As parents, we have expectations for our children before they’re even conceived. We imagine what they’ll look like, act like, be passionate about. We joke about occupations they are and are not allowed to pursue and wonder who they may eventually marry. We don’t spend a lot of time imagining what life would be like if they have a disability, if perhaps they will always be dependent on us.
And now Mark and I grieve, because we can see that possibility.
On Monday, I took Menininho in for two evaluations. The first was to a developmental behavioral pediatrician (DBP), whom we’ll call Dr. Awesome. Seriously, if you live in the Bay and find yourself needing a DBP, send me an email and we’ll talk. The entire center was set up to put us at ease: purple walls, LOTS of toys, everything accessible to little people. Dr. Awesome spent an hour and a half with us, greeting us with “come, tear apart the room, M.!” He really listened to me and I could tell he’s one of those doctors that believes parents are the experts. In the end, he determined that while M. doesn’t have any cognitive delays, he does meet criteria for an autism spectrum disorder. However, it doesn’t necessarily mean that Menininho has autism. We can’t determine now whether he is showing as autistic just because he has so many communication delays, or whether he’s got so many delays because he is autistic. Make sense? Dr. Awesome said he’s optimistic that an aggressive therapy regime could show that the diagnosis is a false positive, but he also told me he didn’t want me to get my hopes up. He recommended an EEG to check for seizures, a full genetic workup ( full karyotype, Fragile X test, and FISH testing), speech therapy 2x a week and group behavioral therapy 3x a week.
After lunch we met with the county. I was SO FRUSTRATED. Long story short, I felt like they spent the whole 40 minutes trying to prove that I don’t know anything about my son. The psychologist actually told me to just take the 2 page report that Dr. Awesome had hand-written for me to bring and just “file it away somewhere” because it’s impossible for Menininho to have autism. Um, I know my stuff and I KNOW that’s not true. They’ve agreed to give him speech therapy but will only acknowledge that he has a speech problem, which all the other experts have said is the LEAST of Menininho’s delays. Our case manager couldn’t make our meeting. I can tell it’s going to be an uphill battle to get our son what he needs.
I’ve got so many emotions going through my body right now that my head feels as though it’s been stuffed clear through with cotton, such that another thought could never possibly fit inside of it. I consider myself a realistic optimist. I want to believe that my son just has a communication disorder and not autism. I want to believe that with therapy, he will improve and catch up to his peers eventually, and there is some evidence that certainly supports that. Still, I can’t shake some of his new behaviors, like insisting on walking around the table counterclockwise for long periods of time.
I’m frustrated and tired and overwhelmed. I have about 2 weeks to learn everything I can about CA special education law to make sure our rights are being upheld. I’m sleep-deprived. I want to know when I’ll be able to look at my son again and not just analyze each of his behaviors as being normal or abnormal. And you know what else? I’m angry! Like clockwork, every 6 months since moving to CA our family has had some major medical issue to contend with: Type 1 diabetes, then celiac, then this and the MTHFR. You know what comes 6 months from now? The baby. What will that bring?
While I realize that I’m in a unique position as someone with a background in child psychology, including autism spectrum disorders, and a lifetime of experience in patient advocacy, I don’t think that means much in the end. As Mark commented last night, “Starting out with the tools doesn’t really make the job a whole lot easier. If you don’t have the tools, you’ll just figure out how to get them.”
I’m hoping things settle down some after services actually start and we can have concrete ways to work towards and monitor improvement.
June 17, 2010 at 9:18 am
Oh Maya,
I don’t know what to say except that I understand what you mean about having expectations for your child before they are even born.
When Wyatt was diagnosed with the MFS I felt like my whole world turned upside down. Our little boy was not the strong boy with a life full of sports,adventure and every opertunity open to him that he seemed to be. He was much more fragile than we had ever imagined and had a life full of limitations,pain,surgeries,medications and standing out from his peers.
I have always felt horrible saying this, but it was almost like we grieved the life we thought he would have.
I’m so sorry you are going through this, and I know our boys will still live amazing lives and be amazing people. But I understand what you mean by a ” New kind of Normal”
This is a hard walk, but your little guy couldn’t ask for better parents to walk this road with him.
Take care of yourself.
