Wednesday, 21 August 2013

Struggling and Losing Hope

I really am struggling.  I feel kind of bad, because I have recently become aware that there are quite a few local “autism moms” who read my blog and find it inspirational.  I don’t feel like an inspiration right now, I feel useless.  I feel like I’m doing it all wrong.  I feel discouraged.  I feel exhausted. 

This is all about my fear for Nathan.  My limitations when it comes to helping him.  It’s about the fact that at age 3 and a half he is entering his third year of formal schooling.  It’s the memory of that first teacher telling me that I wouldn’t recognize Nathan in 6 months, that his progress would astound me.  Here I sit.  Still waiting.  I sat down and really read his IEP update from the extended school year last night.  He is meeting only one of 6 goals- receptive language, per the speech pathologist (who ironically is the daughter in law of Jack’s kindergarten teacher- the teacher emailed me to tell me how cute her DIL thought Natey was).  The biggest issue is consistency.  Even if he does something fabulous, getting him to repeat it is impossible. I know this.  There are days that the words just flow, and then nothing, sometimes for weeks.  I know what it is.  It’s the “noise” as I call it.  He can’t focus; the need for stimulation is so intense, especially tactile and visual.  He constantly wants us to squeeze him- his arms his legs- he will take your hand and place it there.  If you do it “wrong” he moves your hand back, as in, try again buster.  He waves things in front of his face at every opportunity.  He figured out that our mail is kept on a washstand by the front entrance of the house and has taken to shredding it so that he can dangle the paper in front of his face.  He has a “Woody” doll that has been getting a lot of attention- it’s because its arms and legs sway when he puts it in front of his face.  He goes after toilet paper, paper towels, napkins, leaves, grass, anything that he can dangle in front of his face.  If none of this is available (and God knows I try to keep it away from him) he now uses his fingers.  Several people have said “oh look he learned to wave”.  I want to smack them and say, “No moron, it’s stimming”.  Once again- grace.  I smile and nod.  If that’s what they need to believe then so be it- I don’t have that luxury.

If we could calm the stimming he could make progress I just know it.  That’s why I have tried the diets, the supplements.  Why I haven’t given up, why I keep adding them.  For the past two years.  To be honest, today I feel like giving up.  I gave him nothing this morning for the first time in years, and I know it won’t matter.  We STILL don’t have the mitochondrial cocktail, as Nate’s doctor needs to call it in to the new compounding pharmacy and hasn’t yet done so.  I spent 20 minutes on the phone with him again this morning- what was I doing?  Reading him what is in the cocktail he wants Nate to have.  Because he didn’t know/remember.  I’m ready to throw my hands up and say never mind; ready to give in. 

But something made me make the call to his doctor anyway.  In the midst of all of the frustration and hopelessness, I found the motivation to call him again, and give him the list yet again.  And I will give the supplements to Nate tonight; he missed one dose, big deal.  I will keep on going.  Even though I am ready to quit and spending more time watching Nate with sadness, feeling more grief, than ever before.  My actions are another reminder to me of the strength of a mother’s love for her child- all of this work is just an expression of that love- and confirmation that love is indeed a verb. 


  1. Yes, I hear you.

    Been there many times with my son. Nothing to add.

    I just send you a very tight hug and say that we are all they have, so we need to keep trying.


  2. I wish I had something enlightening to say that will make it all make sense but of course I don't. It is a process for sure. We are all on this journey and there is no wrong way to be an "autism mom". I would gently suggest that if you are feeling overwhelmed, a week "off" from all the stuff that is stressing you out will not hurt him in the long run, supplements, therapies, etc.
    as far as the squeezing goes, have you ever heard of squeeze clothing? It doesn't have to be fancy, my OT said some people put tight bicycle shorts under their kids' clothes or like a scuba-suit type of deal. Kids that crave that deep pressure apparently really like that. Or maybe a weighted vest?
    Hang in there, I think our kids reach milestones at their own pace. He will get it when he's ready.

  3. We have tried under armour, which I have to say is kind of amusing on a 3yr old. didn't have much effect. his ot has tried a weighted vest coupled with a 5 pound belt (he looked like a super hero) and his stimming was decreased. she wanted to try it once or twice more to ensure that it was true change and not just that day, but we are moving in that direction. we have also tried brushing. thanks for your words of encouragement, it may be time for a little break. or if nothing else, to wipe the supplement slate clean, add the mitochondrial cocktail only and go from there. I'll figure it out

  4. So many things to say. Firstly what is so wrong with allowing him his comforts (*stemming*)? He wants to feel those things because thats what makes sense to him! My son has his behaviors that he *needs to feel* I give him the input when he seeks it. Only if the behavior is harmful would I see need for him to be detoured. What do you mean by your response to his stemming? I find my large exercise ball is amazing for my son when he needs to feel imput. Hold him on top and roll the ball under his belly or his back, let his heels touch the floor and roll him on top of it till he's enjoyed himself. Do you do brushing of his body and joint compression every few hours? My son really likes those therapeutic activities. I would never in a lifetime give my son medication for symptoms, I see no logic in suppression of who your child is and what they need to express, could u explain your reasoning about that? My son likes things on his face also and I can tell you that I encourage him through positive replacement. I give him an eye glass cleaning purposed towel and he loves how soft it is and adores to play peek a boo by covering his eyes or mine and by blowing up on it, it flies off. That game encourages eye contact and verbal communication. Demand communication from your son, verbal is nice but nonverbal is most important. My son gets very little of what he wants unless he looks me in the face for it. Takes lots of time and effort from the start, some days just for him to look or answer one word an hour of screaming. We got past that through consistent practice and now he has improved greatly! Every single child, diagnosed or not developes at *their own* rate, I dont push my sons to be at par with others. If you ever want to talk with me I would love to message u. Your son seems to be very much in the same boat ((age and skill level) as my jayson. Keep ur chin high and his higher! Also your son is gorgeous!

