Monday, 3 February 2014

Mommy Crisis: How Can I Really Help My Kids???

This past week has been really rough on my spirit.  I am literally feeling lost- I don’t feel like I am heading in a good direction with either of the boys right now.  I have many times in the past, but little things from every intervention I have tried have stuck individually (different for each kid), leading to a hodgepodge of different supplements, therapies, medications and other interventions.  This would be ok if I felt like we were in a good place, but I don’t.

I’ll start with Jack.  He was off of Namenda (memantine) for nearly three weeks.  He has been having the early morning awakening (and by early I mean up for the day at 2:30am) at least 3 nights a week.  Another characteristic also reappeared, which is worse than the lack of sleep.  It’s one I never really talked about over here- because it upsets me so much.  Jack has started saying really mean, scary things.  “I will set our house on fire”, “you are going to die”.  NOW- I want to make clear that much of this is scripted, I in no way think that he would do or ever even seriously think of doing these things.  It’s not now that I am worried about though- he’s growing right?  So what happens when he’s bigger?  What if he starts to internalize these things?  It’s a huge fear.  It’s something that I think I had kind of blocked out from before we started Namenda.  I never connected that this stopped shortly after we started the study.  Finally on Friday, I called our pediatrician in desperation and asked her if she would prescribe the medication.  She had the script ready within the hour and called the compounding pharmacy ahead to let them know we were coming.   Namenda is not commercially available in the dose Jack was taking for the study- it’s too small.  I really didn’t think I was going to do this- but lack of sleep combined with fear for my child pushed me over the edge.  Bottom line, it’s a quick fix, but I don’t feel like I am doing the best thing for him in terms of the big picture. 

And then there’s Nathan.  If you recall, about 2 weeks ago I was about ready to burst because his speech was coming along beautifully.  At the time he was on antibiotics and he was on fluconazole.  He completed the course, and for maybe 10 days, things continued to go really well.  And then about a week ago, he stopped repeating as much.  He makes this cute face that would have you believing that he is just messing with you.  I don’t believe that to be true- I think he is unable to make the connections he was making a few weeks ago.  I could see him refusing to speak maybe once or twice just to be funny, but he is doing it all the time.  Some words are still coming- it’s not the same.  I would be lying if I said I wasn’t devastated by this change. 

So here’s the thing- who exactly am I supposed to ask about all of this?  Seriously, think about this.  If your child had a neurological condition, you would consult a neurologist, a gastrointestinal issue you would consult a GI doctor.  There just is no autism doctor out there.  Sure, every modality has “theories”- psychiatrists, psychologists, GI doctors, general practitioners, DAN doctors, neurologists, chiropractors, educators, homeopaths, OT’s, speech therapists.  just to name a few.  Most of the time their ideas do not mesh with each other’s.  So how is a parent to choose what is right?  The neurologist on Nate’s study doesn’t think he needs a mitochondrial cocktail.  The DAN doctor would disapprove of me giving my child a medication because it’s not treating the underlying issue in their eyes.  Other practitioners think ABA is THE answer.  Chiropractors believe people with autism need to have their brains “balanced”.  Who do I trust?  WHAT DO I DO NEXT??????

Oh and did I mention the other part of the autism community?  Adults with autism?  Who become furious with autism parents who are trying to “fix” their children.  Any of these interventions are at times considered inappropriate or offensive to this part of the community.  Even other autism parents are horrible to each other in this regard.  If a parent questions a new therapy that has worked for another child, they are judged for that, they are not doing enough, or are unwilling to accept "progress".  Or, if another parent does not believe in the therapy that a parent chooses they are judged for that.  And the sad part?  Most often there is no therapy that helps all of our kids.  So we are all right, and wrong.  Everyone is dealing with a similar menu of options, picking and choosing what they "think" is working best for their own child. 

