So the other day Jake comes up to me and says “I am SOOOOO hungry!” I turn to John and say “did you hear that?”, this is a phrase that is heard in our house many many times a day. We laughed because this was a first, not that he told us he was hungry but that he was ‘sooooo’ hungry. Every day Jake says something new, something that a typical child might say and it just makes our hearts smile! Even the little defiant phrases tend to make us smile because we have waited so long to hear him talk. If you think about a typical child they may start babbling and saying small words like mama or dada around 1 and then their language progresses and at 2-2 1/2 they can talk a little more clearly and come up with some zingers. Well, this is where we are right now. Jake is thinking and using his words to express his thoughts and needs. One of the biggest moments, one I will remember forever, happened this past week! Something that is huger than HUGE!! Something every mom can’t wait to hear and it seems like I have been waiting on this moment forever! I was sitting on the couch reading a book, or trying to, and Jake kept trying to get my attention. He was playing but getting louder and louder. I told him we would play together in a few minutes. Because that wasn’t the answer Jake wanted to hear, he walks over to me, puts his head on my chest (blocking my view of the kindle) and said “Awwww, mommy…I love you.” Whattttt???? This was all on his own, no prompting….just on his own! To say my heart melted would be an understatement! My boy of 4, who just started saying things on his own, walked over to me and told me he loved me! Of course the book was put down and I squeezed him tight with tears in my eyes! Jake looked at me as if I have lost my mind 🙂 I started thinking about it, we’ve prompted him to say ‘I love you’, he has repeated this to us but up until now has not said it on his own. I know Jake wanted me to play with him, he wanted my full attention and he had to have thought that if he said this I would immediately stop what I was doing…he was correct!! I put my kindle away and he had my full attention!! These are the moments, these little tiny less than a minute moments that make all that we do so worth it! I can still feel his head on my chest and still hear the words, his words….something I don’t think I will ever forget!
One of the things I dread the most when it comes to Jake is giving him a hair cut. Actually, we both dread it 🙂 I wish I could take him to the barber or salon and have them do it for me; but that won’t happen for a while. The last time we went to a salon Jake was about 2 and he slapped the hair stylist in the face. I was mortified! And get this…the hair stylist turned out to be the niece of one of my dear friends! Needless to say we haven’t been back. This was all before I learned about Jake’s sensory issues and how some kids with Sensory Processing Disorder hate having their hair brushed, washed or cut. Jake falls into this category. When I see that Jake’s hair is growing out and is going to be in need of a cut I have to start prepping mentally for it. Seriously, I get a pit in my stomach!! I usually try to do it when no one is home because the crying is something you wouldn’t want to witness! You would think I was taking a knife and sawing his hair off. I hate this for him but it has to be done. On Sunday, I got my courage up and brought out the clippers and Jake immediately started crying saying “no haircut, no haircut”. I used to try scissors but he hated that too and it took twice as long. And since I don’t have any training in cutting hair it ended up looking pretty ragged. It usually takes about 10 minutes before I can get Jake calm enough to get the clippers near his head. You should see him throwing his arms about and screaming, you would think he was being chased by a swarm of bees. Once I start he usually calms down a little, I think it is because he realizes it doesn’t hurt and that it is just uncomfortable. The whole time I am clipping his hair he continues to say “all done, pwwwweeeeaaaasssseeee”. Once I get through his hair cut it is time to trim it out and that is a battle in itself. We both hate it!! I tend to want it to be perfect with straight lines etc. and that just doesn’t ever seem to happen. He cries the entire time and flinches which sometimes causes me to cut big chunks out of his hair…attractive, right?!? This process usually lasts about an hour — it probably would only take about 10 minutes if he would sit still and not scream and wave his arms around. Yeah, so you see why I hate it so much. So I am thankful today that it is over and we have about 6 weeks before we have to go through this process again!
‘Success is steady progress toward one’s personal goals.’ Jim Rohn
If you are a parent of a typical or a special needs child we have many things in common. But one commonness that keeps coming back to me is progression. We all want to see our children learn, grow and make progress. I spend a lot of my time looking for the signs of progression with Jake. When I say I, what I really mean is we. We being Jake’s family, friends and the team that works so hard with him on a daily basis.
