Siblings

A huge part of our journey with Jake is the interactions he has with his siblings; Anthony, Nathan & Allie.  Until the past 6 months Jake has had a hard time with all three of them.  Jake’s first reaction when seeing his brothers (they live on their own) was to scream, run away and cry.  It would take him about 30 minutes to warm up to them, almost like he was seeing them for the first time, each time.  Jake gave Allie the same response, whenever she would come home from school, a friend’s house or even when she would walk into a room that Jake was in he would scream and run away.  It was heartbreaking;  I knew the boys and Allie wanted to play with him or give him a hug and Jake wanted no part of it.  Even though they would say it was fine, I knew that it wasn’t.  I could tell they wanted more from their littlest brother but Jake just didn’t have it in him to interact; something we worked A LOT.  We would show him pictures of his brothers and sister and tell Jake to say “Hi _____”.  Jake would cry and fought it but eventually got it and so the change began.  Jake will now greet his brothers with a smile, high 5 and sometimes a hug.  When I tell Jake that he is going to see Anthony or Nathan he gets so excited and always has a huge smile on his face when he sees them.  When Allie (AKA Sissy) comes home from school, a friend’s house or walks into the room Jake will run up to her and say “Hi, Sissy”.  I love this and I truly love seeing him become so happy at the mere mention of their names!

If you follow my blog then you know we have cut way back on therapy this summer.  There have been times when I questioned my decision but almost immediately that question is squashed.  I was sharing with some friends yesterday how this is the first time in 2 years that Allie has gotten to spend a lot of time with Jake.  Although I knew this fact, I hadn’t really given it a lot of thought until now.  The past two summers we have spent so much time involved in therapy that when Allie was at home Jake usually wasn’t and vice versa so the only real interaction they had was just a few hours in the afternoon/evening which usually meant Jake was screaming at Sissy, Sissy getting upset, me trying to coax Jake to sit with his sister or just say ‘hi, sissy’.  It was painful for all of us.  Their relationship has changed so much over the past 5 weeks.  Jake seeks her out, he will go into her room and independently say ‘play with me, Sissy’ or she will come into the den and Jake will jump up and down and say “Sissy’s back”.  Many times it is really cute to watch them together other times they behave like typical siblings with the usual bickering etc.  Here is how that usually goes Sissy: Jake stop climbing on that, Jake: No, Jake do, Sissy: Jake I said stop, Jake: No, Sissy…it goes on from there.  Even though their bickering gets on my nerves at times, okay not at times…the bickering always gets on my nerves – ha…but when I really think about it I smile because hey…he has learned how to talk, express his feelings to some degree and he is behaving like a typical sibling, bickering and all.  Because there is an eleven year age difference between them, Allie is like Jake’s second mom.  If I am busy he will now go to her and ask her for help.  Allie babysits, makes him lunch, dinner, takes him to the potty or whatever it is that Jake needs.  If Jake knows she is home he wants to be in her room, he wants to know what she is doing — basically he wants to be with her.  Jake cannot and will not go to bed without giving her a hug and a kiss and if Allie has a friend over they get at least a kiss too.  Such a HUGE HUGE change from the boy he was 6 months ago!!

These past 5 weeks have been better than I ever thought possible.  We have spent a lot of time together but most of it has been good…well, not good it has actually been great.  Allie has gotten to really connect with Jake in ways she hasn’t been able to before.  I think some of it has to do with the fact that she is older but more than that I believe it has to do with the fact that Allie gets to be with Jake more than just one or two days a week.  We have normal days; cleaning the house, running errands and then the fun stuff too.  We don’t have to schedule time around Jake’s schedule for the pool, park or whatever it is we want to do which means we have a lot more time to just be.  Last night Allie told me she had a great “bonding” experience with Jake.  She told me that they played, sang, ran around, laughed and just had fun.  When Jake went to bed she kept saying how funny Jake is and how much she loved her “bonding time”.  Words I love to hear, words I have been waiting to hear.  Allie left this morning to go on a week-long mission trip and even though she is excited to go and as she says “take a break from Jake” I know she will miss him greatly.  She wouldn’t let me put him to bed last night without giving him a huge hug and kiss.  The awesome thing about this isn’t that Allie loves him or wanted to hug him but that Jake wanted to hug and kiss her too.  He waited patiently (well, as patient as a 4-year-old can) for her to get out of the shower.  While we waited Jake said “I give Sissy a big hug and kiss”.

