(Warning: another long post ahead. Go get a snack and get comfy. I’ll wait. OK, ready?)
I feel like I’ve been through a boxing match, physically and emotionally. Remember how I said I wanted Cordy to show her true colors at the evaluation today? She certainly did.
It started out as a really good morning. Cordy was in a great mood, happy to get into the car, etc. She kept talking about going to school, but I reminded her that we were going somewhere different – not to school. That still didn’t help when we arrived. Getting her out of the car, she immediately threw herself down on the pavement and refused to budge. That’s when the Mother of All Tantrums erupted.
I carried Mira in her car seat with one hand, and scooped up the screaming toddler with my other arm. I made it halfway down the sidewalk before Cordy’s kicking and thrashing caused me to set her down. At that point she tried to crack her head on the concrete, but I stopped her, causing her instead to push on the car seat in an attempt to knock Mira over. At that point a woman approached, introduced herself as someone who works with the evaluation team, and offered to carry Mira in so I could carry Cordy. Yay for nice people.
Getting Cordy into the building, up to the second floor, and into the room was a fight. She tried everything she could to get away – scratching at my face, grabbing my neck, kicking. Once we got into the room, the evaluators helped to keep her in the room. They tried everything they could think of to distract her and draw her out of her meltdown, but nothing worked. She crawled to and banged on the door, screaming that she wanted to go back to the car. Then she’d come back to me and try to hurt herself. I’d restrain her, and she’d get an arm free and push it hard into my neck. (This going for the throat tactic is a new one.) The screaming and shrieking continued for about 20 minutes, then she calmed down a little.
I was presented with several forms, which I began filling out while Cordy took in her situation. The room was full of toys of all types. She eventually picked up a ball and threw it around. The evaluators then whipped out their checklists and started asking her questions and presenting her with pictures, asking her to name what she saw. She did name all of the colors on one page, but when asked to name pictures on the next page, pushed it aside and went looking for another toy. She clearly didn’t feel like playing their games.
While she played and continued to ignore her evaluators, I answered question after question from a speech pathologist, a school psychologist, a special education teacher, and a school nurse. The nurse, who seemed a little intimidated by Cordy after seeing Cordy’s initial meltdown, decided she didn’t want to try hearing and vision tests. Instead, I was given a medical form to be filled out by her pediatrician. She also recommended a dental exam. Actually, she started to say it would be necessary, then considered Cordy’s behavior for a moment and amended her statement: “Well, I recommend a dental exam, but if you brush her teeth well each day, it may not be worth the stress to you and her.”
Cordy did eventually calm down and acclimate to the room – an hour and a half after we got there. She moved from toy to toy comfortably, counting the play food, pointing out the shapes, and playing with the magnetic numbers. But she still wouldn’t do anything the evaluators asked. The special ed teacher decided to push Cordy by not letting up, and even taking away the toy she was playing with to make her focus on pointing to a picture of a sleeping child. Cordy ignored her and reached for the pop-up animal toy, and when the teacher moved it completely out of her reach, she took one look at the book the teacher held, got out of her chair and found a new toy to entertain herself with.
Meanwhile, I made an effort to stay out of the way and not interfere, focusing on the forms and tests I had to take. Reacts negatively in a new situation? Absolutely. Likes to play with food? Not at all – hates to touch anything gooey. Plays with other kids? Not so much. Defiant? Wait – are you serious? What kid isn’t?
Mira was blessedly quiet and happy nearly the entire time. The only time she cried was when a little boy lost his balance and fell into the car seat, sitting on her head while she was asleep. (I acted quickly and caught most of his weight.) In that case, I think I’d cry too.
It was interesting to see the mix of other kids in the room, too. Each had a parent nervously watching nearby, and each child had his or her own mix of quirks that brought them there today. Several of the children seemed perfectly “normal” to me, but I reminded myself I’m not a professional, and I don’t see these kids every day. Those parents who came in after the meltdown might have thought the same thing about Cordy.
After two and a half hours, the professionals sat down with me to go over the results of the day. Based on her behavior and my interview, she immediately qualified for the special ed preschool. They qualified her based on communication, social-emotional, and adaptive behavior delays. I was surprised about the communication delays, but the speech pathologist said that while Cordy has an enormous vocabulary, she’s still not putting it to proper use, choosing to fall back on scripts (reciting things she’s heard) instead of forming full sentences on her own. She also won’t use the language she knows when she’s frustrated or scared, choosing to act out instead.
They again told me she’s very bright, her cognitive skills are sharp, and she might even be gifted. But she only made the shortest amount of eye contact possible with each of them (she has extended eye contact with family, however), and didn’t even notice other kids in the room who were also there for evaluations. She also refused to follow anyone’s agenda but her own.
And then the school psychologist told me she was also adding to the qualification an educational diagnosis of autism. I felt the tears building in my eyes when she said that. I knew it was a possibility, but hearing it still surprised me somehow. Autism.
Seeing my reaction, the psychologist quickly added that Cordy is very high functioning, but based on the tests, observation, and interview, she fits the profile for autism. I asked her what type, and she said they didn’t differentiate for an educational diagnosis – a medical diagnosis would determine that, but it was most likely PDD-NOS. Getting a medical diagnosis was optional, but if I wanted it I should call Children’s Hospital for an appointment soon – the wait time is 6-12 months!