  5. Toshia, I have no issues allowing him to get input, and yes we do do brushing, joint compression, I have done massage, he goes to OT and we use compression clothing, weighted blankets, water toys. We have a swing in our garage, along with spinning chairs and a trampoline. you do realize that all of these therapies are meant to reduce stimming behaviors in other settings right? If you are doing these therapies, you are trying to satisfy your child's intense need for self-stimulation, thus decreasing it when s/he is trying to learn. his visual stimming does not stop no matter how much input he receives to the point where he does not communicate or notice any of his surroundings because it is constant. trust me I throw him, wrap him, we do a ton of water play, but the need never goes away no matter what we do. To the point where he finds his brother's books and rips the paper out of them so that he can dangle it in front of his face. in terms of communication, some of the nonverbal has improved with what I like to call my purposeful stupidity, aka, I pretend that I don't notice him unless he communicates with me in some way. If he wants something badly enough, it works. We took the Hanen more than words class last year, which is a 4 month long seminar on elliciting both verbal and nonverbal communication in autism, and since have worked very pointedly on these skills. Of course I would still hope for him to speak at some point in his life- I don't think that's an unreasonable wish. If it doesn't happen I will find a way to cope, just as I have found a way to cope with two autism diagnoses. He is now pointing a bit, but the biggest improvement has been when he grabs my hand and pulls me to the room where the object (usually food) that he wants is kept. Any supplements that I utilize to try to "calm stimming" (they are not medications per say) are because frankly do you really think that it's a comfortable life to always feel that intensity and need for such pressure? If there is a lack of something in his brain chemistry or something is making the stimming more severe (like gluten) then of course I am going to try to assist. Have you read some of the narratives by adults with autism, where they talk about how intense these needs felt and how overwhelming it could be? I am not trying to change "who he is" so much as I am trying to help him regulate his needs so that he can notice his surroundings and learn. To say that you would never try any medications is pretty presumptuous, I don't know anything about your son, or his issues, but sometimes all the therapy in the world is not enough, and no parent needs to face judgement for the things that they do and feel are in the best interests of their child/ren. I am a nurse, and I am a mom to two children with autism. I do the very best that I can, as we all do. Thank you for your comments

  6. Hey there, wasnt meaning to be presumptuous, im just super homeopathic and hate medication unless its last resort. Guess the term cocktail of meds did not hit me right. ^_^ yes I was wondering what ur take on gluten is... so u believe in its ill effects? My sons MD said that gluten free was an extreme diet, but ive read up and think it might be a good step for us. You are not at all judged by me so do not feel that from me please. I was just wondering why u do or feel this and that of what u wrote. By questions to u thats helping me see more sides to autism, its nice to learn more. Im impressed that uve done workshop on the disorder, that must have been great! How often do you post on ur blog and is it nice therapeutically? When did your second child exhibit symptoms if I may know? What were the first flags for your second child? I have three sons, the middle with the diagnosis, third one has me worried already. Did you do vaccination for both sons? Kinda holding off for my third sons couple shots so far. Does redirection work for your son that likes to dangle things (I call it getting lost), my son jayson used to walk in circles to get away from the world. The great thing about children getting all this help so young is that there is super chances of them growing out of their behaviors. I kinda lost my fear for my son once I was seeing small steps of progress. Must overwhelm with two though! I hope im not in that same position soon. I suspect I may be. :/....... sorry to sound frank I guess I haven't discussed autism condition with anyone besides the old therapists that came for a while months ago. Even that was not in depth, like sharing personal experience. So thanks for your blog, its nice!

  7. Sorry it's taken so long to get back with you, crazy crazy week. My blog definitely is my therapy, and a great way to keep a record of different interventions. I was not offended by your comments at all, but I am defensive when it comes to my kids, just can't help it. OK, that was a lot of questions.
    Gluten- I don't think it's the be all end all of autism treatment by any stretch of the imagination. I do know that it does not harm, and that is my primary motivation. Both of my boys showed sensitivity to gluten on their blood tests. I have seen some differences, but nothing huge. At the same time, when I read about what is done to wheat these days, I am not anxious to reintroduce it any time soon. The genetic modifications and other treatments that occur- no thanks.

    My second son, and my hardest job regressed (very obviously) at about 19 month old. I say 19 because he technically "met" his developmental milestones at his 18 mo checkup, even though I was already growing concerned, and within 6 weeks had NO speech. And no matter what interventions we have tried, there has not been much improvement. He will gain one or two words, and at the same time lose one or two others. It is very frustrating. My boys all had their shots on time. I would do it differently if I could go back- no withhold, but space them and give periods for recovery and observation in between. We started Nate with a compression vest and weighted belt today- he looks like a sumo wrestler, ha

  8. Hi Jenny! I just found your blog... wow it so speaks to me. I myself have two on the spectrum and it's hard some days to feel positive. I understand that. I personally have tried Melaleuca supplements with my children and have seen a huge difference in the first month. I started them last July on the vitamins (have over 85% absorbablility) and when they started back to school in the fall - the teachers were commenting and asking what I had done. My only change was their multivitamin. I only hate the fact that in order to get the vitamins you have to become a regular customer in order to get a discount! :( If you were interested at all in reading along some of my blog - Chin up and big hugs! I know you are a spectacular mom. I can hear it in your words.