Report Cards, IEPs and Disciplinary Reports, Oh My!

March is over, thank goodness! While many celebrated with pranks, and jokes, I celebrated April 1st with a big sigh. March was full of ups and downs. Thomas was given new letters for his alphabet soup, which has been very good for me facilitate getting services that are a better fit for him, but they also left us with some unanswered questions. We renewed his IEP, and agreed that he needed even more evaluations from the school. Thomas has had some great successes at school, and he's had some old "bad" habits show up and he's developed a couple of new ones. And finally he was given a place in the coveted social group at the Autism center that he was evaluated at in Feb.

So the new diagnosis of ADHD and anxiety has answered a ton of questions for us, but it has also left us with a few new ones. When handed something new, like a new diagnosis, my first coping mechanism is to turn to research so I have been reaching everything I can on children with ADHD. In  my reading I see so many things in Thomas that I was seeing as red flags for Autism, and I now understand why autism is often misdiagnosed as ADHD and visa versa. The overlaps in social behavior are amazing! So it potentially explains a huge number of Thomas's social integration problems. We are still on the waiting list for another set of testing to rule out another diagnosis (that I am intentionally being vague about,) and we will be resetting for ASD in February 2014 because it couldn't be eliminated as a diagnosis.

The other good that came out of the ADHD diagnosis is that the care team at Thomas' school seem to, all of a sudden, know what to do to help him. Instead of feeling like they were at a loss because his previous only diagnosis was SPD, it's like a lightbulb lit for them and they all of a sudden get it. "Oh, ADHD, I know what that is and we know what to do for that." As frustrating as that reality is, it is a reality. They know what to do now, or at least what to try and so there is this flurry of activity surrounding Thomas getting the new services in place at school.

This leads us to the IEP. Thomas' was up for review in the middle of March, and when I sent the
report from the Autsim Center's evaluations of Thomas the special Ed team had to rewrite the entire IEP. In doing this, and in reviewing the report (which was 30 pages long and extremely detailed) the
school psychologist has decided to re-evaluate Thomas in several areas. These areas include social, behavioral, academic, emotional, health and communication. These results will effect his IEP again. So I am 98% sure we'll have at least one more IEP meeting before school end. It will be very interesting to see how these changes affect Thomas' behavior at school. One of the changes that we've seen is that Thomas is hitting more in school, but instead of writing him up for it, his teacher has arranged classroom transitions around the behavior. This seems to be helping.

There was one incident that I found a bit upsetting. Thomas got angry in class and ran out of the room. His teacher found him within minutes and had him go to the office to cool down. He had a conference with the principal where she explained why he needed to stay in his classroom, mainly safety reasons. And then she wrote him up for it. Yep, a disciplinary report because Thomas needed to get away from other people so badly that he ran away from the classroom. He grabbed a chair and put himself into the corner in the hallway. The principal told me over the phone that it was several/many minutes before he was found (his teacher said it was 2-3 tops.) so she had to write him up. Sigh. Now I understand the safety issues, I understand having to go to the office. I do not understand a write up. I think that him walking away instead of hitting should have been commended, instead it was punished. That is a hard one to explain to him.

Thomas being in social groups at school four days a week is a very good thing. The more social interaction "training" he can get the better. There are two different groups, one for friendship and one for anger management. On too of that, Thomas was given a place in a social group at the Autism Center. He had his observation a couple weeks ago, in which he cried and sobbed for the first hour of the 1.5 hour session. He did pull it together at the end, and had been asking to go back ever since. He really loved the kids and the therapists once he let himself relax enough to get involved in their activities.

Yesterday was his first session in the social group that will meet once a week, for 1.5 hours. He had a blast, and the were no tears. He was so happy to see that many of the same kids were in this session, so he felt comfortable from the beginning. I really think this group will be good for him, and I'm guessing he will participate in several sessions.

This has been a whirlwind of a post, and that even goes with the last couple of weeks. A lot of it is a blur, I am definitely still trying to wrap my brain around all the changes. I can only imagine what it must be like for Thomas, who doesn't deal with transition well.

One of Those Days

I'm sitting here in the post bedtime quiet, listening to the fish tank bubble, smelling my hot tea, and thinking over the day. Days like today are the kind of days that make even the really great parents feel like they're missing something. Today was one of those count down to bedtime, wonder how you're going to make it through, begging for mercy kind of days.

It all started innocently enough, Thomas woke up too early, was sent back to his room until the "bunny clock" told him he could get up (turns out it wasn't set right,) only to return a few minutes later to announce that the numbers said 6:53 and that should be late enough to be awake. He of course was right, so I let him take his iPad to his room, his favorite "big boy weekend" thing to do, and he let me sleep until 9am. Unheard of!! I thought, what a wonderful start to the day!!

We went downstairs for breakfast, to watch Saturday cartoons (on Netflix) and snuggle on the couch. Josh got up and ran out for coffee and pastries, and we seemed to settle into our usual Saturday routine.

I did, however, notice that Thomas was a bit over stimulated. So we decided to turn off the cartoons for a bit before his swimming lesson. At noon-ish, after his pastry and apple juice we headed for the swim club. This is where our day took a 180, and we all spent the next 7 hours on the verge of crying, panic, or just plain melting down. Thomas decided that his swimming goggles didn't fit, were broken, and just plain were the world's largest torture device EVER. Of course he wouldn't get into the pool without them either, so his first meltdown of the day ensued...Full blast, tears, hitting, pulling, screaming, fighting meltdown. It was painful as his parent to watch, and I'm sure confusing for his swim teacher since Thomas is usually so excited about his lesson. We decided to take Thomas home, and try again later since his wonderful teacher offered us a spot later in the afternoon.