On Monday Jake had his end of the year program at preschool. I was nervous and very anxious because times before when I have been in the classroom Jake has cried and hid from me and frankly didn’t want me there. But as we walked into the classroom and saw Jake, he smiled. Not just a little smile but a big huge enormous smile!! He was happy to see us, he wanted us there and seemed proud to have us in his classroom. Jake sat in circle time as the parents of the children watched; he smiled and kept checking to make sure we were there. Jake went up to the board, which is like a giant IPad, and proceeded to select the day of the week and that day’s date. He looked again and smiled. It was amazing to see; knowing how last year he wouldn’t participate, he wouldn’t sing, he either cried or hid. Jake did hide once and didn’t want to participate during some parts of the program but that was a small almost insignificant part. Jake hung out with John and me while his friends participated in circle time but he eventually went back to circle time to participate and to receive his certificate for doing so well during the school year. When it was time for us to leave Jake said good-bye, gave kisses and went back to his friends — not even a tear or a meltdown. Our hearts were so full when we left. We went in with little expectations from Jake, we went in knowing he might not do well, knowing he might have a meltdown and that would have been okay too. For me, the biggest progression I saw from Jake that day was the smile. The full on, whole body smile that acknowledged me that acknowledges us, he welcomed us into his class and was genuinely happy to have us there. That is what it is all about. Sure, I love the fact that he is learning and growing academically but there is something to be said about the glimmer in my boy’s eyes that says hey, you’re here and I am really really happy you came to see me!
Jake has made so much progress since the beginning of the school year. When school started in August 2012, Jake was not really talking, he could only say a handful of words. He had trouble following directions. Jake couldn’t cut, hold a crayon appropriately, had a lot of trouble with transitions and couldn’t play with a peer without an adult helping him play. Here we are, May 2013 and Jake can talk in full sentences. Jake can tell you what he wants and at times can be a little demanding -ha! He can follow simple directions. Jake can cut with scissors, hold a crayon and draw circles, squares and triangles. He can make letters using his finger and is learning to use a crayon or a pencil to write letters. He still has issues with transitions but those are getting better and he doesn’t always have to have an adult with him while playing with a peer.
In a year’s time my boy has grown, he has progressed. He is progressing from a toddler to a little boy and that is huge. He is becoming a real person as Allie likes to say. For now I won’t worry, I won’t feel anxious, I will take what we have seen over the past year and keep working; keep striving for more!!
I am not a fan of changes, there is something to be said about the comfort that comes with routines. I like knowing and being in control of the day, weeks or even months. Routines are easy to navigate because we all know what is supposed to happen and they make life a little bit easier. Routines are Jake’s best friend as well. He knows what to expect Monday-Friday; he knows he goes to school. Saturdays and Sundays are a little more difficult for him to understand although every Friday evening I say to him “Tomorrow is Saturday, do you know what that means?” Jake will look at me and say “school” and I always say “nooooo, it is Saturday…Mommy & Jake day”. We do this several times on Friday and many many times on Saturday mornings which usually include a meltdown and Jake crying that he wants to see Ms. J. Mommy and Jake days started when he was first learning to talk. One day he was crying because he was sick and had to stay home. He didn’t understand he couldn’t go to school so in my effort to try to make it fun this became our slogan. So trying to explain to him that it is about to be summer vacation is challenging at best. Jake wants to see his friends, his teachers and just can’t wrap his brain around the fact that there is such a thing as summer vacation. Last night when I was putting Jake to bed we were talking about summer vacation and all of the fun things we are going to do he looks at me and says “I get to see Ms. A”. Ms. A has been one of Jake’s therapists (outside of school) for 2 years. She recently told me that she would be changing jobs to work for a great school, but I am sad. Sad that we are losing a great therapist and sad that she won’t be a part of our every day life. But knowing the change would be hard for Jake made me so anxious! I knew Jake would bring this up at some point and all week I have been thinking how I would tell him we would see Ms. A to play but not to work. So last night I told him we would see her some over the summer but not every day; this didn’t go over very well. He wants the comfort of knowing she will be there. And even though we will be working with someone we have known for at least a year, that just isn’t