Friday, 14 October 2011

Parenting a Child with a Sensory Processing Disorder SUCKS!

Photo Credit: Tostadophoto
By Lioness Mama 

Yep – you read that right. And I will even say it again just so you know I am serious. Parenting a child with a sensory processing disorder sucks. It sucks hard. It sucks ass! It makes motherhood a rather unenjoyable experience a lot of the time. It makes it hard to want to get out of bed and face the day because you know it will be one challenge after another. It makes life seem like one freaking big chore. 

Everyone on the planet has some sort of sensory issue. Some people dislike certain types of noises. Others cannot stand to be touched a certain ways. Others have aversions to certain textures. The majority of the population can navigate their sensory preferences quite well and it does not become an impediment to daily life. For others, sensory issues become an actual disorder affecting the quality of their life as well as those around them.  

For the first year of my daughter’s life, I had no clue that she was developing (or possibly already struggling) with a sensory processing issue. I just assumed that she was ridiculously attached to me, needed comfort in the form of physical touch (including breastfeeding), and that she experienced separation anxiety more than most other babies. I chalked it up to being an attached parent and stay at home mom.  

Once my cub turned one, I started to realize that she was “different” than other children. She had major eating issues, major elimination issues, and major sleep issues. In addition, she showed signs of anxiety, a strong resistance to change, and monumentous separation anxiety. She was also becoming increasingly clingy and her emotions began to go all over the map over what I considered to be regular life occurrences.  

By the time my cub was 18 months old, she displayed some pretty concerning behaviors and reactions to life. At that point I knew that I was parenting a high needs child and quite frankly, I was drained beyond belief. I could not get any “alone” time. My cub was ALWAYS with me. She came to the bathroom with me, she bathed with me, she slept with me, she cooked with me, she cleaned with me, she did everything with me. She could not be away from me at all. If I moved out of her line of sight for even a nanosecond, a complete and utter nervous breakdown would occur.  

Sleep became a joke. Seriously. My child could not sleep unless I was with her and she was touching me. I became a slave to HER need for sleep. Naps would not happen unless I was lying in bed with her. Night time sleep was restless at best but non-existent if I tried to sneak away. 

My cub is 2 ½ now and is a very, very, very exhausting child to mother. I have become someone I do not like because of it. I am irritated all the time. I am stressed out all the time. I am overwhelmed all the time. I am resentful. I am negative. I am depressed. I feel alone and isolated. I am exhausted. I am bitchy. But most of all, I am worried beyond belief about my little cub’s future. And it doesn’t help that my mother and father are the ONLY people who believe that my daughter has a SPD. My husband says it’s a crock and that she will grow out of her issues. He also blames me for everything saying that if I had never let our daughter sleep in the same bed as us and if I would wean her from my breast, then she would completely change and become this different child. Yeah – don’t think so. 

So what exactly is life like for me and my daughter (remember she is only 2 ½)? What exactly am I bitching about? Well...since you asked… 