As we were leaving the swim club Thomas said he was hungry and wanted to go to get breakfast, so we headed to the small community center near home. The have a nice little cafe that has hash-browns that Thomas loves. He ate, and asked if we could go look for new goggles to replace the ones that were "broken." (they aren't, I assure you.) We agreed since we thought it would help give him the reassurance that he needed for his second try at swimming later in the afternoon.

We went to the sporting goods store and Thomas tried on EVERY SINGLE pair of goggles for kids/youth that the place had in stock, and several models he tried on twice. None of them lived up to Thomas' expectations, or particular sensory needs. In hindsight, I should have realized that Thomas was practically wearing a neon sign that read, "Not Going to Happen Today!!" since he was hiding in racks, seeking a quiet place and cringing and crying with goggles that just didn't "feel right." I don't know if it was my stubbornness, my own anxiety, or what, but I couldn't read him today.

I called and cancelled the "second chance" swim lesson and we headed home to just try to relax for the rest of the day.

I must have lost my mind, but 2 hours later I got the "brilliant" idea to take Thomas out again. This time to the game store and comic store. He again was all over the place, running, not listening, touching everything. And again, I found myself on the the edge of my own meltdown. My heart was racing, I was sweating and basically entering panic attack zone. So I made the decision that it was time to go home. On the way, we decided to stop for take out for dinner. We sent Josh in to get the food, and Thomas lost it! He wanted to go in too, but I knew that for my sanity, and his safety that it would be a bad idea. Do I sat in the car while he told me how much he hated me, how much of a bad mom I am, etc. Thankfully it was short lived, though a bit painful since he was kicking me in the back through the seat throughout his meltdown.

We spent the rest of the evening eating dinner and encouraging quiet independent play. He did well at bedtime routine, and fell asleep quickly. I think the day was as exhausting for him as it was for us. I'm glad that he's finally resting, that the day is at a close. As a very good friend told me today, "tomorrow is another day." I hope tomorrow brings 10 times more joy and 100 times more laughter. After today we could all use it.

Social Group

Now that we have had a few days to process and absorb the new letters in Thomas' alphabet soup, we are starting to move forward. First step, Social Group.

This isn't Thomas' first venture into the world of social group, he did a 12 week social group program at his OT's office last fall. It ended with mixed results. He liked the kids well enough, but I don't think that he actually learned much in the group. He didn't come out of it more able to deal with his social shortcomings, or more able to use his strengths. He had fun, so it wasn't a complete waste of 3 months.

This time I hope will be different. I feel that the clinic he will be doing his group in is more equipped to help Thomas find his positives and build off of them. He will also, most likely, be in a group of kids who are slightly older that he is. This is good for two main reasons. First, Thomas is huge! He is 4 feet tall and weighs 67 pounds. He is as big as most 8 year old boys, and he plays hard. So he can be very intimidating to kids his own age. The second reason is that he is very smart, and his vocabulary use alone can separate him from his peers. He uses big words, and other kids his age just think he "talks weird." So between being intimidated, and not understanding him when he talks, Thomas often finds himself left out when he's with other 6 year-olds.

Next Monday will be Thomas' first group, and it will be an observation to see which group of kids he'll fit in best with. Which one he will both be accepted in, but also challenged by. This part of the process is also very different from our last attempt at social group. It won't be a case of, "we have enough kids of the same age," but instead, we have the right group for Thomas.

It's an amazing feeling to be moving towards finding the tools Thomas needs to succeed. I know he has a great future, and it's my job to make sure that he has all of the support he needs to make his dreams come true. He WILL be the engineer/inventor/father/man he wants to be!

Alphabet Soup

Well today was the "review of findings" for all the testing that Thomas went through last week. (He was being tested for Autism Spectrum Disorder.) It turns out that he is a mystery wrapped in an enigma. The doctor even presented Thomas' case to the diagnostic board at the autism clinic because he falls into an unusual diagnostic category. He falls under "has ASD and doesn't have ASD" so he shows some strong characteristics, but he shows enough non-ASD characteristics that they cancel each other out. It's very confusing. Thomas will need to be reevaluated in 12 months.

All of this might have left us right where we were, but it hasn't. Thomas did indeed have his alphabet soup added to. Not only does my sweet kid have SPD, but today we added ADHD and Anxiety Disorder NOS. (not otherwise specified) 

The part of this that is so reassuring is that the doctor we've been working with has been so great! He is knowledgable, helpful, fantastic with Thomas, and amazingly receptive to anything My husband or I have to say. Included in the 30 page report on all the evaluation results is a road map of where we go from here, suggestions for treatment, suggestions for Thomas' IEP and specific ideas on how to help Thomas meet his treatment goals both in school and at home. He has even offered to attend Thomas' IEP meeting if needed.

The first step will be enrolling Thomas in a social skills class at the ASD clinic since besides attention span, social skills is where he struggles the most. Because his vocabulary skills are so advanced, he will be put into a social skills class with slightly older kids. I think this will be great. 

We will also be discussing therapy for Thomas to help him deal with his anxiety problems, and possible medications if needed for the ADHD (though we plan on trying behavior modification first.) 

Also, there is another possible round of testing to go through, but we are waiting to hear about that.

All in all, I think Josh and I are comfortable with the information that we have, and the help that Thomas will receive because of it. We find ourselves back at the beginning in terms of new diagnoses, but one look at my kiddo reminded me that he is the same boy, no matter what his alphabet soup says.

