getting there

As you know last week started off with a bang!  It was one of those weeks I don’t want to repeat anytime soon!  If you read my last two blogs then you know Jake was a handful to put it mildly.  Tuesday and Wednesday were better days for Jake while in school until he came home sick from school Wednesday afternoon with a cold.  Poor kid was all stuffy and by Wednesday night he was running a fever.  This probably explains his sensory issues he had.  I am not 100% sure this is accurate but in the past right before Jake would get sick he would bounce off the walls, It explains a lot if I am right on this one.  If you think about it, if he is getting sick and his body is working to fight the illness everything else going on goes into overdrive which makes sense given that his sensory needs were at high levels.  It would also explain why I couldn’t give him enough sensory input to help meet those needs.  Really it is all to complex for me…it goes back to me trying to figure out what is going on and sometimes I just can’t.  And maybe it isn’t for me to figure out, maybe it is something I need to learn as Jake does.

The saving grace for the week was knowing I would get to spend Saturday with a group of long-time friends hanging out by the pool; I have known some of these ladies since I was in elementary school.  I kept repeating to myself, only 2 more days, only 1 more day etc.  It was so nice to leave the house on Saturday drive to a friend’s house alone, I didn’t have to hand Jake a drink or repeat for the millionth time where we were going.  Just the short ride helped me relax.  And then my friends and I just hung out by the pool, ate, talked and caught up on everything, ate, laughed and we ate some more.  When you have been friends with people as long as we have (at least 30+ years) it is easy to relax.  There is no fakery, we can all just be ourselves, share our struggles and celebrate our achievements without judgment.  When I say it was relaxing, it really is an understatement!  I kept my phone in my bag, I heard it ring at one point but just left it, I didn’t jump to see if maybe it was John needing something in regards to Jake.  I think I pulled my phone out only a few times during the 5 1/2 hours I was away!  And if I think about it that was one of the best feelings, letting go of that control thing I have in me to check in and make sure John and Jake are doing ok.  Of course John can take care of Jake, he knows what to do and I don’t give him enough credit at times and don’t let go enough to let John take charge (something I am and have been working on).  This morning I feel refreshed, content and most of all happy.  I am ready to start the day and I feel more energized to handle whatever it is that needs to be handled today.

When I first started this journey I remember therapists, friends, doctors and other mom’s I had met kept telling me to remember to take time for myself.  At the time I thought, okay I will but really didn’t understand how important it was at the time.  You see I had just started this journey and at that time Jake was 2 and I knew I needed to put myself last because I needed to get him help, I needed to spend time with Allie, spend time with John and well there was always something more important than me.  But you can only go at that pace for so long, a person needs to put themselves first every now and again because if you don’t you will become obsessed and it will eat away at you and honestly it leaves you feeling like you are alone in this journey whether it be the journey I am on or motherhood in general.  Now that Jake is in school more I am finding it much easier to take time out for myself.  I wish I had heeded the advice given to me earlier but at that time I honestly thought Jake needed me, which he did but what Jake, John, Allie and my friends were getting wasn’t me.  Well, it was but it was an exhausted, burnt out version of me.  It wasn’t fair to any of them and I was becoming resentful.  Not a pretty picture.  There are times I do have to force myself to do something for me but it is becoming easier.  I try to remember how it makes me feel to get away for a bit, I remember that I felt like I could do more and give a better version of myself when I took that time out for myself.  So it is getting easier and by taking time out for myself I am allowing John to take a more active role in working with Jake.  It is helping me relinquish this control feeling I have and that is a great feeling!!!!

If I could pass along anything I have learned over the past 2 and a half years to a new mother or a mother new to the autism journey is to take time out each week for you!!  You matter; I matter and we can’t do anything with no gas in the tank.  We need to refuel, it makes us go with a clearer head and enables us to take better care of our families and better care of ourselves!

PS  Another thing I am doing for myself is going to Florida on a girls trip in a few weeks!!  We started this trip about 20 years ago, I haven’t gone since I was pregnant with Jake which means the last time I went was 5 years ago.  I cannot wait!  I will sit on the beach with my phone in my bag and I will be able to fully appreciate the time I get to spend with my friends and appreciate this gift of being able to get away, relax and to take care of me!!!

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bring on the terrific tuesday….please!

