55 Comments

  1. You hang in there and do what you have to do for your kid. She will be grateful some day. Be strong and show her all the love and support you have for her. My prayers go out for that beautiful little girl.

  2. I feel so sorry for you and your little girl. It is the worst thing if they are upset and you as a mum can’t fix it for them. My eldest daughter has Dyspraxia and she used to get so irritated by tiny things like labels or elastic in her clothing. Also she would feel physically sick in a noisy environment and then she wouldn’t want to eat either. It was very stressful at the time. Now she is grown up and she is doing ok. I hope your beautiful girl will eventually find ways to cope as she matures.
    What did make me chuckle is your bio where you say you are a legal alien. It is funny to me because that is what I get called by my hubby and kids (Dutch girl living in Wales)

    1. I hear you Hannelore, the tiniest strange things can send her over the edge and cause fits. Labels usually get cut out of her clothing right away.
      I so appreciate the sweet words from another alien ๐Ÿ˜‰

  3. oh julia, i am so sorry you are going through this when you are away and without your therapist nearby or access to her closet. i don’t have experience with this so i can’t help with any tips or info, but know that i love you and am thinking of you. and emmy and i think lily is just so beautiful, so please tell her that for us!

  4. My grandson has sensory issues also. Clothing bothers him but sometimes it is the clothing on top of all the other sensory stimuli, like smells, sounds, etc. Sometimes it can be the kind of thread used to sew fabric together, tags of course are a nightmare. I know it is hard, but you are not alone. I truly hope things improve and you all can enjoy your trip.

    1. I love that you as a grandmother are understanding. That’s exactly the area where we’ve been having trouble ๐Ÿ˜‰ Thanks so much for your message.

  5. What a beautiful little girl, and you are a remarkable mom. I am so sorry you have not had the support you need, your perseverance is truly inspirational.

  6. I have mesophonia and cycles of being very sensitive skinned. I never thought to research it until I was in my late 30s. When I discovered that my hearing issues had a name, I can’t tell you how relieved I was! Growing up I was always made fun of, or told to suck it up, or accused of being overly sensitive or just bratty. But, it was an actual condition all along! I cannt tell you how awesome you are to be a mother who is aware of the conditions. I understand the helplessness and frustration you feel because you want to fix it, but believe me, you would have made a WORLD of difference in my life if you had been my Mom. This is an amazing thing you are doing. Thank you from a kid that went without that support. I think it’s wonderful that she feels safe enough with you to break down and fall apart.

  7. It is so very hard and the older they get the less understanding people can be. Therapy definitely helps. My daughter struggles with the same “I don’t want to be different” issue. I think age 7, for us, was the most difficult. Now she is 12 and is much better at knowing and choosing what makes her comfortable. We certainly talk a lot about individual choices and pointing out when we are making them for our own comfort. When she was younger she used to insist on wearing tights, even though they drove her crazy. She’ll only wear one or two pairs of shoes. She hates underwear, but of course, has to wear it because puberty. I found that her need for soft clothes and elastic waists was best met by hanna andersson when she was young. Giant fits that look like temper tantrums certainly bring out the judge-y in people. My daughter also has bathroom issues, they are very common with this. And she didn’t sleep through the night till she was 11. Melatonin and walking long distances with a heavy backpack made a huge difference there. Hang in there, sounds like you are an amazing mom who really listens to her child and advocates for her, standing up for her to those who don’t know. Keep your chin up, you know what she needs. And dig deep for your patience, but don’t beat yourself up if you can’t find it some days. This stuff is so hard.

    1. Yes, I’ve noticed that bathroom issues are very common with this. It also has to do with certain feelings they don’t like. I’m very fortunate that her sleeping issues weren’t that bad but it was very hard for me to understand why she didn’t want me to snuggle with her when she was a toddler. Even just being covered by a blanket was hard for her.
      She has become quite the smuggler though.
      I really wish other people would be more understanding. Thanks so so much for your message. It helps so much to know that we aren’t alone.

