Sometimes It’s Hard Being Right

So, here it is: Graham is in the Autism Spectrum, his official diagnosis is PDD-NOS (Pervasive Developmental Delay Not Otherwise Specified).

I wrote a little bit before about how I felt back in December when the pediatrician expressed some concern about Graham’s milestones and gave me an M-CHAT and some phone numbers to call. I was mostly unconcerned but that night when I sat down with the test it all came at me really fast.

The M-CHAT is a screening test for autism in young children. It has 23 questions. You’re supposed to talk to your doctor if you have 2 fails. Graham has (depending on how strict you are) between 10 and 15. I knew then, I knew it and I couldn’t be convinced otherwise.

I made phone calls, I set up appointments and then I waited. Every day that passed only made me more sure. Yesterday we finally got our diagnosis. It was hard, I knew it would be, but I think it was easier for me than for everyone else because I’ve known for a long time.

From what I’ve read of other people’s experiences it seems I’m a little unusual. People are so ready to insist their kid is fine, that it’s going to be okay, that they’re just a little behind. I’m not sure why I’m different. Perhaps it’s because I find myself so regularly frustrated with the Bug that I needed something to tell me it wasn’t that I’m a terrible parent. To be honest, I’ve been feeling like a pretty bad parent for a very long time. It’s hard to calm the Bug, it’s hard to direct him, it’s hard to play with him, it’s hard to bond with him. In a way, knowing he’s autistic provides me a little bit of comfort. It’s not my fault that it’s so hard, and it’s not his either, it’s something else entirely.

Yesterday, (Valentine’s Day) was our sit-down to get the results of Graham’s evaluation last week. Like our Early Intervention evaluation, it was mostly stuff I expected. (I was there for the testing, after all.) Gross motor is good, just a bit behind. Fine motor could use a little work. I was happiest to hear about his non-verbal cognition, which was basically on target. But the language… well, it was worse than expected. Expressive is at 3 months. Receptive is less than 2 months.

This is the thing that I think is hardest to explain to other people. Yes, toddlers are tough. In a lot of ways Graham is no different from the rest of them, especially the ones who don’t talk much. But it’s hard to express just how big the differences are with receptive language. Parents with normal kids have been interacting with them since they were newborns. They are so used to seeing their child smile at them, look at them, listen to them that I’m not sure they can process how different things can be for us. You can’t show your child how to play with a toy. You can’t show them something to look at. It’s so all-encompassing.

Many of Graham’s unusual behaviors have been around since birth. But his regression has become a lot more apparent to me now that we’ve been asked so many questions so many times. It happened around 8 or 9 months and it was relatively subtle. I completely understand how people can miss it, especially if you don’t want to see it. I think we’re really lucky that we’ve caught it and that we can move forward.

Feeling relatively calm about the appointment meant I was ready with questions to ask. (Okay, so I was feeling calm until I actually walked into the office. Then I was on the verge of tears from the moment I sat down in the waiting room.) What do we do now was the biggest one.

We go through Early Intervention. We give them the report. Our doctor recommended 20-30 hours a week of ABA (Applied Behavior Analysis) plus some speech therapy, a bit of fine motor assistance and a playgroup to help socialization.

There is no prognosis yet. The first 6 months are the most important thing.

Yesterday was a rough day. Today is a lot better. Today I feel like I can focus my energy a little bit. Still, there are lots of things I’m not ready for. I don’t think I’m ready for books. Thanks to a little help from Bird on the Street I am turning to blogs instead, for now. I get to see personal experiences, I get to see things up close and I get to meet some new people. I’ve gone through a whole bunch and I’ve added a new list of Autism blog links on the right sidebar.

This is by no means an exhaustive list. It is the blogs that connected with me now. For example, I am not yet ready for blogs about kids with severe autism or teenagers with autism. For now I am still holding out hope that Graham will be mildly autistic or high-functioning. I am not quite ready for blogs about whole sets of siblings with autism and other special needs. I’m already freaked out enough about the prospect of one kid with autism, I’m not ready for two.

I’m also not ready for people who are “at peace” with all of it. I’ve still got a decent amount of anger. And, I guess, there is a little bit of denial. It’s not about Graham, it’s about me. I know there’s no mistake with his diagnosis, but surely there’s a mistake that I am the parent of a special needs kid. I am not warm and fuzzy. I am not patient. I am not ready to say he’s perfect just the way he is. I will not be waving the Autism Awareness flag on the steps of Capitol Hill. I am all wrong for this.