Evals are done, now we wait

Like the title says, the evaluations are done and now we wait. There were two appointments, one for cognitive testing and one for diagnostic testing. There was a ton of paperwork: forms, questionnaires, and observations. And now we wait. The doctor still has a few phone calls to make (to Thomas' school, and to his OT) and has to tally scores, and write the report, but we should have some answer next Thursday.

Here's where I admit that I have no idea which way I want this to go. On one hand, and ASD diagnosis would open a ton of doors for help at school, and therapies that we hadn't thought of. On the other, it would mean that our son has Autism.

Now, don't get me wrong. An ASD diagnosis isn't the end of the world. If  Thomas qualifies for diagnosis, he is very high functioning, and a diagnosis doesn't change who our son is. But it's still scary.

I'm equally scared that he doesn't qualify for a diagnosis, and we will be back where we were last month, with our son struggling more than ever and we still have no answers. No additional help.

At the diagnosis evaluation today the doctor tried to explain a few of his preliminary findings, and I literally only heard about every third word. Well, that's how many I understood anyway. It's not that he was using a lot of big words that I don't know or anything like that, it was that my brain had shut down because of panic. Will he, won't he? Does he, doesn't he? I heard "Thomas is extremely bright, no Thomas is exceptionally bright." When I was asked if I though that Thomas had trouble making friends because he didn't understand the social cues of the other kids, or was it more that he didn't have the attention span to wait around to get answers to questions, etc, my answer was "yes." Both are accurate. But every question I answered, I had the thought in the back of my mind "don't screw this up...you want/don't want this diagnosis." it's no wonder that the past two days Thomas and I are both mentally exhausted!

The next week is going to be very, very long as we wait for our review of findings appointment. In the meantime, I am trying to think of questions, or additional observations to share with the doctor. I love that he encouraged me and Josh to email him over the next few days with additional comments and/or questions. It will give me a chance to calm my brain, and think clearly about any important information I left out.

home again, jiggity jig.

Thomas and I just returned from a weekend getaway, just the two of us. We went to visit both sets of grandparents, and it was wonderful... Mostly.

I am 9.5 weeks post op from a major surgery, so I am not back to my full energy level, and still feel some pain if I overdo it. The pain wasn't a problem, but holy cow, I forget just how much energy it takes to solo parent Thomas. I must remember to bring scotch and flowers to my husband after my next momcation!

Thomas did pretty well actually. His stimming behaviors picked up a lot during our visit, and by this morning his impulse control was pretty shot. His verbal stimming (a quiet click at the back of his throat)  returned the moment we walked into his grandparents house, and I think it was mostly a self soothing technique. He was pretty unsure of the dogs when he walked in and they were barking, but he quickly warmed up to them. The clicking continued all through the visit, and when I asked him about it he just told me that it felt nice.

He did fairly well with looking at people, momentarily, when talking to them, but he did avoid eye contact. He is becoming really good at faking it. I'm not sure if that's a good thing or a bad thing.

Thomas blew his grandpa away while they were playing a puzzle game together. Thomas is an excellent problem solver, and so does really well at those types of games. He reached Master level before he really needed much help at all.

We then spent 1/2 a day at OMSI with my parents. It was wonderful to watch Thomas experiment with things there, though he was very impulsive, and didn't spend more than 20-30 seconds per exhibit, save for a select few. The Mythbusters exhibit was his favorite, and it's where he spent most of his time.

All in all, I think it was a great trip. I'm so glad that he and I got to spend some one on one time together. I look forward to our next adventure over Spring Break... Maybe we'll try hiking again.

First Meeting with the Autism Center

Today was our first meeting with the Autism Center that will be doing Thomas' ASD evaluation. The meeting was for Josh and myself to meet the doctor, go over our questionnaires, and discuss out main concerns. The doctor was so warm and receptive, and we felt really comfortable with him, and with our decision to go with that center.

The next part of the evaluation starts next Wednesday. Thomas will have two 1-hour appointments over two days, one for cognitive evaluation, and the second for diagnostic evaluation. After those are done, Josh and I will meet with the doctor again to go over the results. A diagnosis for Thomas will be contingent on at least one other set of testing that we will have done elsewhere, but we will be heading in some direction within the next couple of weeks.

It is both an exciting and scary time in our home right now. Adding to Thomas' alphabet soup wasn't something I wanted to do, but in order to get the help he needs we have to have the correct diagnosis. I hate the idea that he will be labelled for the rest of his childhood, at least, but it is necessary.

Scouring the Interwebs

This morning has been full of me preparing to really buckle down with this whole "writing a blog" thing. I've been wanting to do it for over a year, and I have, sporadically. I think I finally have the time and ambition to realize that goal.

So, I have spent my morning looking at all the blogging conferences happening this year, reading other blogs, looking at styles and ways women have gone before me have done all this. What I'm seeing is both daunting and exciting.

Much like in my parenting, I have so many doubts about my ability to write well. Add to that my chosen subject, my special needs child, and I am very nervous. From my previous entries you know that Thomas (T) has SPD and we are now seeking an Autism diagnosis. Much like the journey to parenting him well, writing this blog well is scary, and at the same time exciting, and satisfying. It is definitely a labor of love, and one that I am so excited to embrace as I have being the best mom I can to my special needs son.

There is going to be a whole lot of stumbles, lots of trying and failing, and hopefully some successes along the way.

I suppose I am starting a new journey in more ways than one. A new journey to better help my son. A new journey to educate my friends, family and a few strangers about Thomas' life. Maybe the most exciting journey of all, the one where I do something for me. Where I write about all of these things instead of keeping them bottled up.