The relationship that Jake has developed with his brothers and sister over the last several months is better than I thought possible.  Something I had hope and prayed for; something I dreamed about too!  I have said it before and I am sure I will say it again but it is SO nice to see all of the long hours of therapy paying off!!

Siblings

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No more screaming…

Since Jake was old enough to become aware of his surroundings we have been working with him; pointing out everything around us.  I can remember when he was around the age of 2 and we saw a big fire truck next to our car.  I pointed it out to him and said “Look, a fire truck!”  Jake would look with a blank stare as if he saw nothing.  He wouldn’t smile, cry or show any emotion to the big truck outside our car window.  He wouldn’t notice the big train, other cars, animals, people or anything for that matter.  It was like he was in a daze and the world around him didn’t exist.  We had Jake’s vision and hearing checked thinking maybe he had trouble seeing or hearing, these checked fine.  I couldn’t understand this, I didn’t know why or how to help him see the world around him.  Once diagnosed with Autism we understood this a little better.  Because of Jake’s autism and delay’s he didn’t know how to process what he saw or heard, so basically Jake would shut down.  We had to teach Jake to take notice and see the world around him.  We had to teach him how to process what he saw as well as teach him appropriate responses.  Not an easy task by any means.  Everywhere we went we would talk to him about what was beside him, around him and well, we talked to him a lot!!  To say it was tiresome for us would be an understatement!  Jake wouldn’t respond; he wouldn’t look or take any notice.  If we were in the car or he was in his stroller or outside he would stare straight ahead, the world around him didn’t exist.  We couldn’t make him see the birds, dogs, cars or anything.  I think he was tired of us talking to him about his surroundings too.  Jake eventually started screaming if we mentioned the truck, animals, people, etc.  If someone were to approach him and say hello he would scream; it wasn’t just a baby’s scream it was something else.  Something I can’t really describe but it was deafening and unnerving.  I always felt badly for the people at the grocery store, friends or even family who would want to say hi to him because he didn’t respond the way most babies or toddlers do, he always screamed!  John, Allie, Anthony & Nathan got this a lot too.  When John would come home from work he would go to Jake and say ‘hey, buddy’ and Jake would scream, if Allie came in the room or home from school Jake would scream.  Jake’s brothers would come over for dinner or to hang out and Jake would scream.  Because I stayed home with him I never got this reaction from him but I can only imagine how it would feel to be the his dad, brothers or sister and to get screamed at instead of a smile.  All they wanted to do was to hold him, play with him or just say ‘hi”  and Jake wanted nothing to do with them.  At times it was heart-breaking.  Again, we had to teach him how to appropriately respond to family, friends and strangers.  This took a long long long long time.  Geesh, it was hard.  We first started working on this in July, 2011.  We would go to Jake’s behavior therapy and this was one of the first things we worked on with him.  We would practice saying ‘hello’ when someone would say hello; who knew you had to teach this, I sure didn’t.  I had to learn how to teach him as well.  Jake hated it, he would cry and the therapist would say “hello” and Jake would scream and cry some more.  One time we waited him out for more than 15 minutes to get him to say hello.  This was a start, and now 2 years later he will finally appropriately say ‘hello’.  While we worked on this we also worked on not screaming when we pointed out his surroundings.  As I sit here and think back on all of this it is crazy how much we worked on this…it was non-stop reassuring him, telling him to just look at the fire truck or person and say hello.  I honestly thought at times he would just always scream and that he would never get it.  Fortunately I was wrong.

Jake will now smile when he sees a familiar face.  He will smile, squeal and run to his dad, brothers or sister when they come through the door.  He will point out cars, fire trucks, airplanes and animals with enthusiasm when we are out.  The best part of all is — he doesn’t scream!!  Jake will now respond with a huge smile, he will tell us what he sees and if it is our friends or family he will give them a high 5 or say hello.  We are still working on the verbal ‘hello’ but at least he doesn’t do the scary scream!!  Last week we were on our way to swim lessons and while we were waiting at a red light a big dump truck pulled up along side our car.  It was right outside Jake’s window.  Jake looked at the truck and said “that’s a really really big truck”!!   First I was stunned and wished someone else had been in the car with us to hear this statement.  I was so happy and excited that he saw the big truck and that he pointed it out and even better he used his words to describe that it wasn’t just a truck but a really really big truck!!!!  So yeah, wow…he is finally starting to take notice of the world around him.  He notices other kids, people, trains, trucks, animals and can identify them now.  It is as if he is seeing the world for the first time and it is truly amazing.  To see Jake light up at a really big truck or to see him look up at the sky if he hears an airplane or take notice of the horses we pass while in the car is just incredible .  I love that his first response isn’t to cry when someone approaches him.  Jake is still tentative but overall he reacts appropriately, takes notice and smiles.  Jake is growing, learning and expressing his wants, thoughts and feelings!  No words come to mind to describe this except — WOW!!!

goal #1 checked off the list….

