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.
Friday, January 23, 2015
Friday, January 16, 2015
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.
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!
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!
Monday, January 12, 2015
Instincts and The Beginning
Here is where our story starts...
Since Melanie was about 18 months I have been concerned with her speech development. I found an online assessment/survey the state provided to see if she was measuring where she should be for her age. At the time, the results were indicating that she was a very little bit behind, but that it shouldn't be a concern. Something I learned through this process is that when I am given a parental prompting I need to follow it! After my mother-in-law, Susie came to visit us in October, I then began to worry about her behaviors, tantrums, meltdown, all that jazz, on top of the still slow speech. I's say I do enough reading to know that tantrums are a part of turning 2 and that the tantrums can start well before two, so I kind of ignored it. Then just a few days later I went to visit my family in San Diego for my youngest sister Juliette's mission homecoming.
While there Melanie didn't enjoy interacting with anyone but myself, my dad, and occasionally my nephew, niece, or mom. I observed my niece who is 5 months younger speaking much, much more than Melanie. She was at least trying to copy not just what her mom Elizabeth said, but anyone who asked her to say something. Again I tried to push the concern out of my mind by telling myself, "all children develop at their own pace."
However on the last morning of my trip, and a particularly hard morning I realized Melanie really needed help. Help that I just can't offer her, not because I'm lazy, selfish of my personal time, or disinterested, but because I am simply at a loss of what to do, and how to help. I of course went through the period of feeling like I was letting her down, and feeling like I was helpless to my child, but after a few hours crying to Daniel, I picked myself up and made some phones calls. Asked people in my area, and friends who have children with speech delays what, and where I should start.
I had a few people direct me to the Idaho Infant Toddler Program (ITP), which was strangely enough the same place I found the online survey I had taken for Melly when she was 18 months old. So I took the survey again, and same response... she's fine. I wasn't going to take this for an answer because I just didn't believe it. I called an asked to schedule an in person appointment, I wanted someone to see Melanie "run tests" or whatever for them to really evaluate her developmet.
On November 20 almost 3 weeks after scheduling something the first person from the ITP, a case worker, came to our home. She told me about the program and I signed a few different forms, necessary to participate. The program is paid for by the Idaho Department of Health and Welfare, so it is a 100% free program to use (HUGE BLESSING!). Because it is a government program I had to agree that the data collected on Melanie's development while in the program can be reported to, and used by the State. Then the caseworker took back the small amount of information collected from me, about my concerns with Melanie to, "the team". The team is filled with all kind of developments specialist: Occupational Therapist (OT), Speech and Language Pathologist (SLP), Behavioral Development, and so on.
After they discussed Melanie, I received a phone call from the Developmental specialist who schedule a time to visit and observe Melanie, in ALL areas of a childs development. This appointment was set for Friday, the 5th. We held it in the morning when Melanie seems to be happier, and after an hour and a half, the very nice woman told me that it was likely Melanie would qualify for the program. I asked in what areas, because I knew her speech was low, but wasn't sure if there were more. I was smart to ask (thank you prompting) because she will likely also receive help for her behavioral skills. I was really happy to hear that they would help provide suggestions for developing her behavioral needs! I'm totally open to having trained and educated people evaluate Melanie and provide specific feed back that will help her, and me!
I was more excited and happy to hear that she was going to get help. If I had been told she was totally fine I would have felt lost, helpless, and just awful, not knowing what to do to help her communicate with Daniel and I.
I got a phone call just a few days later saying that she was going to qualify for the program and will receive Occupational Therapy (OT).
"In its simplest terms, occupational therapists and occupational therapy assistants help people across the lifespan participate in the things they want and need to do through the therapeutic use of everyday activities (occupations). Common occupational therapy interventions include helping children with disabilities to participate fully in school and social situations, helping people recovering from injury to regain skills, and providing supports for older adults experiencing physical and cognitive changes."Melly is going to have 12 sessions, 1 hour each. While I was thrilled for any help, I still want the speech addressed. I thought that was the biggest factor in the behavioral issues (I was wrong) so I was surprised when the team recommended OT. I did request a Speech and Language Pathologist (SLP) come after a few sessions of OT because I really want the speech to improve!