Wish us luck!

It's time.

We've made a pretty big decision as a family. We decided that it's time to have T evaluated for ASD (Autism Spectrum Disorder) and if we're really honest, it's likely past due. T is six and has been in OT since 3/2010 for his Sensory Integration issues. As he gets older, these issues have changed a lot, but show no signs of going away anytime soon. On the contrary, some of his sensory issues have actually gotten worse. To be fair, we have not been as good as we should be at home with his sensory diet, and we let him have too much screen time... I could go on blaming our parenting for days.

What has led us to seek further evaluations hasn't really been the sensory issues though. Being mainstreamed into kindergarten from a developmental (read: special needs) preschool, has shown us how different socially he is from his typical peers. We have been watching closely over the past several months, and what we are seeing is a child who doesn't know how to read people, and thus has extreme problems connecting with them.

T has been having problems with aggressive behaviors at school. When we heard about the hitting and shoving that he's been doing, we talked both to him and to the Behavior Intervention person at his school. It seems that he has been feeling threatened by the other children. He says that the looks on their faces scare him and that he's afraid that they are going to "attack him and send him to the ER" so he lashes out first. A preemptive strike, if you will. We've noticed this same reaction at home, and the fact that he only seems to be able to accurately read a happy facial expression. Everything else looks angry to him.

T doesn't seem to have any real friends at school, and the one or two kids that he does play with, often get intimidated by his aggressive behavior, or his very intense need to have them play only with him. So he is very often left feeling like he has no one at school. The Behavior Intervention person at his school points out that he plays alone most of the time, and T tells us that he has no friends. He says that every day when he walks into his classroom there is a chorus of "uh-ohs" from his classmates, and that he feels confused and sad.

Another thing that strikes us as being different from his peers is his inability to join in imaginative play of other children. He has a great imagination when he is playing alone, but he does not seem to be able to extend that to include imagination games that other kids have started. He will point out that what they are doing and/or saying makes no sense, and that it's just pretend...Or more accurately, "just fiction."
For example, he had a playdate with our neighbor and she was describing an altercation between her stuffed animals to see which one got to come on the playdate. They "wrestled" for the honor, and the winner won the right to come to the playdate. T just looked at her, and said, "you know that's impossible don't you? They are just stuffed animals and can't fight. You can make them roll around, but they didn't fight. That's fiction," It was a strange interaction. He was absolutely unable to suspend disbelief long enough to join in the fantasy. I've seen this behavior many, many times since then, and I'm guessing that if I had been paying more attention I would have noticed it before too.

There are several other reasons we believe that T is on the spectrum, though very high functioning. These are just a few of the things that have stood out to me in the past couple of months. We do not think that getting a diagnosis will do anything more than open up more tools to use to support T, mainly at school.

The evaluation process is daunting, but the result will be what it will be. The most unfortunate part is that we will not have finished the evaluation process before we have to redo T's IEP. I'm hoping that if he does receive a diagnosis that we can make changes to the IEP as necessary to support the new diagnosis, and get him the extra tools he needs for him to not merely squeak by at school, but to thrive there. So, for this reason, we jump into the unknown territory of the ASD evaluation process.

Feeling lost

There are many times in a parent's career that they feel lost, unsure of what to do next. I am going through one of those times. T is struggling so much emotionally right now, and I have no idea what to do to help him. He is going from my sweet little boy, to an angry, mean kid in seconds. He goes from being my happy go lucky kid to a puddle of tears and shakes in the blink of an eye. It's like someone flips a switch on him, the change is that quick. There are a lot of transitions happening now, the end of preschool, saying goodbye to friends, preparing for summer, and then kindergarten. He's going through a growth spurt, so his emotions are trying to grow with him. He feels out of control of what is happening to his routine, to his body, and emotionally. You can see fear in his eyes when he's angry, as well as when he's sad. His anxiety is palpable at times, and it breaks my heart. Last week I spent an hour trying to comfort T as he sobbed in my arms. He was missing my grandmother who died 1.5 years ago. They weren't super close, but her death is the only experience he really has with losing someone. As he sobbed, and shook, I held him and tried to comfort him. I could feel his pulse racing, and hear the panic in his voice as he asked question after question about his GG and how he could ever talk to her again. His sadness and grief had turned into a panic attack. That was the night that I realized I was helpless, that I had no idea how to help him. Until this week he has been holding it together at school, and then coming home and losing all control. Today, however, was a different story. He went from smiling and laughing on the bus to crying and screaming, and back again with no known cause. He was super emotional during school, asking for me, for his "Geego" (security blankey)and his frustration level was super high. When he came home, he was sweet until I had to say "no" the first time, then there were tears, thrown toys and stomping feet. When he calmed down from that he cried and cried about how he wouldn't be able to take his bird with him when he was a grown up and moved out. Those are just a couple examples of what life for T has been like the last two weeks or so. Granted, he has been able to appropriately handle his emotions during school until today, but he is obviously miserable. And I, his mom, don't know how to help him. The fact that he is struggling so hard to hold it all together through school, and now having trouble with that, makes me very nervous for kindergarten next year. Will he be able to make friends even if his emotions get out of control? Will he be able to handle full day kindergarten? Will he be labeled "the bad kid," or the "baby." I am scared for my son and I have no idea where to turn, what to try, or what the answers are. Today I am lost.

The good times

Life with my 5 year old, SPD kiddo can be tough...

But then there are the good times. The past two weeks have been so smooth, that I imagine this is what it's like to have a neurotypical kid. T has been so great! His body is organized, his focus is sharp, he's flexible and generally happy.