This summer I have put in place several goals that I hope Jake will accomplish before he returns to preschool this fall.  A few of the goals for Jake include drinking from a cup with a straw, pedaling a bike, dressing himself and standing up when going potty.  Sometimes changing things up with Jake is not only difficult for him but for me as well.  I need to be mentally, emotionally and physically ready to make big changes to his routine.  Jake likes things the same; he really doesn’t like change (who does-ha!) and typically has a meltdown when his normal routine is shaken.  Some changes go over better than I ever thought they would and other’s require a lot of mental and physical strength on my end. We have been working with Jake to drink from a straw since he was about 18 months old.  At that age he didn’t understand or couldn’t grasp the concept of sucking using a straw.  He would cry and get frustrated.  So we would put the straw away for a week or two and try again.  Over the last several months I have been working with Jake; offering him a variety of cups, juice boxes etc. with no success.  I knew he needed to switch cups and because Jake’s preschool teacher had been prompting me to ‘just do it’…we did.  This past Monday we quit the sippy cup cold turkey and only offered him straw cups.  I took Jake to Target and let him pick out a few different cups although he kept picking out the same cups we already had at home, we found a few new ones that he seemed to like.  When I offered him the new cup I told him he was such a big boy and that big boys drink from big boy cups and not baby cups.  Jake doing his typical I hate change routine, ran away, threw toys, screamed and said he wasn’t a big boy he was Jake.  Oh, another thing —  since Jake can read he read the label on the cup and it said ‘Disney Baby’ (it is a Cars the Movie cup) and kept saying “Disney baby cup”.  Need to remember to remove labels before handing him anything like that – ha!  We had our meltdowns and tantrums, he refused to drink from the cup unless I held it for him but by Monday evening Jake was drinking from his new cup!  With each sip he took we cheered and clapped and gave him lots of praise.  We cheered and clapped and he would sip then we would cheer and clap etc….this went on all afternoon!  The great thing about Jake is he loves to be praised.  I know most kids do but with Jake it is really all the reward he needs.  He loves it when you clap for him and say “Yea, Jake!”.  His face beams and he gets this twinkle in his eye that is really indescribable.  By the end of the day on Monday Jake was independently drinking from his new cup and if we didn’t cheer he would look at us and say “Yea, Jake!”.  On Tuesday, there was no question when we handed him his new cup, he just took it and drank from his new straw!!  Goal 1 checked off the list — “Yea Mommy”!! All of this is a learning experience all of us, including Jake.  I have been a mom for a long time and since I have 3 other children I often find myself trying to remember what I did with them to help them learn new tasks when they were Jake’s age.  Sometimes it helps and other times it doesn’t.  There are a lot of things my other kids just did; I only had to show them once or twice and they got it.  It isn’t that I am comparing Jake to them or wondering why it is so hard for Jake — I just took for granted how the little things with them were just that…little.  With Jake these are huge tasks.  We can’t just show him once or twice, we have to be repetitive in talking about it, in showing him as well as encouraging him to try the new task.  Some tasks go fast with little effort but most physical tasks take much much longer.  It requires a lot of patience on my end.  There are many times I put a particular task off because I know it is going to be hard, I know it is going to take a long time for him to master.  But because we are taking a break from some of his therapies it has made me realize that I (we) can do this, I do have the skills to help him accomplish all of his goals.  It seems like a big burden and if you had asked me a few weeks ago if I was scared I would have said “YES”.  But now after being with him and working with him on a daily basis, I know I have it in me to help him reach our goals.  I know Jake has it in him too 🙂

New Cup

Swimming

This past week Jake took swimming lessons for the first time.  Our main goal for the lessons was more about teaching him water safety than actually swimming.  But if by the end of next week he is swimming….we’ll take it!  We have been to the pool once before swim lessons started and Jake was so funny about his swim trunks getting wet.  Let’s just say he didn’t like it!  Jake hates for his clothes to be wet or to have anything spilled on them so when his trunks got wet in the pool he tried to take them off 🙂  He did the same thing the first day of lessons, his trunks got wet and immediately started trying to pull them off.  The good thing was he didn’t obsess over it and moved on which is HUGE for him!!  I think having one of his preschool friends there helped him see it was okay.  Jake also loved having his preschool teacher and Allie there as well.  I am so thankful they got in the pool with Jake to help him and work with him along with the swim instructor.  The first day Jake just wanted to sit on the steps, he didn’t want any splashing and cried if water got on his face.  By the third lesson Jake was going under the water!!  He learned how to bounce in the water, move his arms and to kick.  If you asked Jake if he liked swimming he would say ‘I reawwy wike swimming!’  We have 3 more lessons this week, can’t wait to see what he will be able to do next!!