  8. Wow, Julia… I don’t even know what to say. Heart-breaking for sure! I hope you guys can figure out how to cope until you get home. Hang in there!

  9. I’m so sorry, mama! You’re an incredible mom to understand that there’s an issue there and do what you can to fix it. ((hugs!!))

  10. I am so sorry that you guys are going through this while you are traveling! I want you to have a fantastic time!!

    My son has struggled with soiling and I suspect it is the cycle of encopresis. He has had constipation since her was 6 months old. We have been to specialists but it has been no help because he is a stubborn guy and won’t adhere to any of the guidelines for easing his condition. It has gotten better now that he is almost 9 but ages 3-6 we awful! I might look into that book you recommended…

    Praying that the rest of your trip is enjoyable!!

  11. Julia I will keep your beautiful little girl in my prayers, along with you and your family. It is so wonderful that you write about this because hopefully you can connect with other people dealing with the same issues, but also because your post educates the rest of us on these struggles and how difficult they can be. Even though I don’t know about these illnesses, we all have our personal battles so you are not alone, my friend. Hang in there. PS your little girl is quite the beauty! XO

  12. I am so sorry for your pain. This would be so overwhelming. She is just adorable and I know your heart hurts so much for her. I will keep you all in my prayers. I know sometimes you must feel so alone and discouraged, I hope and pray you will find peace with this issue. Hugs to both of you.

  13. Awe, Julia, she is so precious. What a frustrating struggle! You’re an amazing mom! I’m sorry you’re dealing with it at all let alone while out of the country. I don’t have any experience with it but do you think it’s something essential oils may help with? I’d be happy to help research/come up with some suggestions. I have heard of eo’s helping so many – and even in our own home with anxiety where I was to the point desperate enough to try anything, especially a natural alternative, they’ve helped which makes me want to share. I know that helpless/desperate feeling. If so, let me know. Your sweet little girl, you and your family are in my thoughts and prayers. xo

  14. At our house its hair brushing. I do my best but we struggle every day. We even had a teacher that thought she needed to get evolved. Everyone has an option. But only you as a mom know how hard it is. Hang in there you are not alone. There are more moms going through this than come out and talk about it.
    Best wishes on your journey
    Melissa

  15. This is one of the symptoms of PANS…have you ever checked that out?

    1. I googled this ๐Ÿ˜‰ Pediatric Acute Onset Neuropsychiatric Syndrome, PANS
      My daughter was pretty much born this way but has shown some obsessive compulsive signs too.

  16. I so hope your little Lily gets some relief right away. Does a warm bath with maybe Coconut Oil in it help any? To soothe her skin and nerves? I too am wondering about essential oils? The brand of Coconut oil I use is for food/eating and has no smell or taste. I buy it at Walmart, Publix & not sure where else, so it is a common item. 100% Pure, non hydrogenated, non GMO. Anyway it does not bother me. I can not use very many lotions or creams either…. and I am thinking you can get a similar brand there?? I so hope she feels better very soon.

  17. You, your family and your precious daughter are in my thoughts and prayers.

  18. I’ve got a kid with sensory issues. Parenting is hard but this sort of thing made it harder for sure. But it does get better. He’s 13 now and while he’s still exceedingly ticklish and squirmish, my mother tells me this will change when he wants to get close to a lady. Haha. I don’t know!

    1. Yes, it is so hard. Thanks so much for making me feel like I’m not alone ๐Ÿ˜‰

  19. I am so sorry for your struggles. I don’t know if they would help, but you might try finding a naturopath that can help you will essential oils. I have had amazing results with using them for my migrains. Even is they just find something that would smooth thing out a bit, it sounds like you would appreciate anything natural that would help her cope with her body’s signals. I hope things improve.

