Things I Can't Say

Tips and Tales from an Introverted Mom

Pour Your Heart Out: A Long Road

ppd nos

My Bear

We wanted answers.

We wanted answers so that we could get help.

After years of being told that we had to wait for the lead to leave our middle son’s system before any other diagnosis could be given besides “lead poisoning,” I had finally had enough: we couldn’t continue to play a waiting game with our son.

Instead, we needed to know if there was anything else that could be done to help him to better be able to function in social and academic situations. So that others could see him as the sweet child that he can be, not just as a problem.

So, we went about the long process of evaluation: paperwork, questionnaires, doctor appointments, referrals, more paperwork, psych appointments, more questionnaires, evaluation, consultation, results.

All leading to a new term for us as parents to have to learn: Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS).

Do we understand it? No, it’s only been a week since we heard this latest news.

Does reading about it help us understand it? No, there are too many conflicting definitions, too many conflicting opinions, so many different ways this can show itself in a child.

Do we agree with this label? We don’t know. Maybe. No. Yes. We don’t know.

We have some next steps to take and additional therapies started for my son.

But, we’re uncertain where this will all lead. What all will come next.

It feels like we’re already been on a long journey only to find that we didn’t travel all that way to get to the end, but merely to reach the starting line.

And it’s exhausting.


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Comments

    • More questions equals to the fact that the main diagnostic reason may be false, and it could lead to another issue, I just hope its something that can be fixed without any real troubles.
      I wish him the best of health in life.

  2. Oh, sweet Bear! My heart goes out to all of you. I have been at one of those finish lines that turns into a starting line to a marathon when I wasn’t expecting or prepared for it too but it was involving myself. I can’t even imagine what it would be like for one of my children. Just know that you have lots of love and support if you reach out and either accept the offer or ask for it. I hope the new therapies will help and I hope you continue to learn more about this diagnosis and let the smile of Bear shine through more often because it is a beautiful sight to see! Much love!

  3. I’m sure it is exhausting. I’m so sorry that you are having to go through this.

    Hey Shell, I’m trying to link up today, but I am having a back link problem. I do have your button on my page, and it does link back to your page. What gives? Can you help me? Thanks!

  4. I JUST went to a meeting yesterday where we learned about PDD NOS. It doesn’t seem very definitive, admittedly, but even the experts are still learning. The presenter described it as having some of the same characteristics of diagnoses from the autism spectrum, but not ALL of any of the other named disorders. I am sure “PPD NOS” will be named for someone or something soon so, although I know it is frustrating, I wouldn’t worry about the name of the diagnosis too much. I’m just glad to know you are getting some help for him and the dignosis will help you in getting services! Best to you and yours 🙂

    • It just seems like a catch-all for kids whom they know are struggling, but don’t really fit anywhere else.

      • By the way the gentleman talked at our meeting, it is a way to identify something is wrong and get help although he doesn’t exactly fit into one of the other disorders. It’s a good thing! I hope this is a step in the right direction for you 🙂

  5. As I’m sure you know, the interventions themselves are more important than the diagnosis. No doubt the additional therapies will help your son to function more effectively in social and learning situations. I hope his struggle eases soon! Hugs, Shell.

    • Lisa said it WAY better than I could have. I was about to say that getting the help is the best way to address it, the actual diagnosis can mean diddly! Just find someone to work with him and you as a family about the behaviors and the symptoms that you see. A good therapist/social worker/counselor/doctor/etc. will not care about the Dx. They’ll just want to help and work together to do so! Good luck, mama. Stay strong! And hugs to you all!

  6. Shell… I’ve been praying for you. And for your family. And … I’m sorry. I could tell you that – on the plus, you will all be able to get more services to help. And that labels don’t define people. – But you already know all of that. You were a teacher and you’ve worked the system. I imagine it makes you more anxious than others because you know what might lie ahead. Bear is blessed to have you as parents. I will still keep you guys in my thoughts and heart as you move forward now. xo Kristen

  7. I worked with kids that had PDD. You’re right. It’s a very confusing diagnosis and explanation. But, you should now have a plan in place to help your son academically and socially. I hope this is a right step in the direction for you guys!

  8. I’m glad you got a diagnosis and as an educator who is somewhat versed in some of that, I have never heard of it so now you got me intrigued to research it. I hope this is a right step in the right direction for your family.