Last night I was cranky to say the least, it was a HARD HARD manic-type Monday.  By 8 a.m. I wanted to hit the rewind button and start over.  I am pretty sure I am not the only one who felt or has felt this way…a friend said to me yesterday ‘why are Monday’s so hard?’  Jake had talked all weekend about going back to school.  I showed him on the calendar that we would go on Monday and how Saturday and Sunday were Jake and Mommy days.  Monday morning rolls around and I tell him it is Monday which means?  And he promptly said “SCHOOL”!  But then the “no’s” started shooting out of his mouth.  Me: Let’s eat breakfast; Jake: no, I want to play; Me: let’s go potty; Jake: no I want to play and it went on like that for a few more no’s which ended with him in time-out.  I gave him a bath to help soothe him as he was bouncing off the walls, I gave him deep pressure massage and apparently that wasn’t enough because he brought me his ‘big hug’ (compression vest) and said “put big hug on please”.  The ‘big hug’ is like a big hug, he is constantly feeling pressure to help alleviate some of his sensory needs.  Basically, it helps his body regulate and in turn helps him to calm down a bit and listen.  The day didn’t get much better going forward, at one point, while at school, he put himself in time-out because he didn’t want to clean up.  He hid under the table at some point because he didn’t want to meet his new physical therapist.  I picked him up from school where we went to spend the afternoon with his therapist’s and it was tough on all of them.  By the time we got home I was mentally exhausted and Jake was physically exhausted.  He sat with me for a bit and then was up and running.  John was trying to get Jake to do something, like pick up his toys, and told Jake he would get a time out if he didn’t help pick up his toys…Jake ended up with a time out.  During his time out he ran to John, squeezed him (something he NEVER does) and said “I sorry, daddy.  I didn’t mean to”.  This made us laugh but at the same time we could see this boy gets it; he gets it all!  During a meeting with his OT this afternoon she said this “Laurie, he is so much smarter than we ever thought he was.  He now knows how to use his voice to say the things that he hasn’t been able to before.  Now we take what we know and build on that.  We meet his sensory needs, correct his behaviors and it will all fall into place.  We just need to give it time, time for him to get used to his new routine.”  I said “he has been in school for two weeks so he shouldn’t he know his routine by now?”  What she said next is something I should already know…why didn’t I think of this?  She said “for typical children or adults it takes about 2 weeks to get used to the new routine but with children like Jake it takes him longer.”  Ummmm, yes!  I should have known this!!  It takes him so much longer to grasp concepts and this is one, like many others, that is going to take some time. It is hard for me at times to keep up with it all, my brain is constantly going, planning and anticipating and at those times what is obvious is what I can’t see.

Let’s hope for Terrific Tuesday 🙂

Sensory Processing Disorder

It is hard to believe we have been back to school for two weeks now, it seems like so much longer!  Overall Jake truly loves being back in school, he loves his teachers, friends and being back in a routine.  He has had some really good days and some not so good days which has led me to look at his sensory issues.  Jake has a hard time sitting still, following through with simple directions and general listening.  There is a fine line between behavior issues and sensory issues.  At times it is hard to differentiate between the two.  I am fortunate enough to have fabulous teachers that are able to see the differences and discipline appropriately.  Sensory issues are difficult and finding the right “fix” at the right time can be challenging at best! Jake has been diagnosed with Sensory Processing Disorder .

Sensory Processing Disorder (SPD, formerly known as “sensory integration dysfunction”) is a condition that exists when sensory signals don’t get organized into appropriate responses. Pioneering occupational therapist and neuroscientist A. Jean Ayres, PhD, likened SPD to a neurological “traffic jam” that prevents certain parts of the brain from receiving the information needed to interpret sensory information correctly. A person with SPD finds it difficult to process and act upon information received through the senses, which creates challenges in performing countless everyday tasks. Motor clumsiness, behavioral problems, anxiety, depression, school failure, and other impacts may result if the disorder is not treated effectively.  They may over-respond (avoider) and find clothing, physical contact, light, sound, food, or other sensory input unbearable. Or they may under-respond (seeker) and show little or no reaction, not even to pain or extreme hot and cold. A third option is sensory-motor problems, including weakness, clumsiness, awkwardness or delays in acquiring gross and/or fine motor skills.  Many parents have been blamed, told our kids need more discipline, or that they are “In need of a good spanking.”

