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The Diagnosis Battlefield

Jun22

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Advice Smackdown ArchivesAmalah is currently on maternity leave. In her absence, however, she’s just as tethered to the computer as ever, and will be using this space to ask you — our intrepid Advice Smackdown Commenter Crew — questions. What’s been baffling her, as a parent, you may wonder? Why, she’s so glad you asked!

Dear Internet-Wan Kenobi,

So we’ve been dealing with a myriad of developmental hiccups, special needs, therapy plans, interventions, and diagnoses (and the myriad of family-and-friend REACTIONS to all those things) for almost four full years now. I’ve been openly blogging about a good 90% of that stuff for almost four full years now too. We should be champs at this, right? Or at least not…cowards about it, right?

But here’s the thing: No one in our family was very, well, familiar with a lot of the labels and thingies we were dealing with, especially once we moved past the relatively simple realm of “speech delayed.” Sensory Processing Disorder? Dyspraxia? Hypotonia? Oral defensiveness? Pervasive Developmental Disorder Not Otherwise Specified HUH WHAT NOW?

So for the most part, family members whom we have regular interaction have with more or less trusted our judgment and guidance when it came to All Things Noah, from discipline to approved foods and activities and all that. But along the way, we’ve certainly gotten an earful about Other Children and Other Parents and Other Diagnoses — namely, ADHD.

My in-laws have a lot of opinions about ADHD. The first and foremost being that it doesn’t exist, that it’s overdiagnosed by parents and schools looking to drug up children, that it’s almost 100% caused by a bad diet and eating the wrong things and toxins, that ADHD children simply aren’t given boundaries and are spoiled, etc. etc. etc. Oh, no matter how many times I’ve told her that she’s repeating some kind of special education urban legend, my MIL is convinced that public schools are allowed to “force” you to put your child on Ritalin, against your will and even your doctor’s advice.

So…we haven’t exactly told them that Noah was diagnosed with ADHD yet.

Now, here’s the thing: We aren’t in any rush to try medication. It’s not something we will rule out in the future, but it’s not on the table right now, at his current age and grade level. We HAVE made significant changes to Noah’s diet already (zero food dyes, artificial flavors, preservatives) and are currently experimenting with an elimination diet targeting refined white sugar and flour. And several homeopathic remedies that may or may not be a load of overpriced snake oil, but hey, they’re worth a try. Noah will be seeing a therapist regularly to help him with his anxiety, attending OT summer camp, starting kindergarten with some really fantastic supports and accommodations in place, basically: WE’VE GOT THIS. And I think we’ll do a pretty decent-ish, open-minded and educated job.

But I don’t think it will ever be enough for them, you know? I’m terrified that once they “know” the new “label” we’ll NEVER HEAR THE END OF IT. The undermining comments, the takeover-y diet attempts (they still don’t believe us that yes, we tried it, but no, it’s NOT GLUTEN), the sending us books and links that support the more — ahem — quackery end of ADHD and ASD treatments, the overstepping with discipline…gah. Stuff we’re already seeing more and more lately and have been struggling to re-draw the boundaries around Noah and his health and behavior ALREADY.

So…I don’t even know what my question is, exactly. Does anybody else have a similar experience? What did you DO? Or say? Did you ever just…stop offering information about your child’s progress? Or did you continue to send your own books and articles and hope that eventually the person in question would accept YOUR approach and stop pushing so hard for their own?

Leave your thoughts, suggestions, sympathies and counterpoints in the comments section.

About the author

Amalah

http://www.amalah.com
Amalah is a pseudonym of Amy Corbett Storch. She is the author of the Advice Smackdown and Bounce Back. You can follow Amy's daily mothering adventures at Amalah. Also, it's pronounced AIM-ah-lah.

If there is a question you would like answered on the Advice Smackdown, please submit it to amyadvice@gmail.com.

Amy also documented her second pregnancy (with Ezra) in our wildly popular Weekly Pregnancy Calendar, Zero to Forty.

