I've been trying to figure out what I will post on my blog for Autism Awareness month. I've been looking through my books and online sources and kept thinking I should start with red flags. However, if you want to find the red flags, you can google it and...BAM! I decided to post about all the little things I noticed about Harrison as a toddler (before he was even 2) that were not typical but not taken seriously by medical professionals.
He played by himself for hours. As a toddler, this is not typical. Most 18-24 month old toddlers do not sit quietly and play for that long. We had no idea that this wasn't typical as he was our first.
He developed very early language skills. This alone is not a red flag. However, grouped with the others, it is.
He was very cautious and didn't take risks. He never climbed or jumped off of things. He was always so careful before he tried anything new. His developmental milestones were early or textbook, but once he developed all of his basic milestones, he became cautious.
He memorized books and movies. Again, this is probably not a red flag by itself. There were certain movies he could quote most scenes and a few books he knew from memory. We just thought he was a genius. He certainly is very smart, but it all makes sense now.
He lined up toys and sorted them by type. I used to joke he was very OCD in his playing. He went through a major "Cars" phase and would group all of his Lightning McQueens by color. He would proudly show us his masterpieces after spending an hour organizing them.
His play consisted of quoting movies or mimicking movie scenes. I used to tell Chris that I was worried he didn't have an imagination because he was regurgitating what he had just watched. He didn't have much interest in his toys that weren't in one of his favorite movies or TV shows (think Toy Story, Cars, Thomas the Tank Engine, Monsters Inc)
He became increasingly less affectionate. Not so much with me, but with others. He no longer liked hugs or kisses from other people. They made him very uncomfortable.
He developed food texture issues. He was a great eater until he approached two. Then suddenly he had a reason he didn't want to eat things and would have massive meltdowns if you tried to get him to eat his old favorites.
He hated change in routine. Most children thrive with a routine, but generally are pretty adaptable. He was not. It would throw him off course and rock his world.
The tantrums and meltdowns were exhausting and more frequent. All kids have tantrums and all kids will throw some pretty ugly ones in their life time. There is not much that is comparable to a spectrum child meltdown.
He developed sleep issues. He was always a good sleeper as a baby. He was the baby who slept 8 hour stretches when he was a few months old. When he weaned around 14 months, he went from 10 hours to 12 hours. He started having a lot of problems going to sleep and staying asleep.
He preferred adults over children. He would gladly hang out with adults in a room full of kids. Especially elderly men.
He carried heavy things all of the time. He loved lifting heavy things and dragging them around the house. This is actually satisfying the need for sensory input.
He didn't play with other children very well. He didn't initiate much play and didn't get along with other kids. He just preferred to play alone.
He started becoming afraid of loud noises. He used to love tractor rides with my dad and suddenly he hated the engine noise. Loud noises became scary. Movies in a theater were a nightmare.
He developed obsessions. Very obvious obsessions. His earliest obsessions were Toy Story, Thomas, and Cars. He LOVED them. He watched them all of the time. Played with his toys. Wore the clothes. Memorized the lines. He lived and breathed them.
He was very grumpy and argumentative. Basically he was a grumpy old man trapped inside of a little boy's body. He was the happiest baby ever, so this was a personality shift.
He was a potty training nightmare. He was 4 years old before he was trained. It was an awful time that I do not like to reflect upon at all.
He was very quirky.
Let me reiterate that these qualities alone do not mean you have a child on the spectrum. Maybe even a few of them mean nothing. This is by no means an official checklist. These are things I noticed about him as a toddler that I felt were not typical.
My biggest piece of advice. TRUST YOUR INSTINCT! Seriously. God gives parents (especially mamas) a neat gift of intuitiveness with your children. If you suspect something is different, mention it. Don't blow it off. Don't think it will go away. It doesn't.
Another big piece of advice. Most pediatricians don't know what to look for with ASD/sensory stuff. In fact, if you have a high functioning child or one with just sensory issues, your child will likely not get diagnosed until they are older. Typically this happens in school when their differences become more obvious (like Harrison). Here is what that means. Your child has missed on years of beneficial therapies that could have helped him/her. I try not to beat myself up over not getting Harrison diagnosed until over 4 years later. My biggest regret is that fact he did not have early intervention that could have really helped him. Seriously...an early diagnosis is so much better in the long run. For us, it changed the way he parent him (mostly) and for the better.
My door is open for encouragement, advice, and prayers. Please contact me if you need any of these.
Showing posts with label aspie. Show all posts
Showing posts with label aspie. Show all posts
Monday, April 01, 2013
Tuesday, May 15, 2012
I don't even know what to title this post
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 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.
Wednesday, March 07, 2012
2 months later
Just over 2 months ago is when we got the news. The news that our son has Asperger's Syndrome. Honestly, it is hard to believe it has been 2 months. I'm going to be brutally honest in this blog post. Just warning you now.
Just over 2 months I started the grieving process for a son that I would never have. You see, when I was pregnant with him, I had all of these dreams. Dreams of an all-American rough and tumble boy with rugged good looks. He would give me bear hugs and wrestle with his Daddy. He would have lots of friends. And then after he was born and became a toddler, I knew how smart he was. I starting dreaming of additional things...like how he was going to change the world with his intelligence. I wasn't sure how, but I dreamed of many scenarios. And in case you haven't figured it out, I'm quite the dreamer, probably to a fault.
As he continued to grow and get older, I realized how different he was. It worried me. I told our pediatrician at one of his well checks (either 18 or 24 months) that I thought he had autism. I was assured that he was just a genius and quirky. As he got older, social things weren't as easy for him. He didn't have many friends. Although he was very kind hearted, he was also quite contrary and didn't get along very well with many people. The tantrums and meltdowns got worse. I felt like a failure as a mother. I mentioned it to a few pediatricians (we had some insurance changes and had to hop around for a bit) and they all seemed to believe it was due discipline techniques. We tried everything. Nothing really consistently worked. Even through all of this, my dream of how he was going to be always stayed in the back of my mind.