Can autism therapies and treatments get any more confusing for parents who just want to do the right thing for their children?  We just want someone to tell us what our children need.  No one really knows.  There are many theories that are developing which I truly believe will lead to breakthroughs in the future.  They are not there yet.  There is not a “trusted” treatment among these cutting edge therapies. There is not an modality that a parent can choose that will not draw criticism from someone, somewhere. 

Once again, I would be fine with the criticism if I was confident in what I was doing.  I’m NOT.  Right now, I want someone to tell me what I should do for my children.  And when they say it, I want it to make perfect sense- I want all of the physiological theories to fall into place, and I want to see major improvement.  That is what I want.  And that is not an option.  I have to find a way to trust myself, or a practitioner.  I need to find direction.  I need help.  I am tired of floundering. 


  1. Hi, I've been reading along now and then, and I wanted to tell you that I hear you. I hear everything you're saying and i know that you're working so hard for your sons. I hate that world of judgement that makes us second guess ourselves, when really, we're doing the best we can do. I believe that. You're asking for someone to tell you what to do. Well, I can offer a humble suggestion: trust yourself.

  2. I don't really know you (I'm a friend of Sarah's) but I do read sometimes... and i too have two autistic kids... and my son will say things like that. I say this because I hope it makes you feel less alone. I cannot tell you what to do for your kids.... I do not always know what to do with mine... but, I do want you to know... you are not the only one. I am thinking of you, sending love, and no judgement, and I echo Marnie: trust yourself. (P.S. FWIW Abilify helps my younger with both sleep and the scary statements and thoughts, though it isnt 100% ... is anything?)

  3. As far as Jack- maybe it's an anxiety? I know Asperger's and anxiety run together often. If he's scripting then maybe he's scripting what he is scared of will happen, not what he intends to happen. As far as Nathan- I know the pain of regression. Sophie also seemingly has difficulty making connections or if she makes, difficulty maintaining them. Her difficulty is perhaps explained by her brain structure but who knows? It's not like there is a line between her autism and her pmg- they are interwoven together, we don't know exactly what causes what.
    As far as your sanity... I've let go. it's not the same as give up. Just- release. Accept certain things are beyond our control and just do the best we can. I made peace with the fact that Sophie's condition is permanent and that her brain is just wired differently- I see it in the way my youngest picks up skills- I don't have to "do" anything. He just learns! Perhaps there isn't much to "do" with Sophie either- just live. But no judgment- we all fumble and find our way and make our choices... I don't think there is "the one path". we all find our own.

  4. I wonder whether you have tried Baclofen and Bumetanide ?
    I also feel the same, I tried everything and nothing seems to work for our boy. It is very frustrating, and sometime I feel giving up is not a bad idea.
    Maybe we shall really accept that for the time being this is the way for autism.
    For the future, maybe some novel treatment will turn up.

  5. Thanks guys for your words of support. I will get there- I think we have outgrown our current dev. ped, I think it's time to move on. Today, I am going to focus on the fact that Nate is finally going for his private speech evaluation

  6. My prayers are with you and your family that you can connect with people and information that will help your boys. Please know that you are not alone that there are many places for you to connect with for support. Twitter and Cafe Mom as well as many other mom blog communities have loads of information and links to organizations focused on Autism. Best of luck xoxo

  7. Autism is a neurological condition, it is just all of the knowledge is still at the research stage. As one of the previous comments suggested, an old drug called Bumetanide is showing great promise in trials in France. I read the research and tried it in my 10 year old son with the severer kind of autism. The effect was remarkable. The drug is safe, it is even used in neo-natal babies. We have used it for 18 months. Bumetanide will be approved for autism in Europe in about 4 years, but not in the US, it is just too expensive and the drug is generic so who is going to pay for what the FDA wants? Bumetanide is available today all over the world. It is a diuretic, but in the brain it affects the NKCC1 transporter and this changes how GABA, a key neurotransmitter in the brain, functions. The drug is cheap, I pay about $2 a month. So if it costs millions of $ for approval in the US, it is not surprising the French researcher has given up. If you are interested just google "bumetanide autism". It changed my family's life, may it can change yours.