Amy is mother to rising first-grader Noah, preschooler Ezra, and toddler Ike.


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33 Responses to “The Diagnosis Battlefield”

  1. Kelly F. Jun 22 at 11:43 am Reply Reply

    I don’t have the intense and challenging job of establishing a Plan for a special needs child, but my gut instinct would be to dial back on the amount of info I provide to family who are pushy or judgy about things. If you think telling them may lead to a better understanding of Noah and provide some benefit to Noah, then share. If you think it will lead to questioning his diet/discipline/future meds, then don’t share the diagnosis. I know that might feel wrong or be difficult but that would be my inclination. Best of luck to Noah in kindergarten this fall! :)

  2. Susan Croft Jun 22 at 11:43 am Reply Reply

    I may be a little naive here, but is this something that MUST be discussed with the grandparents? If they don’t believe there is a real problem, why should you debate it with them. He is their grandchild and (I assume) they will accept him regardless. As to his diet – you are the Mom and he gets to eat what you say he gets to eat. It may be a little difficult, but I would think offering no explanation would be easier than offering an explanation you know they would judge and analyze to death.

  3. Amy Jun 22 at 11:45 am Reply Reply

    Dealing with family certainly is a very tricky and potentially volatile event.  Especially where the family is of the ‘in-law’ variety (at least this is true in my case).  Navigating all the potential issues can be exhausting and I imagine this is only complicated by your (justified) efforts to protect your child from their opinions.

    I really do sympathise with you here and can only hope that my ‘solution’ might go some way toward helping in yours.  I realised that I needed to set boundaries with them.  It was hard and certainly made things uncomfortable for a while but it simply isn’t okay for them to second guess your parental choices.  They are naturally entitled to their opinion assuming;
    a) it isn’t voiced in front of your child and
    b) it isn’t expressed as an ultimatum or as a trump card
    In these situations, nobody wins but everyone can come out of it on a level playing field with an understanding of what is and isn’t acceptable.  
    In our world I had to speak to my FIL which was tough given that I am an Alpha female and he is an alpha male and between us we’re pretty full on.  I did a lot of soul searching and wrote notes to myself about being clear on what I wanted to achieve and where I was willing to bend in order to achieve the outcome.  I also however had a conversation with my husband wherein we we clear on what we were willing to risk in order to achieve this peace because it could have gone completely wrong forever and our children would then have lost a set of grandparents.  In the end (after weeks of the cold shoulder) logic prevailed and we have since found a way to live side by side.  We can now discuss these things in an adult manner and when they start getting fraught, we can end the discussion because we’re both clear that it is no longer constructive.

    I do wish you all the best.  My final point would be that as the parents you guys do know best.  Sometimes that is enough to live through the criticism (although I would definitely enforce the ‘not in front of Noah’ part at the very least).

  4. the grumbles Jun 22 at 11:47 am Reply Reply

    No personal experience here but I’m with Kelly. You guys are clearly on top of it and focusing on what’s best for Noah. Right now telling them every detail might NOT be what’s best for Noah. Not that I think you should lie, or mislead them, but… I wouldn’t exactly volunteer any additional information either. Just another one of those situations where you have to assert that you (parents) are the boss and not them (grandparents) but you appreciate that they care. You know the drill.

  5. chiquita Jun 22 at 11:55 am Reply Reply

    Easy, don’t tell them. If they can’t butt out, then they don’t get all the information. Sounds like they (she?) are annoying enough already, without knowing about the diagnosis. You are pretty eloquent about protecting your child. I think this is a clear cut case where they aren’t on the “need to know” list.

  6. SarahB Jun 22 at 11:57 am Reply Reply

    I think a little sit-down with the ILs might be in order, and I think, given all you’ve been through in the last few months but also in general, your husband needs to be the one to do it.  

    He can let them know, briefly, what’s going on, that you both feel good about the plan in place between Noah’s doctor, the school system, the camp, etc, and that what you really need is support as opposed to advice.  He needs to lay out some boundaries about deferring to you both as Noah’s parents when it comes to diet and discipline, especially as it seems to have been a problem before.  