    1. I’ve heard about this now from some other people and will look into it for sure. Thanks so much!

  20. I’m sorry for the struggles you and your daughter are currently facing. Hopefully you can have continued strength. Sounds like you are an amazing mother!

  21. Oh Julia! I’m so sorry that it has been so difficult for you and your daughter especially when you are away from home. Let me know if you’d like me to ask some of the OTs I work with for any suggestions. You’re both in my thoughts and prayers.

  22. Oh Julia. This is so heartbreaking. I cannot imagine how difficult things are for both of you. I know traveling and being out of a routine probably doesn’t help the situation either. Thinking of you both.

  23. I love your blog and I was so moved by your last post. I know how alone you must feel because I have been through similar trials with my son. I’m happy to report that it really does get easier. For my son, after the teenage years, he has finally settled down, is an easy-going guy and doing well. I never thought I’d say that. Just know and trust your gut. Mom’s want answers from experts, but they really do know best.

    1. Thank you so much Sarah. It helps to know that other mom’s have or had to deal with the same thing and that there is a possibility it might get better as she gets older. I’m still very scared of puberty though ๐Ÿ˜‰

  24. Julia, I’m so sorry. Your daughter is such a beautiful little girl, reading about her struggles is really heartbreaking. You are such an awesome mom to get her the help she needs.

  25. Hi Julia, Thanks for being so honest and heartfelt. I have 5 kids kids and one with special needs so I understand the everyday struggles that one can go thru and how exhausting it can be – especially if a spouse or family member doesn’t “buy” into it. (sigh…) Hang in their Mom you are certainly doing the best you can!

  26. Your daughter is lucky to have such a loving mother that works really hard to help her with her issues.

  27. Hallo Julia,
    mein Name ist Sabine, ich bin aus Deutschland, lebe auch dort und verfolge deinen Blog schon einige Zeit. Ich spreche zwar etwas Englisch, aber wie es nun mal so ist, sind manche Vokabeln einfach verschollen und so ist es nicht immer so einfach alles ganz deutlich zu übersetzen.:-/
    Ich habe 3 Söhne (17,12 und 2 Jahre). Mit meinem 17 Jährigen habe ich eine ähnliche Odyssee hinter mir und wir sind immer noch nicht fertig damit. Jahre lange Ärzte Rennerei, was denn mit ihm “nicht stimmt” haben wir hinter uns gebracht und ständig haben wir andere Diagnosen um die Ohren gehauen bekommen.

    Das Einkoten haben wir bis heute, selbst mit 17 noch! Das hat Klassenfahrten und sonstige gesellschaftliche Dinge völlig unmöglich gemacht. Die letzte Diagnose war: sogar nach 17 Jahren!!!! (Also wieso bitte brauchen Ärzte 17 Jahre um eine solche These aufzustellen???) Asperger Syndrom, also eine Form von Autismus.
    Manchmal haben wir von Ärzten und anderen Leuten gesagt bekommen, der ist einfach nicht normal im Kopf……ich könnte dir jetzt hier noch einen ganzen Roman schreiben, aber ich glaube dazu reicht der Platz nicht!
    Das Schicksal deiner Tochter hat mich sehr berührt und ich weiß ganz genau wie du dich fühlst, man steht damit völlig alleine!
    Wie schon gesagt, fällt es mir nicht so leicht alles in Englisch zu verfolgen, aber ich beiße mich durch!

    1. Hallo Sabine,
      Sorry das es schwer ist das alles auf Englisch zu verfolgen.
      Wie schrecklich das Ärzte gesagt haben Dein Sohn ist nicht richtig im Kopf. Unglaublich!
      Ich habe einige Freunde mit Kindern die Aspergers haben.
      Das mit dem Einkoten ist so schlimm für Kinder und es war schrecklich was andere Kinder zu ihr gesagt haben. Sie hat ja auch gestunken. Ich war auch bei einer Psychologin die uns sagte dass unsere Tochter das macht um uns eins Auszuwischen und ich müsste sie bestrafen. Das war das letzte mal das ich da hingegangen bin. Ich wusste ganz genau dass sie so nicht sein wollte.