good enough for him. He wants his routine. He kept saying I see Ms. J and Ms. A and then we swim and go to the park. As I said before I don’t like changes in general but because of Jake I really find them more difficult. It is the unknown of how Jake will react to those changes, will it be a meltdown, will he say nothing or will he accept it and move on. It is also the constant repetition of what our schedule will be, showing him with a visual schedule who we will be seeing and on what days. He can see this and it helps but at the end of the day he will say the same thing “Jake go to school, see Ms. J, then see Ms. A”. We have been through this before as we had to change speech therapist’s due to insurance issues. That was difficult for both of us. Jake will still ask if we will see Ms. L today. It is hard. It is hard when I have to repeat our schedule many times throughout the day, hard to try to reassure him that it will all be okay and hard because even though I know he understands the words he doesn’t necessarily understand their meaning. Or maybe he does and just wants to mess with me to see how many times he can get me to repeat myself -ha! But one thing I do know is he will eventually get “it”, it might not be until the end of summer but he will get it! Change is difficult but is necessary. I don’t like it but if nothing changed and everything stayed the same life might get a little boring. I guess we all need to have a meltdown every once in a while, cry about the upcoming changes, repeat to ourselves that it is going to be okay and at the end of the day that change that was so feared might just be worth it!
Jake has been home sick for the past two days and although I hate that he doesn’t feel well, I sort of like it. When Jake feels his best he will let me squeeze him quickly and if I want to hug on him for a bit longer I have to count to 10 so he knows how long he has to do this with me. He won’t sit in my lap for more than a minute and if I can get through an entire book I am lucky. But when Jake doesn’t feel well he will sit with me for what seems like forever, he will lay his head on my shoulder, let me wrap him up in my arms and kiss him as much as I want. I love this! I mean I REALLY REALLY love this! It’s like I just can’t get enough. I feel like I have to make up for the times I don’t get to squeeze, kiss and cuddle him. I am thrilled that Jake has progressed as much as he has, it took us a long time to get here. I am thrilled that he will let us give him quick squirmy hugs and kiss him but it is always on his terms. Part of it is the autism in him but part of it is he just doesn’t want to stop whatever it is he is doing for a quick hug. It can be hard to see the faint line between autism and typical 4-year-old behavior and it can be very frustrating! What’s interesting is I know Jake understands my struggle with that invisible line in some way. He is very smart and you can see he understands, you can see that look in his eye that says “I hear you but I am going to make you think I don’t”. It is hard because we tend to think autism first. Before he could talk we didn’t think he could understand us fully; we didn’t really know what he could or couldn’t understand. But to be good parents we have to set limits and discipline when necessary. It was a little easier with our older kids, we knew they knew what their limits were and we knew they understood why they were being disciplined. With Jake there is that fine line again, does he understand all of this, do we blame the autism and let him do what he wants or do we treat him like a typical kid and expect the same from him as we did the others? Over the past year, especially, I have had to change my way of thinking here. It is hard to not think autism first, it is hard not to say “well, he just doesn’t get it” but when I do this it isn’t helping him anymore than it wouldn’t help one of my typical kids. In my opinion, this is one of the hardest parts of this disorder. For some typical children you can tell them ‘no’ one time and that is enough. For others it might take 2 or 3 times and you know they get it because later you can say something like ‘hey, didn’t I tell you no’ and they will usually stop and do something else. My point is, usually it doesn’t take long for a typical child to understand and not repeat the inappropriate actions. What I am finding with Jake is that it seems to take weeks (sometimes months) of repeating the same discipline in order for Jake to get it; for that bell to finally go off in his head that reminds him that this is inappropriate behavior. Oh my gosh this is so hard! There are times I feel as if all I do is repeat myself, repeat the rules, repeat the discipline and it is exhausting. But this is the best way for Jake to learn is by repetition. Although Jake loves repetition we don’t…it gets old really fast and is extremely tiresome! There are days I just throw up my hands and give in but most days I try to stick to what I know will help him in the long run. So yeah, I confess I secretly don’t hate it when Jake doesn’t feel 100%, it means I can take a break from discipline, I can take a break from repeating myself a million times a day and just cuddle my sweet boy to my heart’s content.