Jake falls into all of these categories.  Here are some things a sensory Seeker is doing

Spinning; Climbing too high; Climbing everything; Crashing into things (people, furniture, walls); Mouthing/licking inedible things (furniture, toys, body); Chewing inedible things (clothing); Eating excessively; Constantly wrestling with siblings; Touching everything; Playing with food; Eating messily; Overstuffing their mouth; Eating spicy/hot foods; Under-responding to pain (‘shakes it off’ quickly); Dumping out toy bins just to look at everything; Engaging in excessive sensory play (mud, water, soap, etc.); Jumping; Pushing; Running barefoot; Chewing on their toothbrush; Not sitting still at their desk; Falling out of their chair for no apparent reason; Seeking loud noises (turns up TV, putting battery toys against ears, vacuum.); Failing to monitor their own volume (you constantly say, “Stop yelling!”); Smelling everything, even bad smells

The other side of this are the Sensory Avoiders; sensory avoiders are probably what comes to mind when people think of a child with sensory issues: The child with his hands over his ears. But, there is more to it than that.  These are children can have sensory challenges with even the basics in life: eating, dressing, bathing.   The sensations from day-to-day living can interrupt an avoider child’s functioning, and make it nearly impossible for them to learn or socialize appropriately.  Here are some things you might see an avoider doing:

Picky eater (prefers one texture or basic flavors); Covers ears at noise (hates vacuum, blender, hand dryers); Avoids touch (not a ‘huggy’ or ‘cuddly’ kid); Hates tags/seams in clothing; Won’t wear shoes (or prefers only one shoe type); Avoids messy activities (mud, sand); Avoids art activities like painting or play dough; Walks on toes; Doesn’t engage in playground activities (climbing, swinging, etc); Hates a wet/dirty diaper/underwear; Dislikes having people too close; Refuses to take a bath/shower or play in the sprinkler; Hates water on their face; Hates/Refuse to brush their teeth; Complains about smells; Complain that normal light is too bright (wanting to wear sunglasses); Over-responsive to pain (everything hurts!); Avoids/refuses stickers/fake tattoos

Sensory issues are on a continuum; some kids avoid nearly all sensory stimuli, and some kids seek excessive amounts of sensory stimuli. And many kids do a combination of both, depending on where their ‘arousal’ level — it is a constant balancing act to get the input just right.  Jake falls in the middle, there are times he is a seeker and other times an avoider.  Which makes it hard for me to know exactly what he needs at any given moment.  I am fortunate to have a fabulous OT; she has worked many years with children with sensory processing disorder.  We talk about different activities that we can to do for Jake to help relieve him of some of his sensory issues and she created a sensory diet for him which is basically activities we do with Jake every few hours to help “calm” his system down.  She explained it best when she said it is like an alarm clock going off in his body and he can’t shut it off.  He can hear it but doesn’t know what to do with the information and therefore cannot process what to do next.  Many kids with Autism have SPD, it is understandable because Autism is a neurological disorder, if your neuro isn’t completely functioning as it is supposed to everything else gets out of whack. This is one of the areas where we work diligently; there are many struggles and to say it is frustrating at times is an understatement.  The other day Jake has a particularly bad day at school, he couldn’t stay seated, he needed to keep moving, he told the teacher “no”, he did the opposite of what he knows he should do.  Jake’s teacher worked with him all day giving him the necessary sensory input, he had a time-out or two for constantly telling his teachers “no”.  By the time he got home from school he was exhausted.  He sat in my lap while I hugged and massaged him for 45 minutes to help his body and his mind calm down.  But this was not enough, I had him carrying two big containers of laundry detergent around, pushing his train table around the room, we went outside and just ran.  It all helped but still didn’t seem like enough…I texted Jake’s teacher and told her I felt lost.  This is how I feel much of the time when it comes to Jake; I see him struggling, I see him fighting this battle and at times I feel lost because I don’t know what else to do to help him.  But I keep fighting, I read, get advice and do all I can to help him find the “ahhhhhhh” moment where he can physically and mentally reach that place where he feels calm which in turn helps him to listen better and follow directions.  Autism and SPD suck, it really does but I won’t let it suck the life out of us, I won’t let it break us…we will keep learning and trying different things until we find what works best.

