't start. My note is only for occupational therapy because I have it every Monday. Mom always checks my pockets on Monday's. She doesn't check them on other days. I like to sneak toys to school on Monday's. So she checks my pockets. I hope I didn't miss lunch."
I'm sorry it took me so long to describe my morning. Kudos to you if you actually got through all of it. I realize that everyone has bad mornings. I'm not saying I'm unique in that. I'm just trying to post a glimpse of how having a child with Aspergers compounds a stressful morning into a monumentally stressful morning. This is where I'm having to teach myself it is okay to give myself grace. Six months ago, I would have beaten myself up over what I could have done differently. Now, that I'm understanding what makes H tick, I understand how an out of routine morning can set him off pace for the whole day. You see, our whole life has been like that with him. I just always thought he was an inflexible little old man and I could teach him to be more adaptable. I thought I was a terrible parent because of his inflexibility and my lack of ability to shape him towards flexibility. Now I realize it is just who he is. Life throws us curve balls. I'm not exactly the most flexible person either. Curve balls are hard for me. I try to put myself in his shoes. Curve balls knock my little guy completely off course.
Another reality in our life. Raising neurotypical children with your child on the spectrum. Neurotypical is a term you see the minute your child is diagnosed with a spectrum disorder to describe typically developing children/adults. Normal is not really an acceptable term to use for typical kids, because that implies that something is wrong with your child on the spectrum...something wrong rather than just different. How do you raise your children in the same home? How do you parent them all the way they need to be parented? It seems as if you are catering to the needs your AS child and completely negating the needs of your other children. One of the biggest hurdles we face right now is understanding H's sensory issues and what causes him to stim or meltdown. A big part of that is him dealing with his siblings. We've determined it is pretty important for him to always have his own room so that he can have a refuge. It isn't fair to make your other children stop talking, playing, dancing, or singing when your AS child can't handle it. But it isn't fair to him either. What do you do? It is hard. Then you have the struggle of giving your AS child all of the therapy and treatment he needs to have the best chances of functioning. Right now, financially, it is stressful and depressing. Harrison needs and will probably need a lot of therapy over the next several years. We can't even do it all for him right now. We have to pick and choose. There is a lot of guilt over that. Then you look at trying to just give your neurotypical children some extra curricular activities. When what seems like an extra curricular activity for H is actually therapeutic, it is hard to explain to your daughter why she isn't taking ballet lessons right now. It just doesn't seem fair to her. Thankfully the younger two are young and they don't really realize all of this right now.
On top of this stress, I have the question looming in my head - should I go back to work? Would it make things easier? We still would have two in daycare, so essentially I'm working to pay for daycare with very little left over. And what is left over probably isn't enough to justify the stress of me working full time. At least with me staying home, I'm here for sick kids. I'm here for the doctor's appointments. I'm here to cook the majority of the meals. I'm here to do the housework and cleaning (um, not my strongest area). There are a lot of expenses you incur when both parents are working that are convenience expenses or work related expenses. Eating out more often, gas expenses, work clothes, more doctor visits for sick kids due to daycare exposure, work related expenses..the list is actually pretty lengthy and we really considered all aspects when we made the decision to become a stay at home mom. I already feel like homeschooling H is where God is leading us and actually peace about the decision, so ultimately I know going back to work isn't an option, but sometimes it does seem like it would make things easier.
I feel like I get burned out more than my other parent friends. I feel like there is something wrong with me. Then I start reading this book I referred to earlier. The guy talks about how exhausting it is to raise a child with AS. He talks about how it is important to give yourself breaks because you are dealing with something that most parents don't have to deal with. I need to be able to escape the Aspie word on occasion and it is hard to do so. Do you know how relieved that made me feel? I feel such extreme guilt for feeling like I need a break. Quite frankly, with our current situation, neither one of us gets too many breaks. We have an almost non existent budget for childcare. Not only do we have a child with AS, but we have three children. We rarely go on dates. We rarely take time alone. It is tough and probably one of the biggest challenges that parents of children on the spectrum face. We can't just leave our children with anyone. Kids on the spectrum aren't comfortable with everyone. Plus, not everyone wants to deal with the possibility of a meltdown. If you aren't used to them, they can be scary. It is understandable. There was a point in my life I probably wouldn't have been comfortable watching a child that might have a meltdown. I get it. Plus I don't like asking for anything because I don't want to inconvenience others, so I don't. It makes me feel guilty. I know we have people that will help us and I need to be more willing to utilize those resources. I know that sometimes allowing someone to give me or Chris a break is actually blessing them, because it is something they are able to do for us. I need to get over my inability to let others help.