I feel like Graham deserves someone who would put their whole life on hold right now to help him get better. I just can’t do that. I am drained from getting through the last several months. There is a lot of work coming up, and while I’m hopeful about it I’m also feeling preemptive exhaustion. For now I’m reminding myself that I’m working the way I’ve always worked: I need to be okay if I’m going to be a good parent. I am going to keep looking for a job. That’s what I need. And I have to trust that it will help me be better with Graham.

I’m working on the anger part. It’s very easy for me to slip into being angry at everyone who has ever raised a normal kid. Even people who have an autistic kid, but had that child 2nd or 3rd. I am working on it. It’s one of those things that’s an unavoidable reflex for now and one I’m sure will fade as I get used to it.

In the meantime, if you’re a parent with a young child and an autism diagnosis, I’d love to hear from you. I look forward to learning from the people whose blogs I’ve found, whose kids are dealing with preschool and kindergarten and elementary school. But I’d also like to find some other new-to-autism parents who are bumbling through this whole process, too. Feel free to comment. Or you can email me, my address is in the right sidebar.

And if you are an autism organization looking for a posterchild for early diagnosis, I think I have a face for you.

IMG 2053.v2 Sometimes Its Hard Being Right

I took this video a few days ago while The Bug was really into “Ma” as his syllable of the day. I know it’s just the same thing over and over, but how could you expect me, his Mama, to stop filming?

We still haven’t celebrated Valentine’s Day (which combines with our celebration of Eric’s birthday last week). Not sure when we will. Hopefully soon and hopefully it will be a better day than yesterday.

21 Responses to Sometimes It’s Hard Being Right

  1. I have been there, and I wish you luck and love and you will be fine! It’s hard to be right when you don’t want to be, when you wish with all your heart that you were wrong. My son is 5.5 and was diagnosed at about 25 and it’s been a LONG three years but we have more good days than bad. I do find myself mad a lot, but I try and temper the anger with the love that I feel for my son and our family and … just the Anthonyness of him. I love who he is, all of him, and I guess that means I have had to love the Autism too. We take one day, (hour, minute) at a time and we plug along. We have two typical girls too and that makes it easier, and harder. But Anthony was my first and I can’t change the first two years of his life, all that wondering and wondering and feeling like something was wrong. It’s not easy – you are a strong person. Anthony is in ABA therapy now and he goes five days a week, from 8:30 to 3:30, so if I was working while he was in school, he wouldn’t know it anyway! I think you should do whatever you can do to be the best and strongest person you can be, whatever that is. We’ve had slow, but steady progress with ABA therapy, as well as occupational therapy, as our son has some wicked sensory issues. If you want to email me, I’d be more than happy to chat. There are a lot of us out here, we can be stronger together than apart. Hang in there, mama.

  2. I think it’s fantastic that you have moved ahead in getting Bug diagnosed. My entire family is 90% sure that my youngest nephew is on the Autism spectrum, yet my BIL and SIL refuse to get him tested and get him help.

    I think, but being proactive (regardless of whether or not you want to be the poster parent for this) you’re helping him in the long run.

    While you may not be ready for books yet, I read The Horse Boy (http://www.horseboymovie.com/ ) last year and it was spectacular. There’s also a documentary about it. I realize its kind of wackadoo and you may want to wait a few weeks or months before looking into it, but is may be insightful.

    A good friend of mine works with autistic kids, if you want, I can solicit some advise and recommendations from her, but I don’t want to intrude and give you assvice :)

  3. You should be proud of how proactive you are being. I can only imagine how hard it is for you. Our two year old has a speech delay and is going through Early Intervention for speech therapy. That is a hard pill to swallow when you just want to think your child is 100% perfect.

    I have a niece who is on the autism spectrum and it is amazing how much progress she has made. At three she would not interact with anyone, cried, and had very few words. She just turned five and is speaking much better and more receptive to people outside her family.

    Again, you should be very proud of yourself. You are a great mom and you have a very cute little boy who is receive amazing care from you.

  4. Oh Jess. I thought about you guys all day yesterday. I’m sad that you had to be right. But I’m also so impressed with how you have been so willing to see the truth. I don’t know many people who would be. I love you, old friend. And Beckett is eating raisins right now (which he never does); it must be in tribute to Graham.

  5. I’m sorry about your son’s diagnosis, although you are doing everything possible and more at the moment to help him. My son has a learning disability, so my eyes/ears perked up when I saw posters that the authors of the following book were speaking recently on on the campus where I teach.

    I know you said you’re not ready for books yet, so perhaps store the title away for another time. This one is written by two sisters, one of whom has a daughter with Asperger’s and the other who has a child with bi-polar disorder. Anyhow, the title did speak to me: Shut Up About Your Perfect Kid: A Survival Guide for Ordinary Parents of Special Children written by Gina Gallagher and Patricia Konjoian

    You’re in my thoughts!