It's times like this that remind me that all the hard work we put into his therapies is worth it. The exercises, the weighted vest, the making special meals, and the focus on games that improve his SPD symptoms are all working.

The last two weeks I have received nothing but good reports from T's teachers, his OT and his PT. At home he has worked so hard on being flexible when his schedule has to change, and very honest when he needs it to stay the same. T has been very vocal about what will help him keep "his engine in the green," and we have worked as a team to make those things happen. He has been patient and controlled when his needs had to wait for a few minutes, and I have been very careful to make sure that I take the time to help him. It's been a partnership made in heaven.

At school, T has been flexible with change. He has participated in activities that he usually tries to fight, like music class, and he has been kind to his friends. T has been following directions, and has volunteered to help around the classroom.

At OT/PT, my usually unfocused, sensory seeking boy has been calm, and focused on the activities. He's been respectful, and eager to work hard. There has been more improvement in both therapies in the last two weeks, than there was in the past two months. He has come out of the therapy office smiling, and feeling extremely proud of his work. It is an awesome change.

At home, T has been wonderful. He has been happy to play with toys by himself while I do work around the house. He has been a wonderful host to a few playdates, and even politely ended the playdate when he was too overwhelmed. He has taken quiet breaks when he needed them, and taken jumping or spinning breaks when those feel right. There have been fewer arguments, and he has even tried a few new foods.

Sometimes it feels like we take two steps forward and three back, and it's so easy to get stuck on the hard times. I am so thankful that, this time, I am able to step back, relax and enjoy this period of calm. I hope that this break will leave T and I more rested and prepared to deal with whatever challenge is next.

"I Hate Myself!"

There is little harder to hear than the person you love most saying that they hate themselves. It breaks my heart to even think that my beautiful, smart, and sensitive son feels this way sometimes. I know we all have our down days, but a 5 year old should never feel that way.

This is our new struggle.

T has been saying this the past couple of weeks, mainly at school. When I ask him about it, he says that it's true. He "hates" himself, and that he's not as good as the other kids in his class. He is really struggling with writing, and he sees his friends (both in school and out) able to write better than he can. 

The thing is, it's not true. T goes to a developmental preschool where the other kids are of varying abilities. He is by far not the worst writer in his class. heck, there are children in there that can't hold a pencil. But he doesn't see this. He only sees the other students who can write their names on just one line, that they can form numbers on their paper, that they can draw the shapes they are asked to draw. 

He is very discouraged, and doesn't want to practice at home. He says that he's shy, and that I'll be upset that he can't write well. 

I've talked to his OT and she will start working more closely on his writing skills. And I know his teacher has been working closely with him.  

His teacher is also in very close contact with me, she emails me every afternoon to let me know how T was at school. He has been unusually emotional lately, but I chalked that up to his recent growth spurt and the return to routine after the holidays. I'm starting to worry that there is more there, I'm starting to worry about his self esteem.

I am realistic that this is just the beginning of the struggles he will face in school. That there will be many more things that will make him feel like he is not "as good" as his peers. What I'm trying to figure out now is how to build the self esteem he needs to know that he is just as good as his friends, no matter his abilities. I try to remind him of the things that he does really well. For instance, he is extremely athletic, he has an amazing grasp on the English language and communicates at the level of a 7-8 year old (if not higher now) and he is so compassionate.  

My son is developing the self awareness to know that he is different from many of his peers. He has told me about how some kids are afraid of him, that he doesn't understand the rules to the games kids his age want to play, and that he feels different. I think my challenge as his mother is how to build on the things he does well, and to support him when he needs to work harder on the things that he falls behind in. Creating a balance for him, so that he can build a healthy self image. 

How do help your child when they realize they are different? 

Trying Out Best Through the Holidays

Holidays are hard. I think they can be hard for adults and children, both typical and special needs. With the excitement, the magic and the wonder, comes the frustration, the over stimulation, and the lack of routine.

We live 3 hours away from where we grew up, and where our families still live. The good news about that is we get to see both sides of the family during holidays. The bad part is that we're away from home, and routine often for 4-5 days. We're also away from many of the sensory diet tools that we use. The trampoline is just too big to bring, for example. Both grand parents houses are not exactly 5 year old friendly, but especially when that 5 year old has little to no impulse control.  There are breakables, decorations, dogs (that are shy of kids, especially boisterous ones) and not a lot of space for unwinding time.
This year we have decided to stay at a hotel. I think it is going to be great to have a home base where we can rest and try to meet some of T's needs. Though we won't have some of the bigger sensory tools we have at home, we will be able to bring some of the smaller tools and have a nice quiet place to use them. I'm also looking forward to better sleep for all around, black out curtains are a must for T! I plan on bringing either his play dough or his bean box for some tactile stimulations so that his urge to touch everything in sight is numbed a bit.
Some other tools that I am glad we have this year are T's headphones, and chewies. They will be huge help, especially when we're in the loud and crowded environments that the holidays seem to mean for us. T gets very overstimulated when subjected to loud/busy places and being from very large families, that's basically what we have for him... From family get togethers in small houses to Christmas Eve breakfast at a wonderful, though crowded, restaurant. This year I'm hoping these tools set T up for success rather than several days of sensory overload that borders on panic.
In the past, the easiest part of holidays with family has been the several hour car ride to and from our hometown. I'm hoping that this year is the start to some new traditions, and less tension.

A visit to the ER

Taking any kid to the ER to get a cut mended is stressful, taking an SPD kid to the ER is REALLY stressful. 