  9. As a social worker, I am somewhat familiar with this diagnosis – although it is an uncertain vague diagnosis (which therefore is frustrating). It’s not specific. It’s more like a catch-all to group kids whose behavior and development doesn’t coincide with the norm and doesn’t fit with other diagnoses/disorders. Good luck. Hopefully you can receive quality services/therapies that will help him to function as highly as possible.

    • It’s like they don’t know what else to do with these kids, but they know SOMETHING is going on, so they go with this. It’s frustrating.

  11. Shelly, such a heart-rending story about Bear.

    Our family went thru lots of tough stuff helping our daughter–all thru elementary and high school. So many questions, such a long road to travel for answers, answers that made no sense, answers that didn’t help…. What did help, every single time, was one-on-one hard work, dedicated focus on her and her immediate problem-of-the-day, and never-ending love, believing she could learn and could succeed. That daughter went on to earn TWO university degrees.

    She continues today to face life in her own way (the not at all easy or straight-forward way), but she is a hard worker, a beautiful success story in her own right. She is now married, a mother (and expecting again soon) and a professional landscape artist, selling her work internationally. She is many peoples’ BFF and an asset to her community.

    Bear will be/is one of those who face life from a disadvantaged start. Your job will be/is to teach him how to learn, how to live and how to succeed. Titles, names, diagnosis really don’t even come into it in the long run, except to qualify for available funding. The path to life-long challenge will NEVER be easy, but extremely rewarding in the end for both you as parent and for Bear. It will be a life struggle for your whole family. I spent/spend as much time advocating for my daughter within the family as I ever have outside the family, even NOW that all the kids are adults with families of their own.

    It has been our experience that adversity can make you stronger. Keep your faith in God’s provision of life and love, in your love for your son and in your son’s ability to grow and learn. You will make it. We are all rooting for you.

    BTW…have you heard of chelation therapy?

    Blessings, Rosemary

    • Thank you so much for your kind words of support!

      We have heard of chelation therapy, but it wasn’t something that they said we should do with our son.

  13. I really don’t know what PDD-NOS is either. I’m sorry that it’s leading to more questions for you, but I do hope that it can lead to more intervention to help your boy.

  14. I’ve not had to deal with anything like this–the closest thing being emotional trauma brought on by my divorce, which still rears its head sometimes. But the girls are definitely in recovery mode. Take care of yourself as you continue to discover what is going on. And do not stop asking questions, ever.
    You are strong and brave–it shows in your writing, even in your exhaustion. Remember you have support here. Keep reaching out.
    Kimberly

  15. Having worked in the “special education” world for a number of years, I have found that a diagnosis of PDD-NOS is truly like no other. Unique to each kid, the protocol and support therapies are out there. Now, its time to figure out what best helps Bear, be it music, art, occupational therapy or the like.
    I know a lot of the parents I worked with found solace in support groups. If nothing else, to have someone who truly ‘got’ the everyday.
    Your guy is adorable Shell, and the world’s his oyster!

    • I saw a sign for a support group today at one of his therapy appointments. I think I’m going to look into it.

  16. I’m glad that you’re getting some answers but sorry that it’s only leading to even more questions. Hopefully, you’ll get what you need soon.

  19. Oh Shell, I am so sorry that after all this, you might just be right back where you started..and trying to answer more questions as you try to help Bear. I honestly can’t imagine what it’s like..how it must keep you up at night or cloud your thoughts each and every day (that is why I stand in awe of you, because you keep going, keep doing, keep believing and it’s inspiring to me)

    It sounds like this diagnosis is a catch all…and like my Fibromyalgia, sometimes my body acts differently than someone else’s…my disease doesn’t always act like Firbro and then sometimes it does…it’s frustrating and confusing and it makes it really hard to explain to people..I have good days and bad days..even if I look ok today. I understand some of that catch all diagnosis more than I’d like to…

    if there is anything I can do for you, please let me know.
    love you girl. xo

    • It’s hard when it’s one of those, isn’t it? It’s like they don’t know what else to do, so they lump into a category.

      This is why I’m a mess and horribly behind on things lately.

  20. The DSM-V (the DSM is the bible by which these conditions are named) is likely to lump together conditions like PDD-NOS and Asperger’s into the bucket with High Functioning Autism (HFA) or Autism Spectrum Disorder (ASD) sometime either this year or next. I think largely this is for insurance reasons. (And no, you shouldn’t have to get re-diagnosed at that time. The verbiage will just change).

    Having that diagnosis is a huge step forward, because it can allow you to proceed with the right therapies to help your son. No kid needs the same treatment as another, and the tests that helped the docs determine this admittedly vague diagnosis will also help them guide you towards the right therapists. (Occupational therapy can do astounding things for the sensory processing disorders.)