  6. Hi Jessica, I’m sorry you’ve had this happen in your little family. I can tell from reading your story that your tired and exhausted just thinking about “what next” and what that will be.
    I’m very grateful for modern medicine and all the advancements they are making and have made. When I had my first daughter, 33 yrs ago – a friend of mine had a autistic daughter about the same time. We went to the same church. Back in those days they said it was probably due to “relationship issues with the mom” – that kids turned out this way. My friend spent the next 20 years blaming herself – it must have been something she had done and couldn’t remember – but that’s what the doctors thought back then. And told the parents. They had no other explanations.

    So flash forward to today – there is so much more information and explanations. You don’t have to feel bad at all – it was NOTHING you did or didn’t do. It’s just the way it is.
    While my friend was getting the diagnosis of autism – my daughter was different – but had issues. I had her tested by the Univ of Texas – and they came up with severe ADHD. Went to a bunch of different doctors. By high school she had 5 different diagnosis and was always in the “special ed” dept because of behavior – not necessarily because of bad grades.
    It was a long road — it was hard – but you will make it. He will make it and be a happy, caring little boy who will grow up. You will be there with him and helping him.

    I always worked with the doctors and the schools and the teachers. We were a team – which mainly stayed on the same page. It was the best for her – she couldn’t manipulate the system that way. You will figure out who your team needs to be – and he will start growing.

    I’ll keep you in my prayers.
    barbara

  7. As a mom to a girl diagnosed with Acute Anxiety Disorder when she was 4 year old, I can SO understand your knowing and no one else not. YOU’RE his mom. YOU know him best.

    I can also tell you that it’s better to have a diagnosis than not have one at all. This way, you have a baseline for knowing what’s best for him.

    I wish you the best in learning how you can be the best mom to your son.

  8. A friend of mine has a son with the PDD-NOS dx as well. She’s had many of the same ups and downs you describe. Like you, she suspected it and was proactive. It’s been a few years since the dx and it is still sometimes hard for her to remember that he needs different things from her. If you’re interested, feel free to email me and I’ll send you her blog URL. (Where she talks about many things, not just her son – he is still just one part of her life. The dx has not meant that he has overrun everything.)

    And, you’re so right to be so proactive and on this so early. EI can make a tremendous difference. Hang in there.

  9. I’m so sorry about your diagnosis, but glad for you that you now know and can go in the right direction with the right tools.

    I have a 3 month old that has puzzled me from the get go with his development and temperament. He is my 5th and there is certainly something different in many ways to my others. Like you, I hope I am wrong, but it was comforting to read how things have come about for you.

    Good luck on this journey. You are an amazing parent and Graham is lucky to have you as an advocate.

  10. Jessica,

    I’m so sorry. I don’t have any great words to give except that I’m sorry. {{HUGS}}

    Call me soon and we’ll chat about it. I have no advice, but I do have a good listening ear.

    I posted this post on my FB fan page, so hopefully someone with info/advice will reach out to you and give you some info.

    Graham is a sweet cutie patootie and he’s lucky to have a mom and dad who are so aggressive about him receiving the care and services he needs. He will thrive because you are so proactive with him.

    Don’t beat yourself up. You are a great mom. You can do this.

  11. Hey, got your link from HoH and while I can’t understand what this process of diagnosis is like, I do know what it is like to live with someone on the Autism spectrum. My husband and I, in addition to our 12 month old, are full time caregivers to a 21 year old gentlemen with Fragile X, a common form of Autsim, who lives with us. Your little man is so handsome and I am sure the whole process as been a roller coaster of emotions but you will get through this. ((((((Hugs))))) Feel free to email with questions or just to vent honey!

  12. Oh Jess I am so sorry for how hard this must be. It really does all seem exhausting (in addition to rest of the spectrum of emotions) and I love you for being honest about how you feel. I don’t think you should have any expectations for how you should feel or the type of autism-Mom you should be. Don’t “should” all over yourself! I firmly believe that God wouldn’t have given you Graham if He didn’t know you would be a fantastic mom for him. Make sure you take care of yourself during these next few months. Graham is such a cutie and he’s so lucky to have you and no diagnosis will ever change that.

  13. Jessica:
    Please check out the blog written by my sister-in-law Jess. http://adiaryofamom.wordpress.com/ Her 6-year-old daughter is on the spectrum and she writes beautiful posts about their struggles and breakthroughs. She is very honest about her continuing anger about the situation, but also writes about how she works through it and how grateful she is for all the amazing people that help her girl. She also has a 9-year-old daughter who is just amazing in dealing with her sister’s situation too. Jess, my brother, and the girls live in the Boston area also and they are very involved in autism organizations as well. Jess has built an amazing community around her blog, and I am sure that they will welcome you with open arms and amazing support.