Today T was invited to a play-date at Chuck E Cheese, one of his favorite places in the world. It is his own personal heaven, he loves the games, the playground, and the food. He never seems to feel out of place in his SPD "gear" and he plays so well with others there. Anyway, today we had been there for a grand total of 10 minutes when he ran head first into the "Deal or No Deal" game machine. He hit it so hard that he was knocked down to the ground. At first I though he just had a bump, but my friend asked me if he was bleeding. Sure enough there was blood coming from a cut, about an inch long, right above his right eyebrow. 

When he saw the blood he freaked out! Screaming for his blanket, which of course I forgot (way to go mom,) and that he didn't want blood, an ice pack or stitches!! You see, he got stitches 2 years ago when he bit through his lip in a fall, and he's never forgotten it. Every time there is blood he is convinced that there will be stitches. 

I took my screaming, bleeding ball of 50 pound kiddo into the bathroom to see if I could clean him up. Sure enough, when I got some of the blood cleaned up, I saw that the cut looked deep and the edges weren't coming together. He probably needed stitches, or at the very least butterfly bandages. 

When I told him that we needed to go to the hospital he lost his mind. Screaming, and clinging to me, T begged me not to take him to the hospital. He promised that he felt better, and that he was ready to play. Never mind the blood trickling down his face. So off we went.

In the car T refused to use the ice pack, no surprise there. Cold is painful to him, like burning, and sharp pain at once. This was to be a theme for the afternoon.

By the time we got to the ER (about 10 minutes) T was completely calm and was almost excited to get his cut fixed. Though he asked everyone he saw if he needed "a stitch." They took him back and started cleaning him up. When the nurse asked about his pain he told her, "what pain? There's no pain, just blood and a cut." They told him how brave he is, but I don't think they realized that kind of pain doesn't really register for him.

They decided to numb the cut with lidocaine gel, which T was fine with until he found out that they kept it in the refrigerator. Apparently for most people the cold gel doesn't hurt as much as room temp gel, or something like that. Ms. Nurse put the gel on T's cut and he screamed, "Ouch! The cold! It hurts, too cold!!" She patiently explained to him that it was "just cold" and that he was okay. I informed her that he has SPD and that, to him, cold is incredibly painful. That's when I was reminded again how few medical professionals have ever heard of SPD. To her credit, she listened and made a comment about how she would have to look "that" up. 

After two more cold gel treatments (and screaming jags) it was time to clean the cut and see what the treatment would be. T did really well until he was told that all he needed was to have the cut super glued. He did NOT like the prospect of anyone gluing him. He cried and screamed and struggled to get away. Afterward he told me that he was scared of the glue because he thought that it was going to be in him forever, and that they were going to use Elmer's glue. Then the smell of the super glue made his skin hurt. 

Minutes later we were given our discharge papers and T was so anxious to leave that he walked out of the room with only his Crocs and underwear on. (he had been in a hospital down to keep his clothes from getting bloodier.)

Right now he is proudly showing off his hospital bracelets and his cut with the "magic, invisible bandaid" on it. 

Not only did my kiddo get fixed up, but he left happy and we may have spread some SPD awareness. Not bad. Not bad at all.

Where is the Balance?

How does a parent know when it’s time to back off from a certain therapy? That is the question I find myself asking right now. T is doing weekly private OT, weekly OT at school, ILS therapy at home and at his private OT, he will be starting PT in the coming weeks and tomorrow he is having a functional vision test to see if he would benefit from vision therapy. How much is too much?

T is in his second year of a developmental preschool, and he is also in a kindergarten prep class on Wednesdays, so he is in school from 8:15-11:45 five days a week. He comes home from school so tired that he has been refusing (to the point of complete meltdowns) his ILS therapy. We have tried letting him have a quiet time break after school, we have tried doing ILS in the mornings before school, we’ve even tried weekend only sessions. Now I’m trying to figure out if the benefits are actually worth the fight. It was certainly beneficial over the summer, but with school and other therapies, I’m not so sure.

T will be starting PT soon, so that is another thing added to his schedule. I am really thinking that taking a break from the ILS until summer might be a good idea. That way he is getting all of his structured therapies outside of the home, and the therapy he gets at home is on an “as needed” basis. I want home to be a relaxing place for him, where he can feel free to rest when tired, jump when he wants to jump and do therapy activities when his body needs them.

My sweet little boy has asked me on several occasions, “why do I need so much therapy, what is wrong with me? Why am I broken?” It breaks my heart to know that he thinks of himself as broken, and the fact that he has several different therapies makes him feel that way. I try to explain SPD to him, and explain that he’s not broken, his brain just works differently. This sometimes helps and sometimes he looks at me like I’m full of it. He just knows that most of his friends, well the ones outside of school anyway, don’t have to go to OT, or have to wear headphones and do “exercises” at home. He feels different from his friends, and that bothers him.

My struggle is giving up something that might be helping him. How do I make the decision to end a therapy? Does it mean that I’m not doing everything I can to help him, or is it exactly the opposite? I need to figure out what is best for my son, not what is best for me. I need to find out what the right balance between therapy and just letting him be is, and I need to try to do this without causing a backslide in his progress.  I need to let myself do what is right for him without feeling guilty for not doing enough.

Evaluation Time

Last week we received T’s evaluation after 18 months of OT and it showed some significant improvements. It also showed several areas that hadn’t improved at all, and some that had even gotten worse. His OT suggested a few things to try, a PT evaluation, a full function vision evaluation and starting a cognitive program called, “How Does Your Engine Run?”