First Swim Lesson2nd Swim Lesson3rd swim lesson

Momma Meltdown

I have been debating whether I wanted to write about this or not, but decided I needed too because our journey wouldn’t be honest without the good as well as the not so good stuff.

From the beginning we have had Jake in some pretty intensive therapy.  Everything I have read and have been told was that early intervention is the key to helping him succeed later in life.  I firmly believe this and we did everything we could to get him as much therapy as possible.  Our goal from the beginning has been to help him so that he will be ready to attend a typical Kindergarten classroom.  For the past 2 plus years, every day has had some kind of therapy and I felt good about it.  We were helping Jake!  Last summer Jake had some form of therapy 4 out 5 days of the week, our only free day was Friday.  Along the way friends, family and therapists reminded me to take time for myself and to take care of me.  I thought ‘I take care of myself a little but I could wait, Jake needed help now and I would do whatever it takes to help him’.  Well, you can only go at this pace for so long until the fire in you slowly burns out.  As we neared this summer I had told myself that I wouldn’t repeat the amount of therapy we had last summer, it was too much for Jake and too much for the rest of my family.  Jake progressed at a fast pace but I was slowly growing tired with all the driving back and forth to therapy and having therapists come to my home.  As I started preparing for this summer’s schedule I lost track of myself and the rest of us (again).  I scheduled him with different therapies 4 days of the week.  When I thought about it, 11 hours out of my week for therapy didn’t seem like much at all.  I mean, he went to school 8 hours a day so 11 hours in a week wouldn’t be too much (yeah, right!).  As I started filling in my calendar and seeing it all written down on paper, I realized I had repeated the same schedule as last summer.  I had scheduled Jake with therapy Monday-Thursday!!  There was no time for just Jake, no time for us to have a typical summer day; you know the ones where you wake up and don’t have any plans and you can do whatever you want.  There is a reason they call it summer vacation!  A pit started growing in my stomach.  Allie’s schedule is a little more involved this summer as well.  She has joined the cross-country team which means early morning practice, evening practice as well as fund-raising events.  Plus there are the daily things that need to be done around the house and keeping up relationships and making time for John.  The pit in my stomach was growing by the second.  I wasn’t leaving any time in our week but one day to just have a fun and what happened last summer was that the one day off meant we spent our fun Friday doing nothing because he and I were exhausted.  I remember going back to school and people asking us if we had a good summer, I would smile and say yes but the reality of it all was that our summer sucked!  So here we were on the same path as last year and I was getting myself worked up, angry and frankly, not a pleasant person.  I was not being kind, I was not being supportive and frankly I was not being the kind of person anyone would want to be around!  So this past week John and I were talking about Jake’s schedule and he said “I thought you were going to cut back a little this year”.  My defensive response was “I can’t, Jake needs this”.  John said “okay, but what about you?”.  Still being defensive, I thought who cares about me…this isn’t about me but our boy who needs help.  It made me angry because I knew John was right, I knew I needed to cut back but how do I do this without jeopardizing Jake?  Here were my thoughts What if it hurts him, what if my decision is wrong and he regresses so much that we have to start over.  I don’t know what I am doing.  I don’t have a choice.  The therapists know more than me, they are trained, if they say I need to do this then I have to do it at whatever cost.  At whatever cost is what held me up here.  As I prayed about this I thought about the costs.  My first thought was how I would be miserable, again.  The rest of my family would come in 2nd to Jake…again.  Jake would be overworked, tired and cranky, again!  My marriage is important to me as is Allie and the rest of my family and friends.  Would it cost me the things I hold closest to my heart, I didn’t know and I didn’t want to find out.  What I did know and what I felt led to do was make some big changes!  It scared me because I had to listen to my own instincts and do what I knew would benefit not only Jake but the rest of us as well.  I prayed hard about all of this and in the end I knew eliminating some of Jake’s therapies was the best thing for us.