    I can’t imagine what it must be like to live with lead poisoning. To not know, from day to day, how your son is healing. Luck and love. Here is a support hug.

    • Thanks for the hug. 🙂

      He’s already in OT for sensory issues and it does help. We’re just hoping for more help.

  21. The PDD label sounds even more frustrating than the Asperger’s label because of the range and scope of the diagnosis. I’m glad you have a starting point from which to seek services; that’s something for sure and worth the effort of testing/diagnosing, but I know it is not the complete answer to the complex question of how best to help your son. You fiercely love your son, and I know you want to do everything you can to help him. I wish you the best as you continue with the ongoing process of figuring out what that means over time. Hugs to you.

    • Thank you. It’s hard knowing that we still have far to go in determining what will help him.

  22. Oh Shell…my heart just ached reading this. I’ve been where you are and while I’ve made peace with my son’s diagnosis and have learned to look beyond it – it still hurts whenever a parent hears those words for the first time.

    But now you know. And once you know, you can get the support that your son needs. And the support that you and your family needs.

    When my son was first diagnosed, I ran right over to the local B&N and bought 5 books. Some helped, some didn’t. And it’s too easy to become confused, conflicted, overwhelmed and exhausted – emotionally and physically.

    Take it one day at a time. And if that’s too much – take it 10 minutes at a time.

    If you ever want to talk or vent – please feel free to email me.

    {HUGS}

    • Thank you- I will probably take you up on it.

      I haven’t gotten any books yet, but I was reading some blogs… and those were conflicting with each other. SIGH.

  23. Oh Shell, I’m so sorry that the diagnosis didn’t provide any more answers and is leading to more questions. I hope, though, that the label (as frustrating as its vagueness may be) will help you to gain more access to therapies that you can begin to try to figure out what works best for Bear and for your family.

    You are truly a Mama Bear for him, and I know that you will get him all the help he needs. But it is exhausting to be the fighter, too, so hugs to you.

    • I hope so, too. We aren’t even sure what sort of additional help this will give him.

      It is exhausting to be the fighter. I’ll do everything I can for my children, but OMG, I’m exhausted right now.

  24. glad that you are starting to get answers. Just a word of advice though, stay away from Google. When Bailey was diagnosed with Nephrotic Syndrome I dove into the internet looking for answers and all that did was scare the living crap out of me. I now will only look at the national kidney foundation website and what his doctors have to say.

    I wish you and your family the best ((hugs))

  25. I can’t imagine how you must feel. Just when you think a diagnosis will some how give you answers, you’re back at asking questions all over again. You’re a strong, dedicated mother and I know you will make it through this.
    I know from my own dealings with my daughter that having a definitive diagnosis doesn’t answer all my questions. Each child is different, even with their conditions.
    Looking at the brighter side, with a named disorder, it may open new doors for Bear. I’m always praying for you,Bear, and your family. xoxo

  26. Wow Shell. I cannot fathom getting a diagnosis which only leads to more questions. I pray for wisdom and knowledge to fill your family. Patience…. I’m personally learning that in order for us to OVERCOME (which is our theme for 2012) we first must be patient. Sorry, no recipe on how to do that. May today bring you peace.

  28. Shell, I’m so sorry, this must be so tough on everyone – you, your husband, Bear, his brothers. I hope that with this diagnosis, it will lead to some answers, some solutions, some action plan that will help Bear. Thoughts are with you.

  30. I’m sorry. It’s nice to have answers, but it’s such an emotional roller coaster when you’re not sure if you agree with the diagnosis. I understand how frustrating that is. At least you have something to research and look for, but don’t give up looking for answers on your own too. If I’ve learned anything on our journey with my son, it’s that we simply cannot rely on our doctors and specialists for ALL the answers. WE are their mothers and have to go with our instincts too. I know you know that. It’s just meant as encouragement. Don’t feel guilty if you don’t necessarily agree with this label. I struggled with that. I felt bad that I was angry we didn’t have answers, then you finally get something, but it’s a like a “dud” firework in your heart. All the anticipation and energy that went into getting that answer, and yet, you’re still not satisfied. I know that feeling. If you don’t have a peace about the answers you’re given-keep seeking. You’re right though, it is exhausting!

  31. I know this must be tough for you…b/c obviously as a mom you just want to fix the situation but you can’t. I’m keeping you guys in my thoughts!