His biggest improvements were in his fine motor skills. This makes sense because he gets two OT sessions a week dealing with fine motor skills. Once in school and part of his private weekly OT appointment covers the fine motor stuff.  He also improved slightly in the length of time he was able to focus.

Pretty much all of the other issues he has have either stayed the same, or in some cases gotten worse. Now, to be fair, I don’t actually think he’s really gotten worse. Here’s my hypothesis on why he’s showing some sliding in certain areas: now that we’ve had the label of SPD, I’m more educated on what is SPD related, and what is normal kid stuff. So when I filled out the parent questionnaire this time, I was able to provide more complete answers, so in reality, I’ve gotten better at recognizing SPD symptoms. Ones that he has had all this time, but I never included them on the parent evaluation form before.

T’s occupational therapist agrees that this is likely true. She also points out that he is coming up on his 5^th birthday, and is going through some significant changes physically and developmentally. These are often times of regression at worst, and stagnancy at best. We have a bit of both.

I took T for his evaluation to see if he would benefit from physical therapy, and in the 2 weeks since the OT evaluation was done, some of the concerns have righted themselves. Still, he will probably need some form of physical therapy for his core strength and balance issues. He is also slightly behind in his cross body coordination. However, the Physical Therapist only believes that he will need PT on a short term basis of 3-6 months. They believe that with the OT we will see a marked improvement in his gross motor skills.

As for the other sensory stuff, the stuff that has shown the biggest lag in improvement, we will be looking into starting the “How Does Your Engine Run” program in the next few weeks. I still have some research to do on the program, so I will be ordering the book soon. We also have the functional vision evaluation scheduled for next week.

All in all, I am very excited to see what progress T will make in the next 6-12 months with his new tools. I am forever thankful that these tools are available to him, and that he is such a great sport when it comes to participating in all of the evaluations and therapies we involve him in.

Does anyone else use the “How Does Your Engine Run?” program? I would love to hear about your experience!

The Bunny

I’m in love with a bunny. No wait, I’m serious! This magical bunny tells T when he should be sleeping, and when he should be awake. This is vitally important, especially as we head into fall and T’s sleep schedule tries to shift from early, to “Oh my goodness, this time actually exists?” early.

T has two distinct sleep patterns, one for spring/summer and the other for fall/winter. In the spring and summer T goes to bed at 6:45-7am and sleeps well for close to 12 hours. In the fall/winter he starts waking earlier and earlier, no matter what time he goes to bed. We creep to as early as 4:30am some days and for a couple of night owl parents, that is downright painful.

So as summer starts to come to a close, I have noticed this pattern starting again. T was waking 5, 10, 15 minutes earlier every morning and panic started setting in. Frankly, I can deal with anything after 6am, but when I see that time creeping earlier and earlier the dread sets in. You see, I just can’t make myself go to bed at 8:30pm so I am well rested and more importantly, friendly, at 4:30am. So I hit the internet for help.

We are a sleep sharing family (by choice, not necessity) so we have T’s twin bed pushed up next to our king sized bed. So a lot of the methods to get your kid to let you sleep until a reasonable time just won’t work for us. We can’t put a gate on his door and allow him to play in his room until we wake up, his room doesn’t exist. We aren’t willing to let him cry it out until he finally falls back to sleep. But we also aren’t willing to get up at 4:30am. That’s when I found it, the bunny.

The bunny is a “sleep trainer” clock. There is a sleeping bunny and a running bunny, and when it’s time to stay asleep, or in T’s case, quietly relaxing in bed, the sleeping bunny picture is lit up. When the clock reaches the wake up time it lights up the running bunny, signaling to all that it’s okay to wake up mommy and start the day. Luckily, the brightness is adjustable, so kids like T, who need almost complete darkness to sleep, aren’t bothered by a bright night light.

We set the bunny to wake up at T’s normal waking time, which was 5:45am when we bought the clock, and have set it 5 minutes later every 2-3 nights. The method so far has worked like a charm. If he wakes before the bunny, I can remind him that the bunny is still sleeping and that means he should be too. So far it has been such a great visual tool to help T know when an appropriate wake up time is. Since he can’t read a clock yet, the bunny is a life saver.

Before buying the clock, I asked T if he thought it was a good idea. I asked him if he wanted something that had pictures or a colored light that told him when it was wake up time and then we hit Amazon to find the perfect one. T immediately begged for the bunny, and I ordered it that night. We spent 2 days talking about how the bunny worked, and what the reward system for following the bunny’s cues would look like.  The day the bunny arrived T was so excited and told me, “Now I’ll know when to sleep and when I can wake up, I won’ be so tired anymore!”

It’s been a week since the bunny came to our house and he is now waking T up at 6:00am. T is sleeping better, and so am I. I love that darned bunny!

Rough Patch

Sometimes being a mom to a SN needs kid makes me feel like an utter and complete failure. T is in one of many regressions in his SPD and it reminds me that I am probably not meeting all of his needs. It's not that I'm lazy or anything, I just don't know how to help him. We do listening therapy, we do heavy work and outside playtime, and breathing exercises, and, and, and... Right now it just doesn't seem like enough.

Today at OT he had little focus, actually licked his OT therapist, something he hasn't done in half a year, and cried when he had to throw away some used art supplies. Jennifer (his OT) reminded me that he is still far better than he was a year and a half ago, and that these regressions do happen. Usually when there is a growth spurt, or other developmental milestone coming. But it can also be because of a tiny change in routine, or a perceived change in routine.