    And then, if they’re pushy and obnoxious, he can refer back to that conversation and/or shut down the conversation.  It may become a topic that you just don’t discuss with them.

  7. Brandi Jun 22 at 12:15 pm Reply Reply

    First off, i’m sorry you have to deal with this crap Amy. Now, what I would do is have Jason be the messenger here. He would call them, tell them the diagnosis then say in no uncertain terms, we know how you feel about this,but we’re doing what we can and what we’re comfortable with and if you don’t have anything supportive to say then don’t say anything at all. And that any meddling in the future will be met with ending the conversation or visit right away becuase you don’t need that from people who need to trust you as the parents. I would also immediately
    trash or delete any articles, links etc with out even reading or acknowledging them. Think of them as annoying political emails. Yeah, you can link to snopes with the truth but people are going to believe what they want to believe and your time and energy isn’t worth trying to convince them otherwise. Good luck Amy! I hope that the re-boundarying will go well and get them to step back once and for all!

  8. Susan Jun 22 at 12:20 pm Reply Reply

    My daughter is 16 months old so I’m not an expert in the parenting side of things but I am a therapist with many years of experience in working with special needs children. My sense has always been that the diagnosis- the name itself- is really only useful to those who understand it. Your in-laws already know Noah’s behaviors and symptoms. They’ve demonstrated very little understanding of the diagnosis, so why bother with that part? 
    I’ve noticed that my pediatrician has taken the same approach with general health concerns. Who cares if it’s the flu specifically? She has a fever. Treat that. We get so caught up in NAMES sometimes and they’re not always that important.

  9. Mouse Jun 22 at 12:21 pm Reply Reply

    My in-laws completely changed their tune both after E. started OT (and made noticeable improvements) and  we moved closer and they got to spend time with him regularly (and, therefore, got to see the range of issues).  I get that moving just for the purpose of getting them to understand is not practical, but it has meant we can have real conversations with them about his challenges and not have them pass it off as us being over-anxious.

    Before all that, A. did explain to them one time that they needed to stop telling us we were worrying too much and that he didn’t need any help or supports.  To their credit, they did stop.  And after all the stuff in the first paragraph happened, my mother-in-law told me how glad she was we had persisted in getting E. help.

  10. Susan Jun 22 at 12:22 pm Reply Reply

    And also- that just sucks! They really should be more supportive about this. Like it’s not hard enough already.

  11. jodifur Jun 22 at 12:59 pm Reply Reply

    I have never told my inlaws one thing about Michaels struggles or diagnosis and I don’t plan to.  I just wouldn’t tell them.  But that’s me.  If you feel you must, than I would let Jason do it and also explain their opinions are not welcome.

  12. Moosilaneous Jun 22 at 1:14 pm Reply Reply

    Sounds to me like you are doing a great job!

    Susan has it right, names don’t really help except those who already understand what they entail. It is the behaviour that matters, and what approaches work, not the label. 

    Nevertheless, it might help to have your husband ask the ILs to scale it back a bit on the “helpful” suggestions. Your little family has enough going on. 

  13. Katie Jun 22 at 1:25 pm Reply Reply

    I’m making the assumption that surely your in-laws realize that Noah has some behavioral issues. I’m giving them credit, as family members who have acted as babysitters/caretakers, that these issues are indeed, “real.” If that’s the case, than I totally agree with Susan. There’s no need to share the fact that while Noah’s struggles persist, the official “name” has changed. Fight that battle only when/if the grandparents are in a position where they are caring for Noah and you’ve chosen to medicate, and there are drugs involved. Also…if you ever go the drugs route….it’s amazing how many of my family members changed their tune about how “it was just colic” when they saw the marked improvement in my son after starting reflux meds.