I made the difficult phone calls and sent the difficult emails explaining to my therapists that I, we, needed to take a break.  I am fortunate that I have a great team of people supporting us and was told that Jake might regress a little but overall Jake will be fine.  Because he is doing so well that there is probably no better time to take a break than now.  The pit in my stomach slowly disappeared and the heavy weight lifted and as it did I knew our decision was the right one.  In talking with a friend of mine she said something that I had thought all along as well, she said “I just thought you had to do this; that there wasn’t a choice in Jake having therapy or not” and I said “I thought the same thing”.  I really did, it never really occurred to me that we could take a break or that we should.  But as I was reworking our schedule I realized, I am Jake’s mom and like anyone else we do have choices.  I have worked hard with Jake, I have been consumed by what is best for him, I have read books, sought advice and repeated all of these things until it has become an unhealthy addiction, so to speak.  So I am cutting back our therapy; Jake will have 2-3 hours a week and only on one day.  This frees up the rest of the week for Jake to be a typical little boy doing typical little boy things.  We can take some swimming lessons, go to the park, go on vacation, have a play date but best of all have the freedom to do whatever we want for that day.  If it is a difficult day, it will be okay because it won’t be our only free day — we have others.  Instead of dreading the rest of our summer I am looking forward to it and looking forward to working with Jake each day so it doesn’t feel like therapy just playtime.

I have let Autism define Jake, and I am not proud that I have let this happen.  Autism doesn’t define Jake but a part of who he is.  There is a child here who loves to play, sing, read, laugh, act silly…the list goes on.  I am excited that I will have time to see him as a child this summer and not just as an autistic little boy.

It only took 18 months!

One of the things that Jake has a hard time dealing with is anything new; new situations, new people and even new toys.  When Jake was around 18 months, just before we started any therapy and didn’t really know what was going on with him, he would cry when offered a new toy.  I remember one time buying Jake something with Thomas on it, when Jake saw it he cried and ran away.  We left the toy out and would try to get Jake to come look at it or play with it but he had no desire to come near the new toy.  If we were in a store that had Thomas the Train and Jake saw it he would either cry or cover his eyes and look away.  At the time, we thought it was funny and a little strange.  When we first started Developmental Therapy his therapist would bring toys to help Jake play.  On one of her first visits she brought a piggy bank toy and when she showed it to Jake he screamed.  It was so odd to me because we were just beginning this journey and in my experience with my other kids they all LOVED new toys.  I just didn’t understand why he would cry and get so upset when offered something he didn’t recognize.  I would later find out it was part of Jake’s autism, he just couldn’t process what he was supposed to do with something new.  The first few sessions Jake’s therapist would put the toy where he could see it.  Eventually he stopped crying when she pulled it out of her bag and over the course of several sessions she would move the pig closer to him until one day he finally picked it up.  By the time Jake was 3 the piggy bank was one of his favorite toys that she brought.  Jake did this with almost every new toy and it took time for him to come around to see it could be fun.  When Jake was about 2-2 1/2 John’s mother bought Jake a stuffed Woody doll, he had just discovered Toy Story.  We all thought he might like it, even though it was stuffed it wasn’t soft and fluffy.  Let’s just say he didn’t!  Jake wouldn’t touch the doll and if he did he probably threw it across the room!  Jake hated anything stuffed and really hated the soft fluffy stuffed animals or dolls, if he touched something soft he looked like he might throw-up!  We kept Woody out and around in view but Woody would always seem to get lost; Jake would hide him so he wouldn’t have to look at him.  Oh, if we ever showed Jake the Woody doll Jake would scream!  To say Jake hated this doll is an understatement!!  Now Jake is 4 and as you know he has come a long way, he still doesn’t like soft and fluffy stuffed animals but about 2-3 months ago Jake started toting Woody around.  He wanted to sleep with Woody and even started playing with him.  If Jake was watching Toy Story he would run to find Woody so he could watch Toy Story too.  It is SO cute!!  Jake will cover Woody with the blanket, give him some of his water and read stories to him.  The other night Jake was sitting with me on the couch playing on his iPad before bed, he had Woody with him and was taking Woody’s hand to touch the screen on the iPad.  I asked him if he was letting Woody have a turn and Jake gave me a look as if to say, duh…didn’t you just see me?  Woody goes anywhere we go; doctor’s appointments, therapy, the grocery store etc.  Even though it took Jake about a year and a half to warm up to Woody, Woody has become Jake’s new best friend!

Jake&Woody