I know all of this, but my heart still hurts when I see him struggling so much. I still wonder how I can do more, what I'm not doing right, and how it's all my fault. I also find myself losing my patience with him much more often, and the raising of my voice sends him into a sensory tailspin that can ruin an entire day's work. It's exhausting, and times like this I wonder what it would feel like to have a neurotypical child.

Then comes even more guilt, I would never, ever trade my son. He is a bright, sweet, loving boy. He has eyes that melt your heart, and a smile so contagious that it can make me smile even on my darkest days. But I can't help but wonder what he would be like if he didn't have SPD? I am sitting here trying to imagine it, and I can't even come up with a possibility. It's just not in the realm of my imagination anymore. I see children who are neurotypical who sit still at a table, who don't cover their eyes every time the sun is out, who don't crash into their friends, family and especially not walls. I see them, and I can't even picture T the same way. Maybe it's because I've come to realize that T will never be that child. He will always have to work harder to keep his body under control, to fight impulses constantly, and he will always have to work harder than his peers to make friends . I have accepted this, but when there are regressions like he's going through now, it makes me so sad.

What do I wish? I wish I was different. I wish that I could see the progress that he's made in 1.5 years of OT instead of getting so stuck on the back slides. I wish I could see these times as normal, and know that we will come out the other end  further ahead than ever. I wish I was stronger, and that I believed in myself as his mother more. I wish so many things. But I have never wished that T was anyone but who he is, and today, that is my victory.

Please Don't Stare

When I was growing up, I was taught that it is rude to stare. My mother told me that staring is impolite, and it's best to ask her about differences I saw in people. She also taught me that people come in all shapes, sizes, colors, and abilities.

Now, I admit I'm not perfect. I find myself doing a double take when I see a person who is different that I am, or a child who appears to be throwing a tantrum. I don't know a person who doesn't, but I make it a point to avoid staring. If I don't understand a situation I either ask questions, as politely as possible, or I look for the answers on my own when I get home.

This is probably why I am so taken back when I see people staring at my son. I'm especially thrown by full grown adults who sit there and stare with their jaws on the floor when they see my son in his full "sensory wardrobe." I understand kids, but adults should know better.

Granted, T's "sensory get up" is interesting to look at, and he does stand out in a crowd, and I understand a double take here and there. I mean it's not every day that you see a 4.5 year old in what looks like a bullet proof vest and shooter’s ear muffs. (His weighted-compression vest and ear phones) But when you stare for so long that he notices through all of the other sensory things going on, it's ridiculous. And when you actually point your finger at him to show your friends, family, or that stranger next to you, it's infuriating.

This exact thing has happened to us several times. Most recently was at a restaurant, whose mascot is a giant red bird. Since it was close to the lunch time rush, and that place tends to be an exercise in sensory overload anyway, I had put T in his vest and head phones to help him cope with the onslaught of sensory input he was about to receive.

We got seated and T was looking around at all of the pictures, and telling me stories about each of them, when I noticed this man staring at us, at my son. I tried to ignore it, but he just didn't look away. It wasn't like T was screaming, or throwing things (which has happened before.) He was sitting quietly, and really behaving very well.  I noticed the man was pointing at T and whispering to the woman he was with, and that's when T noticed it too. He told me, "mom, why is that man looking at me?" I said something about how he must be really impressed by your behavior. I then told T to wave at the man, when I actually wanted to tell him to wave with one certain finger. The man and the woman, who was also now staring, quickly looked away. T and I ate lunch, all the while the man and woman kept stealing looks our way.

On the way home, T told me that the people "looking at him for a long time, like that man did” made him uncomfortable. I explained that what they were doing was called staring, and that it's rude. I told him that just because someone is different than you are it’s not okay to stare. I also told him that if he ever has questions about someone’s differences it’s okay to ask me quietly about it.

So please, if you see a person, especially a child, who is a little bit different please don’t stare. Remember, it’s okay to ask questions, as long as you do it respectfully (and preferably not in the middle of a meltdown) but it is never ok for an adult to stare and point at a child. Think about how you would feel if someone did that to your child.

When T gets sick.

Let's face it, no one likes it when their kid gets sick, and I'm no exception. Actually the idea of T getting sick scares me, but not for the reason you might think. I actually dread the week after he gets better; when the fever breaks I know we are in trouble.
When T gets sick, he gets really sick. We're talking fevers of 104+ and he barely moves from the couch without being carried. He's my only child, so I'm not sure if what comes next is typical, but I think it has a lot to do with his SPD. After being basically bedridden for a week his senses explode! He has an intense need to move, see, and feel that he becomes unstoppable. He is also probably still a bit sick and he's definitely tired, so you add all of this together and you get a week of sensory meltdowns. Some that are so bad that they scare him and they scare me too.
These meltdowns are not like typical tantrums, they are more. They are more intense, and a lot more violent. T will scream, hit, kick, head butt, bite and basically lose control of himself completely. He falls so deep into the meltdown that if you look into his eyes you don't see anger, you see terror.
This week is one of those weeks. T just got over an almost week long fever, where he was too sick to do any of his OT exercises, or even get off the couch without being carried from one place to the other. This lack of meeting his sensory needs seems to build up until the fever breaks, then it all breaks loose.
Last night was a perfect example of how all the pent up energy manifests; he had his first sensory meltdown in several months. It was so bad that my husband and I had to hold his arms and bear hug him to keep from being hit, kicked, bit, or otherwise getting hurt. As he was calming down he told me that he scared himself. The thing that scared him was that he couldn't stop and didn't understand why. He’s had another such meltdown this morning and I expect about a week of at least once a day sensory meltdowns. So while I hate it when T gets sick, I dread the week after he gets better even more.