  14. Kat Jun 22 at 1:32 pm Reply Reply

    This is interesting, especially considering your last post regarding the friend with the mean kid. A lot of kids have issues and when you share you get lots of “help” and “advice”. When you don’t share you get your last post..”that kid is a brat and someone should talk to his mother (not father, of course)”. I find this is a fine line, even as your kid gets older and as my kid has, more stable in his behavior. It still comes up and you have to share with soccer coaches or a new teacher, or friend. They are never surprised but the best you can do is be confident that you are doing the best you can for your kid. I used to say to my parents and his teachers “we have a team of people helping us”. That usually took care of it..

  15. laura Jun 22 at 1:49 pm Reply Reply

    my family has a shit-ton of issues too (and my 9-year old & noah are nearly the same) and i’ve learned if someone can’t handle it, don’t share it. we do a lot of self-preservation here.

    and for what it’s worth, we opted out of doing ADHD drugs too, we take him to the chiropractor at least weekly, who also recommended 5HTP. it takes just enough of the edge off to handle, and he goes to bed super-early to read, which helps a ton too.

  16. JB Jun 22 at 1:56 pm Reply Reply

    @Kat, I think that is apples and oranges. If another child is mean to your own one, it’s not out of line to talk to his mom – SINCE THE MOM IS YOUR FRIEND, NOT THE DAD, in this example – and mention it. If the mom then says “oh, Bobby has some developmental issues, and we’re working on them” then you can say ahhh ok no problem!, I just wanted to let you know what happened this afternoon when Bobby hit Susie, etc.

    In THIS, completely different, case – talking to your IN-LAWS about Their grandchild, is completely different than talking to a buddy about their own not-related-to-you child, wouldn’t you think?

    –My advice in This case would be that you don’t need to tell the in-laws everything, except what they need to take care of him. They aren’t necessarily privy to his medical information. And when he gets older, he may not wish to have his medical conditions discussed with grandparents, etc.

  17. Carrie Jun 22 at 2:01 pm Reply Reply

    I don’t even have a special needs child, and I really control the info people get about my kids. They don’t need to know how much they sleep, if they are circ’d, how often the baby nurses, how much screen time they get, ect. Once I realized I wasn’t obligated to share all this information my life got a lot easier. I say keep it on the downlow unless you have a compelling reason to tell them. It will make your life less stressful.

  18. Babs Jun 22 at 2:53 pm Reply Reply

    My husband has headaches from an incident years ago. There is no physiological reason he gets them, so the family sends and offers mucho advice on migraines (which they are not) and dehydration (REALLY??) and other head related issues. So, yeah, we get it.

    As for your son, why do you have to tell them chapter and verse of his diagnosis? I mean, isn’t Noah entitled to some privacy regarding his challenges? I say that because I have the most Second-Guessing in-laws in the known world and I figure my kids don’t need their second-guessing all the time. So when our kids have a mystery illness or even when we found out our son has behavioral issues (he’s too young to be diagnosed just yet, but it’s THERE, ya know?) we didn’t even tell. They don’t live nearby, so we just do what we do, and that’s that.

  19. Kira Jun 22 at 3:38 pm Reply Reply

    My daughter is just 17 months, and so I can’t really address your years of negotiating this territory.  BUT, my 17-month old daughter does have a slight speech delay.  We have decided to wait on any kind of intervention since her comprehension/motor skills are “on track” (whatever that means).  She also uses sign language.  Fast forward to a visit with my extended family, who do not see us very often.  We spent a weekend with my aunt and uncle who are CONVINCED that the reason my daughter is not using words is because we are using sign language with her.  Now, they happen to know about her speech delay because we told them.  If we had not told them, I think that they would have simply gone along with the sign language without making a big deal of it.  So their knowing the “diagnosis” actually made them less supportive of our current course of “treatment.”

    My recommendation to you would be to assess the level of support that you can expect from your in-laws if you tell them versus don’t tell them.  Pursue the option that will best serve Noah.  HE is your responsibility.  Their reaction is not.  I would be most concerned about your in-laws reacting and responding to Noah in a way that might make him feel bad or insecure, particularly as he learns more about his own diagnoses.  