And so it begins…

Back to school has a different meaning to different people.  Facebook has been inundated with all of the pictures (including mine), status updates about how they are off to a brand new year, better year etc. and many of the status’ are about how happy most parents are to have their kiddo’s back in school.  I am one of the few, or at least I feel this way, that dreads summer vacation being over and starting a new school year.  I enjoy the laziness of summer, I enjoy the freedom of doing whatever floats our boat for the day but most of all I enjoy the lack of a schedule; which goes along with being “lazy”, ha!  During the school year Allie is pretty much self-sufficient when it comes to getting up, getting her stuff together and getting out the door to meet her carpool and that part is nice.  But with Jake, and most children his age, it is a little bit more difficult.  But we manage and get him to school on time.  Before school began I set up a calendar for Jake so he could visually see what day school began and we would count and mark the finished day off with a red X, this helped him a lot. This past Monday was the big day for him, I showed him a schedule of all that we needed to do that morning but after 8 weeks of a more relaxed morning schedule he didn’t want to move…he want to “pway twains”.  He didn’t want to take a bath, brush his teeth etc.  But once we pulled up to the school and got out of the car he was smiling.  Because most parents enjoy walking their children into their class the first day there were a lot of people, lots of loud noises and Jake wanted no part of that.  I had to pull him along.  When we got to his classroom he hid behind me, he saw his teacher (whom he LOVES) and said “Jakey go home”.  But as I coaxed him in the door he relaxed.  He was all smiles when he realized everything was the same as last year and that he would get to stay and play.  Jake found his name and hung up his backpack and was off playing with the familiar toys and exploring his room.  It was nice to see him so happy.  When it was time for me to leave I told Jake goodbye, he blew me a kiss and told me he would see me in a few minutes.  I walked out the door of his classroom with a smile on my face and I just shook my head.  I had prepared myself for the separation, for the crying, the tantrum on the floor but I was pleasantly surprised when he said “bye mommy” like a big boy.  With Jake, you never know what you are going to get.  I try to prepare myself for any circumstance but there are the days, like on Tuesday, that I kid myself into thinking he did fine yesterday so today should be a breeze.  Jake didn’t want to go to school; he cried through breakfast, cried when it was time to get ready, cried in the car and cried when his aide came to get him in the car-line.  I get frustrated with myself because I shouldn’t have let my guard down, I should have prepared for the worst and if the worst happened I would be ready and if it didn’t it would be a nice surprise.  This is how I live each day, I try to anticipate how Jake will react.  To say it gets tiring is an understatement; it is exhausting!  Some might say I am too uptight, I need to let go a little, I need to take a breath and I need to go with the flow of things and those “some people” might be right but that isn’t how I am wired.  I used to be more laid back but since the day Jake was born something inside me wound up and I am finding it difficult to loosen this tight feeling I have.  When you are a mom, you want what is best for your child, you want to protect them, keep them safe and  you want to see them happy.  I feel the same for Jake that I did for Anthony, Nathan & Allie at this age but with Jake there is a tighter grip, there is this pull at my heart because of the struggles he has now and the struggles I know he will have in the future.  You know, I can tell myself to loosen up, relax, give it to God all day long and I try, Lord knows I do but there is still this…the anticipation of what will I do if it is still there nagging at me.  But like with anything in this journey I am learning to adapt just as Jake is, we are learning as we go and that is all that really matters, right?  We adjust our way of thinking, we try to open our minds to new possibilities and we keep going forward.

Jake had a good first week of school, if you were to ask him if he loves school he would say a quiet yes, if you asked him if he had fun he would smile at you and say another quiet yes.  But my favorite is when I asked him if he loves his teachers, he gets the biggest smile on his face and says a little more loudly “yes”.  He is happy and content.  He works hard and tries his best and if I have learned anything from my boy in the past 4 1/2 years it is to work hard, keep trying and most of all, SMILE 🙂

1st Day of School 2013
1st Day of School 2013

What I’ve (we’ve) learned this summer

It is hard to believe summer is almost over!  It has gone way too fast.  As I think back where we were in May and where we are now, I am amazed!  I was scared to cut out some of our therapy, scared that I couldn’t help Jake without some of the people who have helped me in the past.  At the same time, I was excited to spend more time with Jake and Allie and excited to have more free time to do whatever it was we wanted to do that day.  One of the most important things I’ve learned this summer is that I can help Jake.  I know this doesn’t sound like a big “aha” moment but it really is.  I know I don’t give myself enough credit most of the time.  In the past, I thought that I could do it but I also thought it was the therapists who were really helping him and I have always felt they deserved all of the credit.  But after spending 8 weeks with Jake I can now feel comfortable taking credit for who he is right now.  There are some things I don’t want to take credit for but we won’t go there right now – ha!  I know I have said it before and I am sure I’ll say it many more times but this kid amazes me, daily.  He is so much smarter than any of us realize.  He takes in everything and many times I (we) don’t realize this because a lot of the time he doesn’t seem to be paying attention.  But he hears and sees everything; he absorbs it and stores it away.