(((Hug)))
Larie
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marfmom Reply:
June 17th, 2010 at 9:37 am
Oh, don’t ever feel horrible for grieving the life you thought/hoped he would have! How can we NOT? In fact, that’s something we talk to the Marf teens about a lot. I think most people, if not all of us, have to take time to grieve what might have been before we can move on to handling what IS. That’s what we’re doing now…feeling a little sad about what we expected our son’s toddler years would be like.
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June 17, 2010 at 9:44 am
How did you become so wise so young!
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June 17, 2010 at 9:49 am
Hugs! Liam has been diagnosed with mild/moderate autism so I know where you are coming from – it does sound like your dev. pedi is fabulous! I don’t know about Cali since we’re in SC, but I recommend checking out Autism Speaks (I follow them on facebook) for great articles on advocacy and legislation…
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June 17, 2010 at 9:54 am
Hang in there, guys! If anyone has the skills, strength, and faith to handle this, it is you. And let your caseworker know that missing meetings is unacceptable. I used to be a social worker, so I know that if she can’t be there, her supervisor needs to be.
And on a less serious note: I’ve said it before, but your family is totally up for an episode of greys or house!!
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June 17, 2010 at 10:02 am
Oh, Maya. I am so sorry. You know that Kari and I understand a bit about how this feels. Have both of you read “Welcome to Holland”? It completely puts it in perspective for me. I posted it as a blog post on my NMFconnect page when I first joined.
We have had very similar experiences with experts and the school district here. It’s great to have someone tell you your kid is “fine”, but when you know that’s not the case and they aren’t listening to you and won’t give your child what he needs, it feels like you want to scream. They make the final call, and it’s so hard to fight that red tape. We actually do private OT and PT for Aaron because we couldn’t get the school district to see his struggles, and in the end I didn’t want him in a place that clearly couldn’t help him. I know that’s easier said than done because it is costly — we have some insurance help, then we spread it out longer throughout the year (less meetings with therapists), we work on things at home (you will learn alot from these therapists!), then we set aside money that would normally go for recreational or vacation (a reason we can’t make the NMF conference this year) and pay out-of-pocket.
I will continue to pray for all of you! I’m sure you know how important early intervention is for these kind of issues — so thank God you are a wonderful mother and caught this early, and of course, you will fight hard to get him the services he needs!
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marfmom Reply:
June 17th, 2010 at 10:15 am
Thanks, guys.
Heather: I am a bit familiar with Autism Speaks; I’ll be sure to check them out on Facebook!
Abbey: I know! We have got the weirdest genes ever. That’s why the doctor ordered the karyotype run…he basically said in a nicer way that our genes are so messed up it’s better to just check everything so we know up front what is messed up with M., lol.
Jen: I do remember the poem! When you posted it on NMF Connect it was the first I’d heard of it, and I reread it last night. Because services are 100% dependent on evaluation scores here, I’m not sure I can get them to change enough from his evaluation to get M. eligible for the group behavioral therapy so we’re anticipating having to pay for that on our own. I think that our insurance will help though, since one doctor has given him an ASD diagnosis and they have some sort of autism clause. Getting our kids the healthcare they need shouldn’t have to be such a struggle.
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June 17, 2010 at 12:14 pm
Oh, Maya…I’m so sorry to hear what you and Mark are facing with M. Nothing feels more frightening than being told something might be wrong with your child. I vividly remember when we were going through the process of diagnosing Haley with MFS. Hearing the words, “You have cancer,” were nothing compared to “your daughter has some type of connective tissue disorder.” Maya, you are a strong, intelligent individual, daughter, wife and mom. Continue advocating for M no matter what is thrown your way. He is so lucky to have you for his mom! While things may seem unbearable right now, hang in there and be sure to take care of yourself. Know that there are a lot of us rooting for you and your family. Sending caring thoughts your way for strength, guidance and peace.
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June 17, 2010 at 2:14 pm
So, working with little kiddos on the autism spectrum (or with spectrum like delays) happens to be my specialty. I’d be happy to chat or recommend some of my favorite books on the subject if you are interested.