  20. Amy Jun 22 at 4:14 pm Reply Reply

    I don’t think I’d tell them. And if, at some future point, they found out and were like, “Why didn’t you tell us?!” I would say, “Knowing how you felt about ADHD, I didn’t want Noah’s diagnosis to affect your relationship with him.

    Health information is private and federally protected as such for a reason. We don’t have to share everything.

  21. Cary Jun 22 at 4:36 pm Reply Reply

    It is not their business, it’s his. Not only do you owe them nothing, I would be careful to let him know that you understand that this is his personal information to share, and outside of doctors, therapists, teachers you will always seek his approval before discussing it. I highly recommend Disability is Natural, especially now that you are entering the school age years. Also, ask your OT what they think about listening therapy. Good Luck!

  22. anon Jun 22 at 5:18 pm Reply Reply

    mmmm . . . aren’t they going to see this question?

  23. Brooke Jun 22 at 7:24 pm Reply Reply

    I found it helped when we invited my MIL to be a part of the different therapies/classes/informational sessions with us. There was one particular intervention that we had (PCIT) that helped us a ton, and she was able to observe us practicing with the therapist, and then we also invited her to observe OT sessions, etc.. and then she saw the difference in behavior first-hand, as well as felt more involved with the solution…. in our case, MIL is our only babysitter, so it was reeeeally important that she have the info about him, and once she was involved, it was helpful too because then she kept thing consistent….

  24. Cammie Jun 22 at 9:55 pm Reply Reply

    I was diagnosed with ADD when I was a kid.  I grew up hearing all the “you just need to be slapped more/You are spoiled” crap.   Trust me, NOT the case!  It is a true “condition” (I hate the word “disability”).  I reality, it’s just that the brain needs to re-route information some times, and it’s a bit harder, but not impossible.  I’ve been on and off of different meds during my life and I have chosen most of  my life to go w/o meds.  

    At this point, I’d say don’t fil in the in-laws.  If it comes to a point where you think something MUST be said, I’d let your hubby do it.  If they contact you to talk about it, or start any mess, direct them to your hubby.  I have a difficult MIL and I tell my husband all the time, she’s yours.  You deal with her.  If my family is difficult I deal with them. Seems fair, and the best way to go.  In-laws always tend to take things better from their own family vs. the son/daughter-in law.  

    You are VERY on top of it, be proud of that and focus on your little one.  Any added stress anyone wants to offer up to you isn’t going to be any part of the solution.  

    God Bless! :)

  25. blackhuff Jun 23 at 2:38 am Reply Reply

    My in-laws also have the similar feeling towards ADHD and it have been difficult. We don’t talk to them about his condition neither do they with us. We just don’t talk about it at all with them. My parents on the other hand are completely different surrounding our son’s ADHD. They even take him for therapy sessions etc. 
    Sorry to hear that you have parents like I have with my in-laws. It is not easy, I know.  

  26. Hillary Jun 23 at 10:39 am Reply Reply

    Amy, just reading this post made me adore you even more – you are such a positive role model. Seriously. There are so few people who openly confront developmental issues in their children. When my daughter started getting diagnoses (hypotonia, developmental delays), I found your advice to be extremely helpful and the way you dealt with Noah was really comforting. There is no reason to be ashamed that our children have illnesses, but it is sometimes really hard to admit it, ask for support, and endure potentially unwelcome advice.
    Perhaps with your in-laws, you can rope them in as part of the coordinated effort to manage Noah’s ADHD. I think if you take a defensive stance now, then they will just push harder on what you need to do differently. Why not confront this head on and bring them up to speed on what you’ve learned, what you’ve done, and what you’re planning to do? Maybe even go so far as to ask them what they think? Let them say their piece (pieces?) and don’t ignore what they’re saying, just ask them for references for their opinions. When they’re done and they feel included, then you can go on your merry way and either keep them updated on how your treatment plan is progressing, or don’t.
    I think maybe the reason you’re keeping this private is because you think you know how they’ll react, and because maybe you’re a little bit worried that they are right – ADHD IS an illness that science does not well understand, so treating it is a little like hitting a moving target. Which isn’t to say that you’re managing Noah’s illness poorly, just to say that it is reasonable to not have 100% confidence that your plan is best, which could be why you’re nervous to discuss it with potential doubters. You’ve spoken very positively about your in-laws before – maybe let them in to what has developed and even share your own uncertainty. They love Noah, they love you, they want what is best for you both. If their advice becomes constant and undermining, you can probably tell them that, too. I hope things get better!