  14. I also got my son’s official autism diagnosis yesterday. It’s been a long time coming (he’s 3yrs 4months now), and we’ve been on the journey of the diagnosis process since the summer. I think I came to terms with it then, as that’s when lots of help and support came into play. He’s been in nursery in the mornings now since the beginning of January, and it’s difficult for them, but he’s slowly learning the routine, which makes him much happier.
    I’ve turned the corner from quietly hoping that I’d got it wrong and he didn’t have autism, I grieved for the life I’d hoped for him, but now am in a much better place.
    He’s still your beautiful little boy – that hasn’t changed, and it will never change. He’s just doing things in his own time, instead of to the “normal” timetable we have for kids.
    I write about living with autism in the family quite a bit on my blog, so feel free to have a nosey. Another wonderful woman who blogs about autism with her lil boy (around the same age as my Max) is Jen from http://thekingandeye.com – I commented on one of her posts back in april last year and she reached out to me, knowing how hard it can be. The online community of parents with autism is a loving and caring one, full of people who are in the “club” and understand how difficult it can be, and how rewarding too.
    *hugs*
    Marylin x

  15. I do not have a child with Autism, but my Husband works in the field. Right now he is working with a program that in his opinion is one of the better ones. I don’t know the cost, but I do know it requires some time. It is called the son rise program. Here is the Website:

    http://www.autismtreatmentcenter.org/

    My Husband uses this program with a boy right now and has seen some real improvement in connecting with him. The boy’s mother is usually very willing to talk about the program and her son with others if you are interested, please email me and I can get you in touch.

    cynspiration (at) gmail

  16. Hi there. I think I might be the friend Ender is referring to, though it was actually my friend Marlene who wrote and suggested I might read this and get in touch (small virtual world we live in, apparently).

    My son, Elliot, was diagnosed PDD-NOS when he was 4, though we started piecing things together when he was 3 1/2. He’s always been extremely verbal (Asperger’s in that sense) but struggles with language, social difficulties, fine and gross motor challenges. Mostly, though, his challenges these days (he’s 6 1/2) are social I’ve written a lot about my journey both on my blog and elsewhere, thought and worried a lot, been angry for awhile (and still am some days), felt like a really crappy parent but was relieved to find out it wasn’t simply a matter of me being a terrible parent (though some days I could really do better!), and read way more about this spectrum business than I probably needed to. But the early days–boy, are those ever rough! But it gets better…and then there are new challenges…and then you figure things out and then there are even more challenges.

    Anyway, while I haven’t kept up with my blog in a LONG time, I did during the time of Elliot’s diagnosis. So if you want to hear bits of my story, check out December 23, 2007 onward (and for what life was like before I had a clue, go back before Dec. 2007). And should you feel at any point it would be helpful to contact me personally, I’m open to that too. I’m just another mom on a journey with my kid on the spectrum, but I find sharing stories and struggles with other parents has helped me more than anything else.

    Oh, and two best books that helped me very early on: Ellen Notbohm’s Ten Things Every Child With Autism Wishes You Knew and Kranowitz’s Out-of-Sync Child

  17. I just came across your post via Twitter with an #autism tag. I wanted to reach out and share that my son (2.5) received the same diagnosis the day before Thanksgiving last year (2010). We had concerns about his language and then the more questions we asked, raised more questions until we started down the proverbial “rabbit hole”. I don’t know anyone else with a child on the Spectrum and am looking for any support, info, ideas, etc., I can find online. It has been an interesting, challenging, frustrating (insurance, bureaucracy, etc.,) and an emotional rollercoaster, but a beautiful journey nonetheless. It is teaching us so much about ourselves too. We’ve had some high-highs and some low-lows, but it is all really starting to make sense. I’d love to connect and walk this journey with another mom ‘figuring it out’ as we go. :) I’m relatively new to blogging consistently, now that we’re getting some “consistency” to our life, but have blogged a bit about it. More to come – I’m finding it quite therapeutic! Be well Momma!

  18. Just saw that you had received your diagnosis and wanted to send some love your way. My son may or may not be on the spectrum, but we’ve been dealing with a variety of issues with him since he was born. I completely get the anger part. I get most angry when people take “normalcy” (in pregnancy, birth, children, etc) for granted. I know it’s irrational – why should people worry about something they don’t need to deal with? – but it still makes me angry. Anyway, you’re not the only blogger in the Boston area with a diagnosis, so please do reach out to our community if you need some local support!

Leave a reply

CommentLuv badge