  • My cub has emotional hypersensitivity. When she is sad she is inconsolable. When she is scared she is inconsolable. The tears and the wailing can go on for an eternity. When she is angry or frustrated she bites objects, purposefully hurts herself (think hitting her head against a hard object of biting her arm hard enough to draw blood), or forcefully discards the object of her frustration.
  • She has amplified mental processing speed meaning she can take in her surroundings much quicker than the average adult. She deeply FEELS the mood and is uber aware of every minute detail going on around her. This is overwhelming her and makes it difficult for us to take her anywhere that is outside her comfort zone. It also takes a long time for her to become comfortable at places like friends’ houses, parks, or grocery stores. I pretty much have to take her to the same places over and over again. It is not worth her stress (which comes out in her sleep and in her overattachment to me) to force her into a new and unnecessary situation.
  • My cub has a heightened awareness to the mood, emotions, and atmosphere around her which makes it tough for my husband and I to have any sort of conversation. We have some communication issues and my daughter gets extremely stressed out and acts out whenever my husband and I engage in anything more than a casual conversation. She also has difficulties with my having a phone conversation with anyone (mostly because she is reading my emotions and not understanding what is going on with the person on the other end). She has difficulty when I display another emotion other than a positive, happy, lighthearted mood. If I speak to her in a harsh, irritated, or angry tone, all hell breaks loose. She becomes very withdrawn and then completely loses it, sobbing uncontrollably and then asking me again and again and again and again for days on end if I am mad, frustrated, or sad.
  • She experiences social introversion and does not enjoy playing with children she does not know. She really only has three “friends” whom she is comfortable with and it has taken a year for that to happen. My cub prefers to be an observer on the outside and away from the group.
  • My daughter has extreme difficulty adjusting to a temporary or permanent change in routine. She HAS to do the same thing in the same basic order every day. Now that she is 2 ½, she really knows what we typically do and it throws her completely off kilter for the rest of the day if things get altered. Visits from the in-laws, visits from friends, unavoidable errands that are NOT carried out on their typically designated day, changes in weather than affect our daily routine, and changes in my husband’s work schedule are just a few of the things that cause all hell to break loose. It not only affects my daughter on that day but she will struggle for up to a week. A week long visit from the in-laws keeps her off kilter and acting out wildly for weeks! She will also inevitably end up sick after a major change in routine.
  • My cub is over anxious – a worrier. After something happens that causes her distress, she will ask about it and brood over it for days on end. For instance, we gave a friend one of our dishes when we brought over some baked goods. My daughter asked about that dish every day until we got it back. She was consumed with the dish being gone. Imagine how she deals with seeing a cat get hit by a car. Oh yeah – that has happened twice now while we were walking to the park. We also saw a dog get hit. And we have seen a wide variety of dead animals including skunks, rabbits, foxes, raccoons, opossums, squirrels, moles, birds, rats, and snakes. Words cannot express how much of a struggle this is for my daughter. She understands death but nonetheless, worries over the well being of the dead animal. She will say “bunny gone” every few minutes for hours and then bring it up again the next day. And the next. And the next. Infinity.
  • My daughter is only soothed tactilely and she cannot self sooth at all. When she gets upset about anything or has been away from me for any period of time (minutes to an hour or two), the only way she can calm down and settle herself is through touching me. She either rubs my sides, my belly, or kneads me like cat. She has to have skin on skin contact. She breastfeeds for comfort a TON. She typically breastfeeds 16 times in a 24 hour period. Remember – she is 2 ½. 16 times per day is in line with a newborn’s needs. She has to be worn in my Beco carrier a lot or else I am holding her. If anyone (whether she knows them or not) comes within close proximately, she is asking me to nurse her or she has to be held. She needs lots of cuddling, snuggling, and hugging. I’m sure it is no surprise that I am beyond touched out. This little person is physically attached to me a good 20 hours per day. Which leads me to…
  • Extreme separation anxiety. Oh lordy lord. I pay dearly when my cub is not with me. My husband takes her to the park on Sunday mornings for 2 hours so I can attend to household duties that are difficult with my cub “helping.” Not only does she not want to go but she begs me to come. She has a good time with her daddy but upon return typically loses it and heads right for the boob and rubs my skin ferociously. My mother watches my daughter a total of 6 hours per week broken into two days. I use that time for my own doctor’s appointments, paying bills, running errands that are not worth bringing my daughter along on, catching up on email or phone calls, tending to my animals, etc… There is no “me time” during these breaks from my cub. I am basically running around like a chicken with my head cut off, catching up on life. I also use some of this time to sit down with my husband to have the conversations we cannot have in front of our wee one. When our cub returns it is a crisis of epic proportions. I’ll leave it at that. And again, the extreme separation anxiety leads me to…drum roll please…
  • Extreme sleep difficulties. My daughter cannot settle into sleep without me and cannot stay asleep without me. She has to be breastfed and rocked to sleep both for nap and for nighttime. She will not stay asleep if I am not with her in bed. She has to either hold my hand, cuddle next to me, or sleep on top of me. Yes, my 23 pound toddler sleeps on top of me a lot of the time. During nap time, I have no chance of sneaking away. She is a light sleeper if she naps at all. On days that she has been away from me, naps pretty much do not happen because she is worried that I will disappear. So I take her nap needs very seriously and lay as still as possible and let her sleep. I am not kidding when I say that if I take a deep breath she will wake up in a complete panic. Night time sleep is also an issue. She has to be breastfeed and rocked then she has to lay on top of me until she falls asleep. On days when there has been no separation, she falls asleep within an hour. On days when there has been a separation, it can take hours for her to feel safe enough to fall asleep. On those nights, I do not even try to sneak out of bed. On nights when she is in a slightly deeper sleep, I have one opportunity to sneak away for about an hour. However, I had better get back into bed and cuddle up next to her as stealth like as possible BEFORE she wakes up. If she wakes up and I am not there she becomes a freaked out screaming banshee and will not sleep the rest of the night. As it is, she wakes up every hour looking for me (even though I am right there) and then needs to nurse back to sleep.
    She obsesses over my presence. Before we settle into the rocking chair she constantly asks me, “Hold hands, cuddle, on top?” “Mama stay. No go potty. In bed. Me?” She gets so anxious over my physical presence in bed with her. And she freaks out if I close my eyes. Freaks out!  
    She talks all night long in her sleep. That is how she processes her day. She talks about everything that happened basically.  
    She thrashes, tosses, and is very restless all while in physical contact with me.  
    She senses when I am annoyed or want to slip away, even to just go pee. And she freaks out.
    I clearly do not get a lot of sleep. Which pisses me off. And makes me mean. And makes life difficult to cope with. Not many people I know could live on the 3-4 hours of sleep I get in a 24 hours period. And that sleep is interrupted sleep.
I have sought help for my cub and found some great support both online and in a wonderful naturopath pediatrician who deeply understands SPD. Because of him, my cub has actually improved just a wee bit and trust me…a wee bit is HUGE. He has steered us in the direction of several homeopathic remedies that do help take the edge off. We use Aurum Lavender Rose Oil/Cream to help my cub with overwhelm and sensitivity to environment. We use Bryophyllum Avena Tension Relief liquid to help settle and ease my daughter in general. It helps with sleep too. We also use Rescue Remedy as needed to help my cub deal with extra stressful situations as well as during times of meltdown. He has us incorporating the Wilbarger Brushing technique along with joint compressions which help with anxiety and to aid in relaxation after a meltdown. We recently incorporated a weighted blanket which helps give my daughter more security when she sleeps allowing her to be a little less restless.  