Fast forward to when he began kindergarten. Early on in kindergarten, we were asked to write a letter about our child so that the teacher could understand and get to know our child better. Mine was like a novella. I didn't realize it at the time, but I'm almost certain most people might have had one or two paragraphs. I just couldn't sum him up in a brief note. He has always been complex. He had a great year. Made lots of friends. I was even told he was a social butterfly. I felt maybe he was growing into his quirks. Things were getting better. My dreams started returning.
Then as he entered his first grade year, things got worse. He was angry all of the time. So much so, that we were really concerned. He started some really unusual behaviors that seemed to interfere with his daily behavior. He didn't have many friends and felt that kids were teasing him or didn't like him. He began to cry every morning before school. Things weren't right. I knew in my heart that something was indeed different.
So at the end of the year, we had some testing done. The results were given to us on January 4, 2012.. All of my dreams went crashing down. I will never forget that day. Never. It was a relief and it was paralyzing all at the same time. And I grieved. And grieved some more. Because this ideal of this "perfect" son was not him. It was never going to be him. He simply isn't that child. It is going to take behavioral and occupational therapy to help him through his struggles. But Asperger's isn't just about struggles. It is so much more than that. And it doesn't mean that he isn't awesome. He just isn't going to be that all-American boy.
But here is the thing. I'm okay with that. Chris and I aren't those people. We are weird and quirky and have made a happy little home in all of our weirdness. We will never be that all-American family with a white picket fence and 2.5 kids. Quite frankly, I'm 100% okay with it. Harrison is perfect for our family. He is going to do great things one day and more than likely because he has Asperger's. Because of the focus and drive he has on things that interest him, he will absolutely do great things. Because he has a gift that not many people have. So this thing. This syndrome. This diagnosis. It is what makes my son who he is. He is awesome and I love him. And he may never be great at small talk. He may never have many friends. But he makes me laugh. He is so funny, without even trying. And when he hugs me, or sits in my lap, I realize what a big deal it is. He amazes me every day. And some days there is a whole lot of ugly stuff to get through, but it is worth it. And every day the grieving of this "perfect" son consumes me a little less and I learn to embrace and love my sweet and special son just as he is.
Just over 2 months I started the grieving process for a son that I would never have. You see, when I was pregnant with him, I had all of these dreams. Dreams of an all-American rough and tumble boy with rugged good looks. He would give me bear hugs and wrestle with his Daddy. He would have lots of friends. And then after he was born and became a toddler, I knew how smart he was. I starting dreaming of additional things...like how he was going to change the world with his intelligence. I wasn't sure how, but I dreamed of many scenarios. And in case you haven't figured it out, I'm quite the dreamer, probably to a fault.
As he continued to grow and get older, I realized how different he was. It worried me. I told our pediatrician at one of his well checks (either 18 or 24 months) that I thought he had autism. I was assured that he was just a genius and quirky. As he got older, social things weren't as easy for him. He didn't have many friends. Although he was very kind hearted, he was also quite contrary and didn't get along very well with many people. The tantrums and meltdowns got worse. I felt like a failure as a mother. I mentioned it to a few pediatricians (we had some insurance changes and had to hop around for a bit) and they all seemed to believe it was due discipline techniques. We tried everything. Nothing really consistently worked. Even through all of this, my dream of how he was going to be always stayed in the back of my mind.
Fast forward to when he began kindergarten. Early on in kindergarten, we were asked to write a letter about our child so that the teacher could understand and get to know our child better. Mine was like a novella. I didn't realize it at the time, but I'm almost certain most people might have had one or two paragraphs. I just couldn't sum him up in a brief note. He has always been complex. He had a great year. Made lots of friends. I was even told he was a social butterfly. I felt maybe he was growing into his quirks. Things were getting better. My dreams started returning.
Then as he entered his first grade year, things got worse. He was angry all of the time. So much so, that we were really concerned. He started some really unusual behaviors that seemed to interfere with his daily behavior. He didn't have many friends and felt that kids were teasing him or didn't like him. He began to cry every morning before school. Things weren't right. I knew in my heart that something was indeed different.
So at the end of the year, we had some testing done. The results were given to us on January 4, 2012.. All of my dreams went crashing down. I will never forget that day. Never. It was a relief and it was paralyzing all at the same time. And I grieved. And grieved some more. Because this ideal of this "perfect" son was not him. It was never going to be him. He simply isn't that child. It is going to take behavioral and occupational therapy to help him through his struggles. But Asperger's isn't just about struggles. It is so much more than that. And it doesn't mean that he isn't awesome. He just isn't going to be that all-American boy.
But here is the thing. I'm okay with that. Chris and I aren't those people. We are weird and quirky and have made a happy little home in all of our weirdness. We will never be that all-American family with a white picket fence and 2.5 kids. Quite frankly, I'm 100% okay with it. Harrison is perfect for our family. He is going to do great things one day and more than likely because he has Asperger's. Because of the focus and drive he has on things that interest him, he will absolutely do great things. Because he has a gift that not many people have. So this thing. This syndrome. This diagnosis. It is what makes my son who he is. He is awesome and I love him. And he may never be great at small talk. He may never have many friends. But he makes me laugh. He is so funny, without even trying. And when he hugs me, or sits in my lap, I realize what a big deal it is. He amazes me every day. And some days there is a whole lot of ugly stuff to get through, but it is worth it. And every day the grieving of this "perfect" son consumes me a little less and I learn to embrace and love my sweet and special son just as he is.
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