I think ultimately what has been troubling me the most, is the fact I can't "fix" my son. As someone who feels very deeply and I read people so well that I almost take on their mood, it is hard for me to fathom my son not being able to pick up on these social cues. How do I teach him? Can he ever be taught? Does it really matter? How do you teach your child not to sound like an ass when talking to someone? It really tears me up inside. I love him so much. He is such an awesome little guy. I know that people who take the time to get to know him will love him and accept him ,and that does give me comfort, but he won't always have that bubble. It is just scary sometimes.
I also realize that just 4 1/2 months into our journey with AS is still relatively short in the grand scheme of life. We are still processing it. We are still coming to terms with it. Each month brings new challenges and emotions. I'm also the type of person who really has to analyze and process things internally. It took me a good year if not longer to grieve the loss of my father, so I know I just need to give myself time.
This blog post was probably more of a journal entry for me. I realize that it is hard to follow and I only publish it because if my feelings can help someone, I want them to help someone. There are still emotions floating around inside of me that I can't quite identify yet. I did come across a quote that really reflects how I feel and I know beyond a shadow of a doubt why God called me to start Stephen Ministry training.
For those of you who have gotten this far, I thank you. I ask that you cover my family in prayer. If you would like specific prayer needs, I'm going to list them for you.
*Pray that we can keep a strong marriage. Pray that we make quality time for each other and not get bogged down in the messiness of life and forget our love for each other.
*Pray that we can parent each of our children how they need to be parented.
*Pray that we can use our life journey to minister to others.
*Pray for our finances. Pray that we can give Harrison the treatment he needs. Pray for discernment so that we can give him what he needs the most at the right time.
*Pray that our other children do not feel resentment or abnormal jealousy toward Harrison and that we can work together as a supportive family unit.
*Pray for peace for our family.
*Pray that we will utilize our village of support.
*Pray that keep Christ the center of our home and hearts.
I haven't really written about breastfeeding in awhile. It has been on my mind, but I've been a busy bee lately. However, this cover of TIME has caused a lot of controversy and deserves some attention.
http://www.time.com/time/covers/0,16641,20120521,00.html
If you know me, then you know my stance on breastfeeding. You likely know my stance on extending breastfeeding. If you don't - I'm for it.
Why am I for it? It is normal. It is healthy. It is a big part of the reason our breasts are there. God gave us breasts to nourish and comfort our children. There is nothing perverse or weird about it. Our society has sexualized breasts to the extent where we feel that breastfeeding beyond a certain age is somehow emotionally traumatizing our children. I'm not saying breasts can't be and aren't sexual, but I am saying that they are so much more than that.
I've written about it before, but I will share again just a few of the great benefits of breastfeeding and extended breastfeeding.
* Breast milk increases in fat after the first year. Do you have a picky or busy toddler? All the more reason to nurse him/her.
*Breastfed children are generally healthier.
*There are countless immune factors that are well worth researching!
*Reduces the risk of several cancers for mom (breast, uterine, ovarian, & endometrial).
*Breastmilk contains HAMLET (a substance which kills cancer)
There are many more...google it!
However, I have a big problem with this photo on the cover of time. I realize they are using this picture for shock value, and I'm certain it will accomplish just that! The problem I have with this photo is that it really doesn't help normalize extended breastfeeding. Yes, my toddler does stand from time to time when he nurses. I do prefer to teach my children nursing manners, because quite frankly, it can hurt if they stand or get too acrobatic. This picture will likely continue to ostracize those of us who are extended nursers. I really wished they had used one of these photos instead.
I will forever treasure the breastfeeding bond that I shared with my children. My hope is that this article will help open the eyes of our culture to see breastfeeding as a normal and healthy way of life. I hope that we can encourage nursing moms and make them feel confident that they are doing something truly wonderful for their babies. It isn't weird. It is normal.
Sources:
http://kellymom.com/ages/older-infant/ebf-benefits/#nutrition
http://www.kathydettwyler.org/dettwyler.html
http://www.lalecheleague.org/nb/nbextended.html
http://healthland.time.com/2012/02/29/why-pediatricians-say-breast-feeding-is-about-public-health-not-just-lifestyle/
http://www.drmomma.org/2010/04/hamlet-substance-in-breastmilk-kills.html
http://www.hygeiababy.com/blog/?p=459