This first OT session was set for Tuesday the 6th at noon, and it couldn't have come on a better day. It was probably my hardest parenting day to date. That's a different story, one I'm not proud of so I won't be sharing. Enter Kamber, our Occupational Therapist...
This session was mostly a Q&A for me asking about Melly's senses. Turns out Melanie has what is described as Sensory Processing Disorder (SPD).
"a condition that exists when sensory signals don't get organized into appropriate responses. SPD is likened to a neurological "traffic jam" that prevents certain parts of the brain from receiving the information needed to interpret sensory information correctly. A person with SPD finds it difficult to process and act upon information received through the senses, which creates challenges in performing countless everyday tasks. Motor clumsiness, behavioral problems, anxiety, depression, school failure, and other impacts may result if the disorder is not treated effectively. "It was mind blowing for me to have someone observe Melanie for an hour and pick up on things that she likely often does, and instantly give me suggestions for helping her calm down, and feel the physical release her body craves. Three suggestions she presented me before leaving were the following.
1- Chewy Tubes. Melanie still take a pacifier, but I realize now that its not because it soothes her, rather she has a serious oral fixation. She chews them to pieces. The only time she really sucks on the pacifier is at night/bedtime and for naps, other than that its just a chew toy. Thus the suggestion to get away from the pacifier and introduce the Chewy Tubes. I'll go more into detail on a different post about her Oral fixation.
2- A Squish Box. Here is a description for you first... Put pillows, blankets, and stuffed animals in a box/bin/big tupperware; then have her sit inside of it. Often times after Melly has a meltdown she then comes running for us to be held and comforted. It has been so confusing for us because at times she does not want to be held, and times she does. Turns out she needs the embrace as a sensory release, so when she has a melt down or goes into timeout if we put her in the Squish Box she then she doesn't feel abandoned. She will have a sensory release, and can better think about the action/choice she made that was wrong, rather than be overcome with only thinking about her senses. (I asked the OT her thought on timeouts, because I was curious if it is affective at this age. She said that its more important to punish a child for actions and not behaviors. Found that interesting.)
3- Books. The first is called Understanding Your Child's Sensory Signals, and the other Your Essential Guide to Understanding Sensory Processing Disorder. Both are written by Angie Voss.
The first of the two books gives a TON of different SPD issues and then several suggestions to help those specific problems for example...
Walks on Toes (Toe Walking)- Sensory Explanation: Toe walking is often a sensory signal that the child is trying to self-regulate. This often serves as a sensory anchor. Toe walking increases proprioceptive feedback and in turn promotes self-regulation. This can becomea habit for the child due to muscle memory and how the brain learns specific gait patterns.
- Be sure this is assessed by a PT or OT to determine any other possible factors contributing to the toe walking such as muscle tone or decreased range of motion.
- Use weighted shoe pockets or weighted belts.
- Encourage jumping activities such as trampoline, BOSU ball, hippity hop ball, marching, hopping, and skipping.
- Encourage climbing slides.
- Encourage walking up hills.
- Try other types of joint traction and compression activities.
I am feeling very excited and relieved to be getting some help. Speaking with my sister Elizabeth on the phone the other day she said something that was so true... When you hire a dog trainer, its more for the human to learn how to help/train the dog. She then compared it to what my OT will be doing, Kamber will be teaching me what to do to help and teach Melanie how to process things that come into her everyday life.
In its simplest terms, occupational therapists and occupational therapy assistants help people across the lifespan participate in the things they want and need to do through the therapeutic use of everyday activities (occupations). Common occupational therapy interventions include helping children with disabilities to participate fully in school and social situations, helping people recovering from injury to regain skills, and providing supports for older adults experiencing physical and cognitive changes. - See more at: http://www.aota.org/about-occupational-therapy.aspx#sthash.n5Rqyvw9.dpufn its simplest terms, occupational therapists and occupational therapy assistants help people across the lifespan participate in the things they want and need to do through the therapeutic use of everyday activities (occupations). Common occupational therapy interventions include helping children with disabilities to participate fully in school and social situations, helping people recovering from injury to regain skills, and providing supports for older adults experiencing physical and cognitive changes. - See more at: http://www.aota.org/about-occupational-therapy.aspx#sthash.n5Rqyvw9.dpuf
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