A Happy, Sleepless Week.

Last Monday night many of you saw this Facebook post...

Melanie didn't fall asleep until 10:30 last night, at 2:45 she woke up and came into our room looking for us, and after HOURS AND HOURS of trying to get this girl back to sleep, finally at 6:15am so was out. Now I have to wake her up to get her ready for therapy. Today I'm gonna feel like shooting myself.

 

 

 

As the caption says I woke her up for therapy just minutes after taking this picture, and we actually had a really good therapy session!

Lets start with Monday 1/26.  We woke up and had breakfast immediately, then rather than turning the TV on which she always ask for, I told her we weren't going to watch any TV until we changed her diaper and she was dressed.  She turned away and took off to play instantly. She wasn't going to have anything to do with getting dressed. That was at 8:15, over the course of 2 hours she would randomly walk by the TV and turn it on. I would repeat myself... diaper and clothes.  I got a lot done, dishes, laundry, cleaned my room, and BATHROOM TOO; and finally she was ready for clothes and the diaper.  We changed, went to the gym, went to the grocery story, she took a nap, and we only watched about an hour of TV all day.  30 minutes after she got dressed and 30 miuntes while I made dinner.  I was shocked at what a great day it was.  There were NO meltdowns! I have implimented this as part of our daily routine, and its been working to get her dressed... I might also be occasionally bribing her with suckers.

I was so happy putting her to sleep thinking we'd had this super awesome day! Well then we had Monday night which was terrible (re-read caption for a reminder).  So on to Therapy.  I mentioned to Kamber the details of the night we had experienced, because surprisingly Melly was in such a great mood! She was way more talkative, and she even played a little with Kamber. Usually she has nothing to do with Kamber.  While Kamber was sitting in my family room, and we were talking about this aspect of SPD and that I had an epiphany! I was so much calmer than I had been the week before.  I had worked 3 days the week before, and felt totally overwhelmed.  Thus my last post.  But because of the availability of my babysitter I needed to take the week off from subbing, and just focus on being a mom.  Remember last week my final complaint/fear was 'how am I supposed to keep myself calm enough to be Melanie's anchor', well that was my epiphany... stop subbing. When all I have to do it take care of Melanie, and Daniel I can keep the balance.  I'm much more calm, way less stressed.  I'd work myself up not just over working, but also about dropping Melanie of the the sitter, not knowing what Melanie was doing there, most of my stress was anxiety about doing it all.

So we had a great week.  I focused on Melanie, I had dinners made, the house "mostly" clean, and I even had someone over for dinner last week without stressing about it. 

We're still working on the sleep.  I actually had another night like last Monday, and we have had a few in between now and then.  After last night I have decided to put Melly back in her crib.  I did some reading and think its the best thing to do, we're going to try it tonight and see how it goes!

A few of the the things that were recommended for Melanie this week are the following.

*Brushing- The purpose for brushing is used for tactile defensiveness and sometimes other sensory processing challenges.
-Brush her in the morning before getting her dressed, and at diaper changes, and again at night after PJ's are on.
-Brush from shoulder to wrist, hip to ankle, and neck to bottom. If she takes the brush to other parts of her body (tummy) allow it.
-After brushing have her jump 10 times.
 I don't know how or if the brushing is working but she does like it.  She doesn't refuse it, and she sure likes the jumping afterwards.

*Sleeping- These were just some suggestions of possibly ways to help her sleep better at night.
-Try putting her in footy Pajamas, or onesies that is too small. 
-Integrate brushing in to night time routine.
-Do more "heavy work", proprioceptive activities, crashing into mom and dad, being thrown onto the sofa, pushing heavy boxes, carrying heavy objects from one table to another, etc. 

*Tent- Similar to the squish box. The actual recommendation was to put a small pool of beans inside but Melly would very likely throw them all over the place and I don't really want to be constantly picking up dried beans.  Though I do think I'll get her a tent and put some toys inside, or more pillows.

Next session with Kamber is this Friday. I was supposed to be yesterday but we needed to reschedule. 

Hopefully you can tell I am a much happier, but also more tired Kelly this week.   
  

The Hard Honest Truth

This week was hard.  I worked a few days this week subbing, and therefore Melanie missed her occupational therapy with Kamber.  I read up a lot on SPD and learned a lot of overview.  I think I mentioned this last week, but its hard sifting through everything and trying to know what Melanie needs.

One of the biggest things I have heard this week, from supportive friends, have said, Kelly you're such a good mom, and its so great that you got Melanie diagnosed so young.  Here is the honest truth about how I feel right now regarding  that type of statement. Thank you for considering me a good mom, and I am so glad that I have some answers. BUT here is the hard part with that statement...