  33. I know this is frustrating for you, but in actuality this label is a good thing pertaining to the public school system. He will now qualify for special ed and all the reasons you wanted to pull him out and put him in a new school…well the school system just has to suck it up and deal with it. They HAVE to help him now, it is required by law. And remember, your little boy is the exact same kiddo he was before the label that he is now after the label. ((Hugs))

    • I’m hoping so. That’s what we’re trying to find out. It seems that sometimes this is enough for an IEP and sometimes it is not.

  34. I’m so sorry you have only just begun. It’s got to be so hard to not know. I know you’ve got to feel like the hill in front of you is going to be such an exhausting climb. I wish your family the best, Shell.

  35. I can not imagine how frustrating it must be. But as the above posters said, at least he will now get the help he needs, and he won’t be feeling so anxious and nervous all the time, hopefully. You are such a terrific mama and he knows you are always in his corner.

  39. It’s a journey – a faith journey – a one-step-at-a-time journey where the only thing you can do is the best with the information you have rightnow – and have faith other information will come at the right time – You are a vigilant mom, a grizzly mama – and we fight for our kids, have faith for them – but it is a long journey:) Praying for you!

  40. That sucky suck sucks. I’m sorry. And if there’s anything you need, don’t hesitate to ask. (My specialties include weird Paint creations and happy thoughts, though I do take requests.)

  41. that feeling of going so far to just reach the starting line is exactly how I feel about our own journey with my genetic testing/infertility crap. I realize these are two totally different things, but the feeling is the same, and I understand how frustrating it is. *hugs*

    I wish there was an easy answer for you and bear. Hopefully the next steps bring you closer to that answer.

    • I’m sorry you are feeling that way. I wish there was an easy and magic and fast solution for all of us.

  42. Ugh. I’m so sorry you haven’t come any further. I can’t imagine how that must feel.

    I know that every time we *thought* we were making progress in our living situation – having a nurse come in so Rob could go back to work, hiring assistants to get FIL out of bed and on a normal schedule, getting him into therapy, we were shot down by the insurance company for one reason or another. Every time we thought there was a light at the end of the tunnel, we were disappointed and thrown right back to square one. It’s so hard when you think you’ve found an answer, or that an answer is forthcoming, only to get nothing. ((HUGS)) to you.

  43. Although I have not had to go through what you have, I have dealt with the multiple diagnosis with Doug and the inability of them to ‘label’ him for one reason or another. Sending lots of hugs and prayers to ya’ll as you go through this..

  44. I’m sorry that you, and HE, have been through so much.

    I hope that having some sort of diagnosis, something to refer to, makes it easier for you to get him the help he needs. Hang in there!

    • I just want things to be easy for him. I’d take forever of hard stuff for me if it could make his life easier.

  45. If nothing else, this leads to him getting new therapies that can help him. Unfortunately you may never know the official “title”, but here’s to a new approach in helping Bear!

  46. Oh Shell. I wish a diagnosis brought more answers. It must be so frustrating. I hope with time you get the insight you need and that he gets the important treatments that will help you all on this journey. Thinking of you!

  47. My heart goes out to you. While it is FAR different, my son is ADHD/Asperger’s and knowing that gave us no answers, but it did give me the ability to seek support and a community. You guys are in my prayers!

  48. Shell, I can’t even imagine. I know sometimes it helps to get a diagnosis so you know what’s going on, sometimes it makes it more challenging. Hope you find some more answers!

  49. It kind of sounds like my husband, he has an official diagnosis of unknown excessive sleepiness, so has to take medication to help stay awake- so it’s being treated which helps, but never will really be cured with something like that.

    You just keep doing everything you can and being the awesome mom you are. You care and love and are speaking up so he will be okay.

  51. It sucks that the only thing ever certain is that it’s UN certain. 🙁
    I know that you love him more than life, and that in itself will go a long way.
    You know that God loves him even more than you do and only wants good for him.
    I pray that you find some peace and some help.

  52. You sound tired and frustrated 🙁
    and you sound like I would , “Do we agree with this label? We don’t know. Maybe. No. Yes. We don’t know.”
    I hope the new therapies will help more.

    • It’s hard to know if we should just accept it or push for more evaluation. It’s not that I fully disagree, but I’m not positive we fully agree, either.

  53. I’m so sorry that you are still dealing with this and that the diagnosis has not been helpful. Hoping for you that it is just the next step forward toward healing.

  55. I think sometimes a diagnosis is worse then not knowing. I know it was when we had my dad’s health issues. Now that I know what is wrong with him it leads me to Dr. Google who is not a great one to consult. I hope the answers and path get easier for you!