We have had our fair share of rain over the past several days. Let’s just say rain & Jake do not mix well. He hates it, to be more precise he is afraid of the rain. The other day we were leaving for school and it was pouring rain, we walked out of the door and he froze. Jake wouldn’t move; he was terrified. My heart always hurts for him because he is so afraid. We have worked on this, trying to help him understand that the rain won’t hurt him and we have explained it is just water but he remains the same…terrified. When it is pouring I have to carry all 55 pounds of him to the car which is no easy feat. I wish I had an attached garage to protect him more but I don’t so we have to brave the rain, me carrying a clinging, crying 55 pound boy and praying the whole time I don’t drop him. In some ways it is funny but mostly not. Jake has not liked the rain since he was a baby, we often wonder if it is a sensory issue and wonder if it hurts his skin when it touches him. After questioning this for the past few years I am still not sure. One thing I am always grateful for are Jake’s teachers in car-line at school. The other day Jake’s speech therapist and one of Jake’s aide’s met us at the car, one with the umbrella and the other coaxing Jake out of the car. Luckily Jake’s aid is strong, she picked him up until they got under the covered walkway, as soon as he was under the cover he was fine. The smile came back and he wasn’t afraid anymore. Even though this has been Jake’s pattern for as long as I can remember it is still hard, frustrating and it makes me sad. I try my best to make it easier on him because the look of fear and discomfort on his face is really heartbreaking. But all of this leads me to think am I am doing the right thing? Jake is pushed daily outside of his comfort zone. He has been pushed since he was 18 months old. Being pushed is what has helped him get over the daily hurdles he faces. There are times I get tired of pushing him past his limits; it is hard to put it mildly. There are tears (both Jake’s and mine) and meltdowns. But in the end there are always smiles and with that comes the great feeling of accomplishment. We work on SO MANY small and big obstacles, from touching slimy soap to jumping with both feet together. If I wrote down all that we have worked on in the past and the goals that are in place to work on long-term, it would be an incredibly long list. So to answer my own question, for now, yes I am doing the right thing. Like anything, we have to pick our battles and make decisions based on the most important to the least. It is hard because they are all important but the rain can wait a bit longer. Good thing I have started working out again, it looks like I am going to need my upper body strength!
Jake entered our lives on February 4, 2009. He came in weighing a hefty 10 pounds and 3 ounces and very loudly, I might add. Jake arrived right at 40 weeks and although he was a lot bigger than the doctor’s thought he might be, he was very healthy!! But one memory stands out; I was looking at my brand new baby and then I looked at my best friend and asked her “does he look ok, does he seem alright?” Who knew this pattern would go on for the next 18 months. Jake, like many brand new babies cried and he LOVED to be swaddled. The tighter the blanket the better. The first few weeks Jake seemed to cry a lot and we found it very hard to comfort him. Little did we know at the time this was his first “cry” for help. He liked to be held super tight and no gentle patting on the back to burp him would do. You pretty much had to beat his back or else he would cry harder. Oh my gosh, I can still hear the crying! I remember thinking ‘everyone told me this baby would be the easiest!’ Hmmm, you wanna talk about being frustrated or filled with self-doubt — I was going through every emotion possible! I could not for the life of me understand what I was doing wrong. I felt like a first time mom. And when you aren’t a first time mom this can be a little scary…okay a lot scary!! I remember quite well asking my friend and John and anyone else who was around him at the time “does he look ok, does he seem ok to you?” Something wasn’t right and I knew in the very pit of my stomach something was wrong! I didn’t know how to express this because outwardly Jake looked ‘normal’ and he was meeting his milestones pretty much on time. So I thought it was me…I thought I was just overly anxious, irrational and very paranoid. I can’t tell you how many times when I was alone I would think about this — I would try to make myself relax and remain calm. I tried to tell myself it is all in my head; the baby is fine. I really did think it would be easier but it was the total opposite…it was hard!! When we took Jake for his first check-up I asked Dr. H. if Jake looked okay; I asked him if there was something wrong with him. I explained to our pediatrician that I just felt something was off but when Jake was examined everything check-out fine with the exception that he probably had colic. Okay, so that is what was wrong…we switched formula, tried feeding him differently, well, we tried everything. Nothing we did seem to comfort Jake or ease my fear. At each appointment I would ask the same question ‘Does he seem okay, does he look okay, something seems off?’ And each visit I was reassured that Jake was fine. Like I said before Jake met most of his first year milestone’s, he sat up on his own at 7 months, crawled at 8 months, pulled up on his own at 9 months and was walking by the time he was one. Jake ate well and we used to joke how he never got full; he would want to eat and eat all of the time. Since he was meeting his milestones I just put all of this on me, I really must be an over-protective mom who might be a bit crazy. Now fast forward to when Jake was 18 months old; Jake wasn’t talking or even trying to talk. People would tell me that boys talked later than girls so I had nothing to worry about. But here’s the thing, I had 2 boys who talked at this age. They would at least say the simple words like mama, dada, etc. Jake said none of these things. Jake made the “cooing” and babbling sounds but that was about it. I knew I had to figure this out. I had to know if I was just being paranoid or if something was really wrong.
At 18 months I called our local early intervention services here in TN and set up an appointment to have Jake evaluated for speech. They came to my house, did the full evaluation and when my case worker came back with the evaluation report I wasn’t totally dumbfounded. This may sound odd to some people but when the case worker was going over the report and kept saying severe delay in speech, severe delay in motor skills and well let’s shorten this by saying severe delay in everything…I was happy. Okay, not the kind of happy you would think but this meant I wasn’t crazy, that I wasn’t paranoid and it meant my gut instinct was right. We immediately started speech and developmental therapy and a couple of months later added occupational therapy and behavioral therapy. By the time Jake was 2 we had so much therapy going on I began to feel like all we did was therapy.
In the spring of 2011 we met with our case worker to review Jake’s progress. I had been thinking Autism but never said the word out loud. I told her he was making great progress but I felt something was still wrong. She asked me what I was thinking and I quietly whispered the word…Autism. That was a scary moment for me because I didn’t want this diagnosis but it would explain a lot of Jake’s behaviors. Funny thing is, I wasn’t the only one thinking this, my best friend had been quietly thinking this as well. My case worker set up an appointment for Jake to be evaluated by a neuropsychologist and a developmental pediatrician. Jake was evaluated and on June 25, 2011 he was officially diagnosed with Autism Spectrum Disorder and Developmental Delays. I remember feeling relief but saddened too. It explained everything, it explained I was doing everything right, it explained I wasn’t crazy so I was relieved. Saddened with the fact that my baby had Autism, saddened that he would have a long uphill climb, saddened that he wouldn’t be ‘normal’.
But here we are a little over 2 years later. Through 2+ years of speech therapy, Jake can talk, sing and is reading on a first grade level. Through 2+ years of occupational therapy, Jake can now cut with scissors, hold a crayon and put on his socks. Through 2+ years of behavioral therapy, Jake is potty trained, he can eat with a spoon, he can follow directions, he doesn’t cry when you speak to him, he will say hello…I could go on and on but you get the gist of how much Jake has progressed! As a family we have learned a lot as well; we have learned how to help him. We have learned to choose our words more carefully when describing Jake or other children; we don’t say ‘normal’ anymore because honestly what is normal? We say typical. And the “R” word is not allowed in our home, it is a degrading and an unhealthy label; our son, Jake, has special needs. One of the most important things I have learned as an individual is to work with Jake’s strengths and help him achieve his goals and then some. Our goal as a family isn’t to work with Jake to make him a typical boy but to help him learn, grow and become a happy individual. Isn’t that what we all want for all of our kids?
The road we’re on isn’t any less scary than it was 2 years ago. But now our road is marked and well-lit, we have the tools to help us navigate through the scary parts and we can see our way much more clearly.