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June 17, 2010 at 2:32 pm
Maya (and Mark): Wow, you sure are getting your share of curve balls! Well, it’s been almost 3 years since my grandson (now almost 6) was diagnosed with Asperger’s which is on the spectrum for autism. While I first noticed several behaviors that were vastly different during his “babyhood to toddlerhood days” in comparison to his older brother’s development, we were thankful that he has been able to receive speech and behavorial (social skills) services at such a young age. Yes, it was a sometimes long and frustrating road for my daughter (luckily, she was a stay at home mom) and her husband , but their persistence in seeking out appropriate services, completing tons of paperwork, attending numerous appointments, making phone calls to everyone who would listen, etc. have made all the difference in his successful first year of school – Kindergarten. My hearts go out to you as parents of a child who may be autistic, but I can also tell you, he is one special little kid (and so is my grandson) in that your village will help him succeed in life. We are here for you all! If you want to know more about how my daughter pursued services (in Salinas first and then in Roseville/Sacramento area), I will be happy to share what I know. Autism Speaks is a great resource too! Hang in there -
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June 17, 2010 at 2:40 pm
Maya, I am thinking of you today as you deal with this new possibility. We’ve only exchanged a few messages about Marfan, but I feel like I know you so well from reading this blog, and I feel for you and your family.
I would definitely look to get involved with some local agencies–the Autism Society and The Arc are great places to start. Even if autism doesn’t turn out to be the final diagnosis, these places can be incredible avenues of support and advocacy. It’s fabulous to brush up on laws/legislation, and I’m sure you can find them online, but it would be great if you could get in touch with people who live them every day and can give you the “inside info” on how to get what’s best for your child.
I don’t have kids, so I can’t even imagine the emotions you are facing right now (especially while pregnant–wow!). I have worked a lot with children with autism though, and it is certainly a spectrum disorder. M could fall anywhere on that spectrum (or off of it entirely); only time will tell. And I know that regardless of that, you will love him so so much and be the best mom for him. Best wishes to you all.
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June 17, 2010 at 5:02 pm
Maya,
I’m sorry for all that you are going through right now and I can’t imagine the frustration that you feel. But I want to say that een though you don’t feel like it now your children are so, so lucky to have a mother who knows how to navigate the system and to fight for her children, whatever they need. You are an amazing mother! Good luck.
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June 18, 2010 at 10:27 am
Maya,
Your thougths and feelings mirror many of those that I had about Paige–early on they thought there was a possibility of autism with her as well (speech/language delays and some behavior) . I too often find myself wondering what life would be like without all the extra attention. Having an older child with no alphabet associated with her name, I sometimes feel very guilty about the balance of attention between the two. I don’t know if it helps, but it will all become “normal” soon. It will just be the things that your family does. M. is so lucky to have you and Mark as parents. It may not seem like having the tools before hand helps but it really does. If it weren’t for my background in Psych I would not have advocated as hard or as much for Paige and her delays and because we started early I really think it helped to get her to where she is now–she loves school and did so well in Kindergarden–something I never would have imagined 2 or even 3 years ago. It’s labor intensive now, but it will get easier!! My motivation, or mantra if you will, was that I could still see her potential, however changed it was from the beginning, and I wanted to make sure that I gave her all of the tools necessary to achieve (regardless of the definition of achievement.).
Keep writing and sharing–I admire your ability to put it all into words– you have built a wonderful network of support!! please remember that you are fabulous and a terrific mother!!!!
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June 19, 2010 at 12:50 am
That is really hard. Its hard enough to suspect something like that but then try and get help from people who won’t listen. Sending you and your family good vibes.
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June 19, 2010 at 5:20 pm
Maya, you really need an advocate. You are working so hard to protect and support your son. I wish I could point you to someone who knows the system and could help. Will the case mgr be more helpful to you as you progress through this? I’ve dealt with county people here in NY making me feel like the world’s worst mom … ugh!!
The doctor sounds wonderful. It’s frustrating when healthcare professionals contradict each other. We’ve had more than our share of that as well!
As Tom Petty says, the waiting is the hardest part. Whenever I have a new worry about one of my sons, that song goes through my head. You seem like the kind of person who can face anything once you know what it is. Unfortunately, some developmental things are not easily classified. One thing for sure – you are so on top of this so early. That counts for so much. Hope that your writing helps you clarify your thoughts and release emotions. Hugs to you!!
Shawn Carstens
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