  57. Aw, Bear. 🙁 I’m so sorry, Shell. It has to be beyond frustrating to have already gone through so much to be back at a square one of sorts. My thoughts continue to be with you guys in your search to find answers and help for Bear.

  58. I think about the whole thing of seeking diagnosis, and all I think is yes we can get answers. But, I guess it goes without saying, then we have to start at the beginning of that answer. I’m not even sure I would call that diagnosis an answer, not a definitive answer.

    It sucks to know that your families’ journey is no where near an end. There will probably be many tough times ahead. It’s clear you have an online support team, I hope you continue to trust us enough to be hear to listen your concerns.

    ((((SHELL))))

  59. it’s all yay! we have a diagnosis…
    then, crap! so what now?
    I know, it blows, and I’m sorry…and I don’t think there’s ever an end…it’s a journey that’s ongoing, and sometimes it’s going smooth and sometimes the bumps in the road make you want to vomit…
    I’m so sorry babe…just keep breathing and drinking coffee cuz you’ve got to be alert now, and on it…
    So do they think this an effect of the LP? or he would have had this anyway?

    • Exactly. We’ve been waiting and then we find out and I said Oh, f&%$.

      They don’t know for sure. A lot of what he has are classic symptoms of lead poisoning. So, it’s hard to know if he would have had these anyway or if it’s just b/c of the lead. It’s a thought that haunts me. Every. Single. Day.

  60. While it’s great to get a diagnosis, it’s still a frustratingly vague one. Here’s to hoping you can get some guidance and direction to help your little man

  61. This reminds me of an episode of Golden Girls (stay with me, I’m going somewhere with this). Dorothy is having some massive issues, but isn’t really “sick.” She just doesn’t feel right . . . she goes to her doctor who, basically, says “you’re getting old, change your lifestyle.” But, like Nuking Futs mom, she trusted her gut and, finally found a second opinion.

    She had Chronic Fatigue Syndrome, and this was a time where nobody knew what the heck Chronic Fatigue Syndrome was. Dorothy had no idea, really, what it was, or how to treat it, or if her life would ever feel “normal,” but she had something to call it.

    And that gave her some hope.

    (the same can also be said of my mother & lupus, when I was in high school, but that’s a little too close to my heart to write about)

    You’re on the way toward something better . . . I feel it.

  63. It is so difficult when the answers you get only lead to more questions but you and your husband are doing the right thing, you are not waiting around and you are not giving up. I hope you get definitive answers soon.

  64. I’m glad that you are at least a tiny bit closer to a real diagnoses and answer. I can’t imagine how difficult it is not to have a definite “this is what’s wrong and here’s how we fix it.” Still praying for you guys!

  65. thinking of you as you research and digest the PDD NOS diagnosis. with my oldest having Aspergers, and before that being diagnosed with Sensory Processing Disorder (and three other related issues), I understand the frustration, the lack of answers, and that it can be difficult to translate to others. Sending strength and peace your way.

  66. i can’t imagine dealing with it all. but your little bear is such a cutie and blessed to have such amazing and supportive parents!

  67. I’m so sorry you don’t feel like you got the answers you needed. But I’m still glad you are on the path. You are helping him. Exhausting? Yes. Futile? NO WAY. Keep the faith, Shell. And thanks for sharing something so very personal today. You have courage. A lot of it.

  68. I’m sorry you didn’t get the answer you wanted to hear. We’ve been there/done that twice. We got Jon’s diagnosis this summer; he was almost 6! If you need help navigating I’m here living in autism land.

  71. Oh, Shell, hugs to all of you. I’m wondering if we are starting down the same path. I know how frustrating it is to feel like the road is even longer and that the time you’ve spent so far wasn’t even on the right road.

    • I’m sorry that you feel like you might be headed down this path. If you are, feel free to reach out- we can comiserate.

  73. My (not so) HO is this: doctors think they know everything. And when they don’t, they put us (or our children through tests) Test this and that. Example: Just had my vitamin D tested. It’s low. I have to now take Vitamin D supplements and go back to see if that fixed me. So even the doctor’s do not know. Example: My mom had a bone density test done. She is showing signs of osteoporosis. She has to go back to check regularly and was given ways to slow it. They don’t know. I have been fighting for my little middle for 12 years now. 12 long years. Insurance, doctors, and schools. It’s not an easy battle but I am fighting it because I know I can help her grow like everybody else. But they don’t live with her. I do. Tests can only show them a small picture. Keep journals(if you don’t already) make them hear you. And pray for the docs to be able to figure it out.