  27. Amy in StL Jun 23 at 11:36 am Reply Reply

    I have to admit I didn’t think ADHD existed either. The kids I knew with it seemed just kind of undisciplined and spoiled. However, I’m not dating a 42 year old man with ADHD. I can’t imagine how tiring it was for his mom back in the 70s dealing with this. He is not lazy, he’s not undisciplined (dude is paying off his house in 15 years) but he is, um, scattered. He can’t take most meds because of glaucoma, so we just kind of muddle through. I get why it’s frustrating for them and I’m sure they want to help; I hope you find something that works so that it’s easier on everyone.

  28. professormama Jun 24 at 1:24 pm Reply Reply

    I think the name ADHD does have a stigma attached, and it’s a weird label because like Autism or Asperger’s, there is a RANGE of severity and symptoms.  My son is just finishing kindergarten, and there are 2 kids in his class with serious developmental issues (requiring each to have their own aid at all times).  I don’t know what their diagnoses are, and I don’t need to, it’s not my business. The school and parents are doing everything they can to help these kids.  My son has gone over to one boy’s house for a couple of OT supervised playdates, and he had a great time. Again, I don’t need to know the kid’s diagnosis, it’s just not my business. My son understands this little boy has some big challenges that he’s working hard to manage, and that’s enough. My kid doesn’t care what the name of the diagnosis is, and he doesn’t see the little boy as “sick”, we are all just different.  
    The less Noah gets labeled, for other people, and for himself, the better I’d say.  I know there are some kids whose diagnoses are improved or even resolved with drastic diet and routine changes, but not all kids. If the in-laws ask about things, just don’t discuss the labels, and talk about the things you feel comfortable sharing.  The mantra for everyone (including them) should be about doing everything possible to help each of your kids with whatever challenges they face, in the healthiest way possible. We’re all unique, and even kids without medical labels have challenging times to get through.

  29. Abi Jun 24 at 3:54 pm Reply Reply

    I’m not a parent, but I was diagnosed with ADD in elementary school, and started taking medications for it around age twelve. I remember my mother sitting me down and telling me not to tell my grandmother about it, because my grandmother was prejudiced in much the same way that your relatives are. It broke my poor heart to think that my own grandmother would think so poorly of my parents’ judgment, and not believe that they were doing their best to take care of me. The reason they didn’t want me telling her was not because they didn’t want her to eventually know about this, but because they knew if I was the one how told her, I would be the one she would argue with it about. That’s right, she would say these mean things TO ME, a poor child who had no idea that this drug was so controversial, and was so super excited that I finally had a chance to make my life work.
    Of course, they did tell her eventually, but they wanted to make sure that they were in control of the situation. She never spoke a word to me, luckily, and I made sure to affirm as often as possible, my parents actions in this instance. Once they were hearing from me how happy I was about it, they were very supportive.

    For what it’s worth, my diagnosis (not just the medication) really turned my life around, and I am SO glad that my parents put me through the testing and put up with crazy relatives to give my what I needed.
    It is obvious that you are doing everything you can to take care of your son. It’s not an easy job, so don’t be afraid to tell your relatives that if they’re not for you, they’re against you, and you don’t have time to deal with people who aren’t going to be supportive of Noah. Don’t be afraid, when you tell them about this diagnosis, that you know how they feel about ADHD, and that the subject is not up for debate, you are perfectly capable of doing your own research.