Melanie doesn't communicate with me. When she has a meltdown, and they're NOT your typical 2 year old tantrum, I basically go hide in a different room of the house and try to block out the hysterics that last for 10 minutes.  I promise I'm not trying to ignore the problem, but because Melanie doesn't communicate, there is no hope of helping her until she is ready for the help. Daniel witnessed one of her bad episodes tonight and didn't realize that I see 1-2 of them a day.  Now that I "know" whats wrong, I look at the tantrum as something sensory induced and frantically try to sift through everything I have read, or that Kamber has taught me so I can calm Melanie down, and help her!  But I feel like all I am doing is failing. Pressure, activity, visual + auditory instruction... nothing works, so I hide until she is ready.  IT IS REALLY FREAKING HARD!

I cry a lot these days, and I don't think its the pregnancy hormones. I think its feeling broken and defeated.  Some days I wish I could go back to a month ago, when I just thought, oh she is 2, and things are hard right now.  A month ago I thought this was a phase, and she was going to grow out of this.  The Hard Honest Truth is... that ain't happening.  We're going to struggle for a long, long, LONG time with this.  Until she is communicating and she can tell me something other than NO, NO, NO, NO, NO, x a million, it seems like everything I try FOR HER, is failing the both of us.

I read this week that Sensory kiddos, often use their parents as an anchor. They have a heightened sense of how we are feeling.  I remember so many women in their late 30's, 40's and 50's complimenting me when I was a new mom, that I kept so calm with her.  Well that Kelly got blown apart when Melanie turned 18 months and the tantrums were something that I couldn't handle.  How am I supposed to go back to the calm mom, who stays in control and doesn't get worked up by their child.  I need to be the calm mom for Melanie, she needs me to be that. But that is hard too.

I love Melanie! I think she is beautiful, and the girl has a smile that turns the darkest of times into eternal sunshine. She is smart, and confident. She is STRONG; she knows exactly what she wants, and even the little kids around her know not to cross her.  Not because she would hurt them, I've never seen her swing a kid, but the scowl she gives says it all.  With all those things said... It is really difficult for me to see pictures and videos posted to social media of kids her age and younger who have no problem transitioning, learning, speaking, or anything else. It is excruciatingly painful to hear mom's vent about their toddler who doesn't listen, or who doesn't share, or who won't let them put their shoes on... I'm having a hard time being sympathetic to those mom's right now; a month ago I was, when I thought Melanie was just in "a phase" and as soon as she could talk, we'd be over most of the issues...  I sound aweful, I'm sorry! Its not that I'm not happy for that mom, or for that child's success, its just I kind of wish I was dealing with your child, not mine. 

If you are reading this and you have a child who's also amazing, keep posting that stuff.  I'm not offended by it, I try my VERY BEST to not look at it as showing off; you are proud, as you should be!  Something to consider though- my sister sent me an article from the The Washington Post, its about the mom who's not bragging, read it, takes 3 minutes.  No one needs to be super sensitive around me, or change what they want to say, I know if you bring up this topic you are trying to give me your 100% support.  I guess I just wish you knew how difficult it is to have a challenging child, not because they want to be, but because they can't help it. 

 Also... I promise every time I cry... I am saying a prayer, asking for strength. I know I'm not in this alone, its just one of the trials that I agreed, once upon a time, that I could take on.  I promise... I'll be fine.

Week 2- Proprioception, and Goals.

I never should have started a blog.  I didn't realize how many people would be interested in reading it. Now I almost feel like I have to inform people on what SPD is, and how its treated.  I'm just not going to be able to do that, to much pressure. There are some great websites about SPD if you'd like to know more for your individual child, but really I'm just going to make this about Melanie.

From the reading I have done, this is a really wide topic, kind of like Autism or Aspergers; while children are going to have things in common, there are wide ranges of combinations of symptoms. What you read about Melanie could be very different than another child you may know who shows signs of SPD.

A few key things- Kids/toddlers with SPD don't realize they experience sensations differently than someone else. Children naturally want to please others and are not intending to misbehave. Sensory needs and challenges can change on a day to day basis; something that is tolerated one day might not work the next.

Kamber (our OT) came again on Tuesday.  She went over a few things with me from our first session last week. I was able to follow along because I had started researching SPD, and knew the vocabulary she was using, but I didn't write any of the results down, so I requested she email Melanie's official results from last weeks survey.  I know this will help me focus on what type of help Melanie needs other than just what I gather from our OT sessions with Kamber. 

This week was really like the first real session of therapy because it was the first week where it was all about Melanie, there were no questions for me to answer, and we worked on some of Melanie's goals.