Another key thing I have learned this summer is that it’s okay to tell strangers that Jake has Autism.  Let me explain why this has been a hard one for me.  Sharing Jake’s disorder isn’t really that difficult for me in general.  If someone asked, I was happy to share.  I wanted people to know, I wanted people to be aware and I wanted people to see that Autism is difficult but it isn’t the worst thing that could have happened.  In the past, I was reluctant to share with strangers that didn’t ask if he had a disability.  Not because I was embarrassed or afraid but I didn’t want these strangers to think I was/am using Jake’s Autism as an excuse for his behavior.  Well, not sharing Jake’s Autism wasn’t the best idea I have had.  First of all, who cares what this stranger thinks, right?!?!  Will I ever see them again?  Probably not.  Over the course of this past year I have discovered that most people are compassionate, they get it and they want to understand why my child is acting different.  More often than not these strangers share with me a story about how someone they know has a child on the spectrum as well.  As of today, I have not met one person who has treated me or Jake poorly.  Here I was thinking I would be judged but I have learned they aren’t the ones judging, I am.  As I have slowly (and I mean slowly) started opening up I have met some really inspiring people who share their stories and it gives me hope.  Recently Jake and I were in a store and he was crying.  Not just a sad cry but that shrill screaming cry that makes you want to wander over to check on that kid to make sure he is okay and not being hurt.  I hate this shrill scream, it gets my adrenaline going and well, if I am going to be honest, it can be embarrassing.  Well, Jake let out a loud scream, a lady peaked her head around the corner and took notice.  I debated what I wanted to say, the woman went on with her shopping but I could see she was staring.  So I got up the courage to say “I am sorry for the scream, my son is Autistic.”  She nodded and smiled and as Jake continued to cry this woman said she worked with special needs children and understands.  She then said it is hard on the little ones who are just learning but keep doing what you are doing he will learn not to scream.  I thanked her and we went our separate ways.  I am discovering that people want to know.  Whether it is out of curiosity or just plain nosiness, either way that’s okay because I have learned if I share I might be able to help someone else.  And if nothing else, they know I am not hurting him and he isn’t just some kid who is screaming because he didn’t get his way.  By the way, Jake was screaming because he dropped a piece of paper he had been holding.  So for me, opening up has blessed me more than I ever thought it would.

Jake has learned a lot too.  He has learned to stand up and go potty like a big boy, he learned to drink from a straw and learned that it is okay to drink from cups that are not his own.  Jake used to refuse any cup that wasn’t from home, he would rather go thirsty than chance drinking from something that wasn’t familiar.  Jake has learned to play more appropriately too.  He will now play with his trains, make train noises and roll them along his train tracks as opposed to lining them up to just stare at them.  He has even started requesting “mommy, pweasssseeee pway with Jakey”.  Ummmm, yes, certainly I will because this is HUGE!!  These are words coming from a boy who, in the past, would rather play alone.  The boy he was wouldn’t let us talk to him about what he playing with and he would become so upset if we dared to sit next to him to play.  Now he absolutely loves it when I sit down with him and say “let’s play”.  This smile comes across his face that I cannot begin to describe but this smile invites me in and allows me to be a part of his world.  Of course it brings a smile and tears to this mom who has longed to play with my boy!!  Jake has also learned to (well, it is still a work in progress) to be patient and wait.  I have learned that I need to make him wait on purpose.  This concept is not an easy one for Jake to learn but as we know, patience is key to many areas of our lives.  Jake must repeat his request at least 3 times and each time I say “be patient, I will help you in a minute”.  But he is getting there.  Jake has learned to listen better, also a work in progress.  Again, not an easy concept for him.  I will ask him “Jake are you using your listening ears?”  Jake will touch his ears and say “yes”.  Or I will tell him “turn on your listening ears, I think you forgot to do that”, he will look at me, touch his ears and say “Silly Jake forgot”?  You can’t help but laugh.  Jake is working just as hard as I (we) am and to see him trying and following our requests leaves us awestruck at times.

This has been a great summer!  We have had so much fun, learned a lot and have made some great memories!!  I hate for it to end.  I have enjoyed spending so much time with Jake but I am ready for the new school year.  On Monday Jake starts, what I hope to be, his last year of preschool.  I can’t wait to share with you all of our accomplishments!!!

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