  30. Brooke Jun 24 at 6:07 pm Reply Reply

    http://psychcentral.com/blog/archives/2011/06/24/9-myths-misconceptions-and-stereotypes-about-adhd/

    Not necessarily relevant to the question itself, but it was just posted today and might be timely for you. :)

  31. Jamie S Jun 24 at 8:17 pm Reply Reply

    I agree with Susan the therapist.  Include them in managing the behaviors associated with ADHD, but don’t necessarily tell them the label.  I was labeled as ADD in Elementary school, and always felt embarrassed about it.  I feel that in some cases I would’ve been treated differently if people hadn’t known…appreciated more for my positive attributes than some negative behaviors.

    I took medicine in elementary school (Ritalin), but personally I remember disliking the side-effects even in the second grade (lack of appetite, difficulty sleeping, feeling on edge).  The drug helped me to settle and be focused, but I chose to stop taking medication in Middle School.  It was much harder without medication, but my parents supported my choice and I learned to behavior modify and compensate for my weaknesses.  Medication is not for everyone, but it can work and be very helpful.

    If you do tell your in-laws the diagnosis, be sure to not dwell on the label, but really focus on the behaviors concerned and your plans to correct the behaviors.  Even if they chose not to believe ADHD exists, hopefully they will not be able to deny the presence of some behaviors and the need to help Noah in that regard.

    Good luck!

  32. Angela Jun 27 at 12:48 pm Reply Reply

    I like the suggestions to just not tell them the label. Sometimes that can get in the way as people have a lot of baggage attached to certain labels.

    But in my own examples, I’m an extremely, er, sharing person. Some would probably say OVER-sharing. But I’m honest and open on my blog (which is primarily for my family), facebook, twitter and in RL conversations as well.

    My mother is the biggest giver of unsolicited advice in our universe, but there is no way I’m holding back telling her stuff. (I think it’s actually a biological impossibility for me.) So I have adopted the following phrase:

    “Thank you. We will take that under advisement.”

    And if it comes up as a “why haven’t you tried xyz yet?” I use:

    “We’ve spoken with the pediatrician/physical therapist/etc and are following the best practices suggested.” Or something like that.

    For some reason, telling them we’re following doctor’s orders seems to help. Whatever. I’m sure my years of parenting my actual kid won’t count as experience till I have my own grandkids.

    Oh, and since it’s your inlaws in your case, having Jason on your side so they’re getting the same line from both of you is probably key no matter what you decide to do.

    Good Luck!

  33. Karen Jul 07 at 2:07 pm Reply Reply

    I am so sorry you are going through this. Being the parent of 3 adopted and challenged children I can totally empathize.
    Our son in question that is now 20 was our “blooming onion” as I like to put it….seems you had to peel away diagnosis after diagnosis.
    I also felt it was important that my parents understand the diagnosis/s (or labels as some put it) but not for labeling purposes – but for the symptoms/care aspect. For them to understand his sensory integration issues they needed to know there was a condition – namely for his safety and well being when he would stay with them (He didn’t feel pain with sensory integration disorders).
    BUT the specific name/s weren’t the issue…it is the acknowledgement that there is something different with your child that requires different responses/attention that a child that doesn’t have it. I did have a hangup for awhile that they didn’t trust my judgement…I later realized that my parents not acknowledging wasn’t an issue with me…they were brought up in a time period there weren’t all these ready-made labels and you just carried on regularly. It took MANY MANY years for them to finally talk with us (15 years as a matter of fact) and only then about some challenges they saw. Your child is a growing ever-evolving little miracle that will be different from everyone….just like all of us. My 17yr old daughter with mild CP told me the other day that she is glad she has CP because it has allowed her to experience love, caring that others don’t feel….and that she has has had so many opportunities (camps, trips, public speaking and one-on-one with kids) to help other kids/parents with these challenges. She was awarded youth of the year in our city for all her volunteer efforts and has helped to pave the way for education/tolerance for others.
    Best of luck and prayers on your journey! Just love them!

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