GOALS: I forgot to mention these in my first post. The Infant Toddler Program is a government funded program so there needs to be a way to assess and progress monitor how the children in the program are doing, so every child in the program starts with 3 goals... Melanie's are
1- Melanie will be able to transition from play to other activities during the day more smoothly.
2- Melanie will be able to either pick out her clothes in the morning or be able to get dressed by herself, so she is more comfortable with the process.
3-Melanie will be able to tell mom when she wants to eat, and what she wants.

So, knowing that getting dressed is one of the goals I chose for her, I left Melanie in her pajamas until Kamber got to our house so she could see what the process was like and how much Melanie doesn't like to get dressed or change. This also supports goal number 1 which is transitions from play to other activities. 

As I invited Melanie to come get dressed it was a typical situation where she refused to change, she refuses by throwing a fit! Usually getting dressed with Melanie is kicking and screaming, I hold her down and fight to get clothes on. She has become VERY strong now due to the resistance she gives, thankfully I'm still stronger.  Something related to the SPD we noticed during this process is that getting dressed can and possible relates to Melanie's tactile sense. The tactile system involves the nervous system and is all touch, contact with skin. Imagine when you put clothes on, or take them off; the sensation of clothing moving over your skin triggers what the nervous system feels. Melanie seems to preform and respond much better to more pressure on her body, so feeling the clothing pulled off and then putting them back on, which is a very light feeling, could be a trigger for a "clothing change" meltdown.  To work with this Kamber recommended I start using a PECS system. PECS are pictures that I can make into a book, or just have around to show Melanie what we are going to be doing. Since she isn't super verbal yet this allows her to visually understand what we are going to do, and allows her to begin to feel comfortable with it, before I just spring changing her clothes on her.

Proprioception is another SPD vocabulary term that needs to be explained for quick understanding.

"Proprioceptive sense refers to the sensory input and feedback that tells us about movement and body position." (Click link for reference and more information.)

Melly needs a lot of proprioceptive input.  She needs deep pressure, and she needs to do heavy/hard work. She loves to run around at night and play rough with Daniel when he comes home from work. I used to worry a little that she would be getting too riled up before bed, but now I understand that she needs this form of input to help self-regulate her body. Basically, it is calming for her. She loves being rolled up in blankets, she always chooses to climb the 2 flights of stairs to get to the gym rather than take the elevator (pregnant mom would rather take the elevator, but oh well), she loves to climb, and jump off everything (loves the trampoline at the neighbors), and she tries so hard to carry or push things that are just to heavy for her. Her little body thrives on it! Kiddos with SPD are constantly working through the day to self-regulate themselves. I was fascinated to read that you can't get or give too much of this type of input.  So back to the changing clothes issue... Other than use PECS to help Melanie both see and hear that its time to change clothes, I am incorporating proprioception input by rolling her up in blankets a few times to give her some tight pressure to her whole body, to regulate her before we change clothes. (I feel like I'm back to being a new mom where it is going to take me twice as long to get her out of the house, just because of all these new adaptations I need to make to help her. So if I am supposed to meet you someplace and I say I'll be there in 20 minutes, it will probably be 30.)

My homework for this week, is to:
1. Work on giving Melly deep pressure, stretching/compressing/moving her joints.
2. Work on getting shoes and socks off. (This applies to one of her goals. I first need to teach her how to undress before she will learn how to get dressed.)
3. Download the PECS app, or print pictures to put into a book so she can communicate what she wants, and also so I can visually how her, and prepare her for what we need to do.

After this session with Kamber, I could tell that Melanie was feeling a little overwhelmed with everything we had been pushing/encouraging her to do.  But after dropping her off at the babysitter so I could go substitute that afternoon, I realized that I felt really overwhelmed.  Its hard on us mom's to see our kids struggle, and feel overwhelmed; we usually feel their pain.  I'm sure when she is in high school and she is staying up super late because she procrastinated her homework due to the nap she took after school (I did this all the time...), then I'm gonna be able to tell myself, 'she brought this on herself.'  But right now that isn't the case! She is a 2 year old trying to process so much, that she can't explain to anyone, and I feel overwhelmed for her.  I called Daniel while driving to the school and told him it was a good session, but it was hard on Melanie, and on me. He asked if this was something that I could handle doing every week. He said we were in no rush, and we could have the sessions every other week like they were originally intended to be. But I said no. I want to keep doing these session weekly, yes they are hard for Melanie, and yes they are hard for me, but I can't help but have this looming deadline of April 2nd. I have another baby coming, really soon, and I choose to focus on Melanie as much as possible before my attention is broken up.

Keep wishing me luck. And keep supporting me, you guys are my strength!