We just started cranial sacral therapy but after one treatment I noticed a difference in my daughter’s general stress and anxiety level. After we got home from the session she was able to play by herself while I fixed dinner. Pretty unheard of in our house. Cranial Sacral Therapy is a non-invasive hands-on, gentle technique that evaluates and enhances the function of the craniosacral system, which includes the membranes and cerebrospinal fluid that surround and protect the brain and spinal cord. Cranial sacral therapy is especially beneficial for children with SPD in that it helps reduce stress and brings about greater relaxation. It also improves tolerance for sensory stimulation and awareness. It helps bring about sleep and eases restlessness. There are a lot of additional benefits but these are the main ones I am hoping to see.  

Is anyone still reading??? I know that this post got long but apparently I have been needing to write this out for quite some time. 

I would not trade my daughter for the world. I love her more than life itself. When we have fun, we have FUN. I love her snuggles. I love her generous spirit. I love her despite how difficult it can be to be her mother. Some days are better than others. Some days it is easier to be positive. Some days I am calm and easy going. But it seems like these days are few and far between. I hate that. I hate not getting enough sleep. I hate being clung too. I hate how I have to really consider the impacts everything I say and do will have on my daughter. Deciding to stay home and clean house instead of going on our obligatory trip to the park could have lasting impacts on my daughter’s emotional state for the remainder of the day. Spontaneity is out of the question. However, I carry on and do the best that I can, one day at a time. But the worry over my daughter and her future consumes me at times. And so does my need for some personal space.  

And to end this post… 

Websites I Value
Thank you for reading…this felt good to write!

11 comments:

  1. This has really touched me and shifted my thinking hugely about my own child and her reality - it has given me more compassion for her, and myself. It has provided an "aha" moment of realisation about WHAT it is we are dealing with, the reasons for her challenging behaviour,and ways to deal with it, rather than just writing off her problems with anger, frustration and fussiness as "bad" behaviour.

    Thank you for your honesty. I totally relate to the DEEPLY challenging nature of parenting a high needs child. And thank you for the resources and a label to hang these behaviours on... at last! And it has really helped my husband who also REALLY struggles with her.