      Der Dr. Collins den ich oben erwähnt habe hat mir sehr sehr geholfen. Ich bin mir sicher sein Program würde Deinem Sohn auch helfen. Es war das beste Geld dass ich je ausgegeben habe.

      Du kannst mir auch mal eine email schreiben cuckoo4design(at)gmail(dot)com

  28. I cant believe I’ve never heard of this! I can only imagine what the two of you must go through every day. I hope that it gets better and you can both eventually sigh a breath of relief. <3

  29. I’m so sorry she’s having such a rough trip (and you, too!)….traveling isn’t easy on kids even when there aren’t any complicating issues; I know this has to make it so much harder.

  30. She is the most beautiful little girl. So hard to hear what a tough time she, and you, are having with this again. Really hoping you head into an easier patch soon, and I can only imagine how isolated and alone you both must feel at times. None of her issues are mainstream and I’m sure it’s really difficult to come up against people who don’t understand and just brush it aside because they don’t get it. xoxoxo

  31. Oh hun, I missed this post so I’m late in my commenting but I’m so sorry you and your gorgeous girl are having to deal with so much pain. I can’t possibly imagine how difficult it must be for both of you, especially away from home. I really do hope that you get to an easier patch soon and things ease up a bit. Such a shame you haven’t got more support around you, though, people can be so ignorant of what they don’t understand. Sending big hugs to you both xxx

  32. I’m so sorry to hear she’s having such a hard time Julia especially when you are so far from home. I hope things will get better soon for you both! She really is beautiful!

  33. I have had the same issues that your daughter has. The feeling of certain textures put me over the edge. My parents were so frustrated with me when I was a little kid. Even now I still have them, but I know what to avoid. If something is fuzzy or furry, I cannot touch it. No fleece, or flannel or anything like that for me! People can be very judgey of these things. Most people think it’s ‘made up’ or for attention. I assure you it’s not. I’m so sorry you are struggling while she struggles. Hang in there. You definitely have my support and understanding!

  34. I have an 11 year old nephew who has sensory issues also…but his is with food and sound. Ever since he started solid food he would only eat certain things like yogurt, pudding, oatmeal……there were very few items he would eat. If there was any kind of loud sounds, like a dog bark or a bang…..something that the average person wouldn’t even notice, he would cover his ears to not hear it. His mother was dealing with it fine for a while but after my step brother died (his father) when my nephew was 5, she seemed to give up…..or maybe just didn’t have that other parent fighting what she really wanted to do…..put him on medication. She is a special ed assistant so knew everything to tell the doctors to get him on meds for sure and for a while was in such a haze of medicine, he wasn’t much of a little boy anymore. The mom stopped parenting, was passing him off to anyone who would take him so she could spend time with her boyfriend, take vacations multiples times a year with out him, etc etc. The family stepped in and he is now living with his aunt, my step sister, and doing much better. He is not on as many meds….still on some for other issues…but his sensory issues are much less and he is a little boy again. My point of this story is….don’t give up. It might be hard and trying at times, or all the time..but you and your husband are the advocates for that little girl….you are doing a great job, keep it up.

  35. I am retired now, but when I worked at a school for gifted and talented children in middle and high school, we had several students with sensory clothing issues. Some were diagnosed with Asperger’s Spectrum Disorder, ASD, a very high functioning form of autism. Food peculiarities & aversions, allergies and sensitivities, dislike for crowds and loud noises were all common behaviors. Look into it if you haven’t already. there are many useful therapies available.

    1. Yes I have written posts about our journey and she’s been in therapy. It’s a constant struggle and lots of ups and downs.

Leave a Reply

Your email address will not be published. Required fields are marked *

This site uses Akismet to reduce spam. Learn how your comment data is processed.