  75. I have no words other than I’m here for you if you need me, Shell.

    You & your family are always in my thoughts and prayers. . .

  77. We were given a similar sort of diagnosis with my son…communications disorder…that eventually led to the Autism label. It’s hard when they don’t really know so they just lump them into some non-specific category. I hope it is a step forward for you. Thinking of you…
    Sandy

    • That non-specific is hard to deal with. It seems like a fancy way of saying “we don’t know”

  82. Oh Shell,
    i am so sorry.
    I can’t even imagine how overwhelmed you are right now.
    Google can be even more so…so make sure that you take each article you find with a grain of salt.
    Sending lots of prayers and strength your way.
    xoxo

  84. Wow, Shell, I know you’ve got a lot on your plate. I know this is so hard on all of you and I really hope and pray for answers and that Bear will get the help he needs. Hang in there, friend.

    • Thank you, sweet friend. I just want to be able to do something to make things easier for Bear.

  86. Oh, Shell! I cannot imagine how you must be feeling. Hang in there. He is still the same sweet Bear you’ve always known, with or without the diagnosis. When you’re ready, grab the diagnosis by the reigns and do what you need to do for him and the rest of your family to have peace. As with any diagnosis, all children are different. The diagnosis will fit him differently than other children. So when you are ready…make peace, own it, and move forward to make this all for the greater good.

  87. I’ve heard that getting a diagnosis is the first step towards getting answers, help and services for a child, so I hope this holds true in your case.

  91. I’m so sorry Shell… I can’t even imagine how frustrating and exhausting that must be… I wish that you had been given more definite answers, with definite treatment plans… I’m sorry 🙁 sending lots of love and prayers your way as you proceed along the path of unknowns… *hugs*

  93. That really does pretty vague. It sounds like this whole thing has been vague. I’m so sorry. I know it would drive me nuts since I always want to know WHY, need to understand. Maybe think about the Serenity Prayer? (((hugs))) to you!

  94. This is the one label I’m not a fan of–it’s too wishy-washy. And as you’ve found out, there’s little agreement about what it means. In 2013, PDD-NOS is going to be eliminated and kids with it will be considered having Autism Spectrum Disorder. It’s not as confusing.

    The good news, is that in general, PDD-NOS is considered to be a mild form of autism. Mild cases can generally see huge improvements with behavior therapy, in my opinion.

    Congrats on going through this painful process. I hope you’ll see the improvements you’d like to see once the therapies start!

    • It seems way too vague. Like they aren’t sure but know something is going on, so here’s this label.

      That’s interesting to hear about the change. In my reading around about it, I found people very angry that it would be considered autism. It was interesting. And confusing.

      He’s been in OT for the past 6 months and they aren’t really changing that- we’ll see if there are other therapies we can get for him now.

  96. I am glad you have some kind of diagnosis now to work with. It is a long road and full of confusion and overwhelming loads of information. But you go one step at a time. You may want to check out my SIL’s blog as she deals with this particular diagnosis. Hopefully adding the link here won’t land me in the spam list theinvisibledisability.com

  97. It must be difficult accepting a diagnosis that just adds more questions to the pile?
    Looks to me like you have a pretty big support network out there…
    I’m new to this site, but will be back…

  98. Not Otherwise Specified. Ugh. Those are frustrating words that sound a lot like, we’re not really sure, so here’s a label for that. I’m so sorry you’ve had this awful battle in your beautiful boy’s life. But the fact that you’re still seeking answers and not giving up will mean the world to him in the end. Prayers and love to all of you.

  99. While I’m happy you at least have a diagnosis, I’m sorry that you’re still left completely perplexed as to a specific plan that will help. It must be very frustrating and I wish it could be easier.

    But you’re on the right road…just keep doing what you’re doing!

    • Thank you. It does finally seem like we’re headed down the right path- we just aren’t as far down it as I had hoped.

  101. I can see how that diagnosis didn’t do much except bring up a new set of questions. It even sounds vague and less helpful than it should be. I keep trying to imagine your post a year or so from now in which you tell us what a long, hard journey it has been but how much progress he has made. I know it will come. It’s just rotten being on this side of it.

  102. I’m so sorry, Shell. I can’t imagine how incredibly frustrating this all must be for you. I hope that you continue to find all the answers you are looking for and that this doesn’t open up a whole other Pandora’s Box for you. Lord knows you and the fam have already been through enough.

    You are all in my thoughts and prayers. XOXO

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