    I shall be blogging on this topic next week. Thank you for the inspiration. x

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  2. Have you heard of GAPS? I sounds like you are desperate enough to try it. We are using it to heal my son of ADHD and minor sensory processing issues. Here's the link to the book: http://www.amazon.com/Psychology-Syndrome-D-D-D-H-D-Schizophrenia/dp/0954852028/ref=dp_ob_title_bk
    and website: http://gapsdiet.com/

    Here's story of a mom healing her son with ADHD, and sensory symptoms, including “Auditory Processing Disorder” and “Sensory Integration Disorder.”
    http://www.lifeisapalindrome.com/updates/healing-adhd

    Janice's before and after videos of her son Sam after only a few months on the diet:
    http://sahmville.blogspot.com/2011/02/autism-improvement-on-video.html

    If you're interested or have questions, join us on the GAPS yahoo group:
    http://health.groups.yahoo.com/group/GAPShelp/

    Good luck on your journey.
    --Catherine

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  3. wow, my son has the same disorder and in a way i am glad i had no idea what was wrong with him til he was 7- obviously i knew something was wrong but i just struggled through, intuitively knowing he was a sensitive boy! i was a single mum with an older sibling to care for too! he's now 19, studying and has a part time job :)

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  4. Hugs to you, mama. I can relate to many of these feelings, and I hope for you that it continues to get easier (or at least more manageable) for you and your daughter.

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  5. Oh, my... And here I was feeling as if my little one was stuck to me all day. I'm amazed that you made it this far without completely losing it! At least I get showers, naptime, and dinnertime to myself - not quite "alone" time, but alone enough. I'm glad to hear that you've found a specialist who understand SPD and is working to help you and your daughter. I hope that, as she grows older and gains a good vocabulary, she'll be able to express herself orally.

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  6. Thank you for your post, I really feel for you *hugs*. I have a 9mth old and he pretty much screamed for the first 6mths of his life, he has always been super attached to me, even as a newborn other ppl couldnt nurse him. He breaks down every time I leave the room and is unsettled when we go places. I didn't leave the house for months. You have lived this for 2 yrs...wow...I am struggling after 9 months. He has improved with some things but is so super sensitive and has not slept more than 3 hrs since he was born and won't sleep longer than 40mins on his own. People always comment on how alert he is, he notices everything and is easily upset. I am just wondering what your cub was like at this age and if there are things I can do now to help? I am making a sensory table to start introducing various things through play to see if this helps any advice would be helpful, thank you.
    Natasha

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  7. Oh, my- I remember feeling like this at times. My oldest never slept as baby except on my body or with me in the bed. I could not shower without her screaming, while my husband held her. She is my one that nursed the longest, 3 1/2 years. The normal noises of children still bother her at 13. When I hear stories like yours or the one of my friends I thank God for her. But she is a highly intelligent child One of the top kids in our school. God Bless you and your daughter, getting through long days like you have are tiring. But remember to pace yourself and take care of yourself.

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  8. Hugs to you mama! I have been there! Surprisingl my middle daughter who has been offically diagnosed with SPD is not clingy at all but you just described my sons first 2 years of life to a T!! He is almost 6 now and still uber sensitive and clingy. Getting him to go to school in the morning can be a nightmare. Now I am wondering if I should ask to have him evauluated....

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  9. Wow you just described my daughter now 2 and 1/2 to the letter. This post is over a year and a half old, so I wonder how your 4 year old is adjusting? I often wonder if there is an end in sight and only hope that my daughter can find a way to be happy and comfortable in her own skin. Hopefully you have found a way to get some sleep.

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  10. Any updates? You have almost exactly described my 18 m old and I'd love to know how things are going for you today!

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  11. I came across this in a search for SPD. I have 2 children now in their tweens who were and are in many ways like that, but I think I was and still am that way myself and didn't realize it until I had my kids. As a result, I've been sympathetic and instinctively try to work with or around their sensitivities. As a parent, I am constantly exhausted, but I am proud that they are considerate, well-behaved and mannered, and fun to be with. Both are very intelligent, yet have trouble paying attention in school, so finally I will be seeking a proper diagnosis. I hope your cub is doing well.

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