So there it is. They will put together an IEP based on her MFE (alphabet soup, anyone?), and they hope to start her in one of the special ed preschools by the end of this month. They also told me about additional services that I’m entitled to outside of the school district (private therapists, etc.), and how to go about getting funding to pay for those, but by that point my brain had reached maximum capacity from this information overload and I didn’t understand a thing they told me. I have the paperwork (oh, the paperwork!!), so I can look back on it later.
I’m exhausted. My entire body aches from the wrestling match I endured when we first got there, and my mind aches from the emotional trauma. It hurt me so much to see her in that gigantic meltdown. Her screams to be let out of the room still echo in my head. Even after she calmed down, I watched with heartache as the evaluators checked boxes on their little clipboards and nodded to each other in agreement, knowing that they saw aspects of her behavior that were outside of the norm. And I’m still processing the diagnosis of autism.
But I’m also happy for the events of today. She will be switching schools soon, but this new school will help her so much. Cordy will learn to be more comfortable with herself and her world, and they promised me she will blossom in this environment. It’ll be tough at first, but we’ll look back on this and know it was worth it.
My favorite part of the day? Getting to fill out the section on the questionnaire that asked What are your child’s strengths? The writer in me answered: Cordelia is a wonderfully smart little girl who sees so much beauty in what many consider mundane. Through her eyes, the world is a complex series of patterns: shapes are the building blocks of everything, numbers are the supports, and colors the decoration. She has an excellent memory and loves to learn new things. She is a deep well of emotion, the depths of which contain a lot of anger and fear, but just as much or more love and compassion as well. In her own environment, she is sweet and gentle, never malicious or spiteful. She gives big hugs.
It felt good to remind them, and myself, just how amazing she is.
I wish there were a way to send a more PHYSICAL hug through the ether right now, Christina. Feel good about this – you are getting access to what sounds like an amazing program for Cordy, you are getting such early intervention here. This is a good, good day in her life today – and I say that even though I’m crying as I type it.
And it’s true about those strengths – that ability to see patterns that the rest of us overlook, to make us see the beautiful things that we would pass by without noticing. There are compensations.
I want to give you a hug.
hugs Christina. It’s such a good thing she’s being diagnosed so early and can get into a good program. And you’re right to focus on the positive–sounds like there’s so much positive to focus on too.
wow – I haven’t been here in a while and this is the post I come back too. J was evaluated through Early Intervention and she qualified for OT and was getting feeding therapy as well. Autism was always in the back of my mind. She always had little quirks that fit right into the spectrum, but she was never labeled. I’m sorry to hear about your struggles, but I’m so happy to hear that you’re trying to look on the bright side.
Christina, YOU are amazing too–that last paragraph was so wise and touching. What an ordeal! I’m so glad that Cordy will be getting these great new services. Lots of luck to you all as you navigate this new world.
I’ve been lurking, but I just wanted to offer hugs and support. What a hard day for all three of you.
You really amaze me sometimes. You’re so strong and write so calmly about what was obviously a supremely difficult day. Cordy is lucky to have you in her corner, battling away for her.
That last paragraph was wonderful.
I’m so relieved that you got some answers even though I know how tough they are to swallow. I’m here to lend you support and I know that Cordy will blossom in her new environment at the new preschool. I’m sending good ju-ju your way!
Oh sweety, I know how overwhelming all of this is. And even after all of that you sound ok! What a strong woman you are.
I remember when we went through all of these with Noah. I was so intimidated by all the paper work. I’m glad I waded through it though, because we were able to get Noah some great help.
I definitely recommend doing what you need to to get that appointment at Childrens hospital. Ask if you can be put on a cancellation list to try and get in earlier. We found we needed those “official” diagnoses to help us get some of the services we needed.
What an exhausting day! I know you don’t know me but I’d give you a hug if I could. Cordy will do great things in the new preschool. It’s great that she’ll get to start that so soon. Good luck with everything and thank you for sharing with the world. I’m positive you are helping lots of strangers with your updates.
So wonderful that Cordy (and you!) will be getting the support you need. I’m sure the transition will be tough… but in the end… like they said… it will be worth it. Good luck!
I’m exhausted just reading. I wish I were closer, you deserve a hug. I’m sorry to hear it was a difficult day. I’m surprised they went with a diagnosis of autism without a medical diagnosis. I can only imagine how hard those words were to hear.
I hope the spec ed preschool will help her. Actually, I KNOW the preschool will help her. Reading this made me want to go back to work. Kids like Cordy were my favorite.
By the way, if you have any speech/language questions, feel free to ask me.
Girl ((Hugs)) and (Hugs) I know this was hard on you and it will continue to be hard, but with all the help and information you can now gather it may get easier! – It will get easier! We are here for you in the mean time!
Knowing is always better than not knowing. They know so much more about how to treat autism now. One day it will just be a story about what she was like when she was little. Not something that defines who she is like it used to be.
It sounds like such a tough day, for all of you (even poor Mira, being sat on! Terrible way to wake up!) – but also like a very important day. I hope the new school is wonderful and helpful and the transition goes as smoothly as it can.
When I read about the woman offering to carry Mira for you so you could carry Cordy, I thought back to the earlier post about the moms at the school just watching you struggle. Nice to be somewhere where the people understand what you need, instead where people jump to conclusions or scowl at you. I’m glad you had that experience, even at the cost of the tantrum.
Wow. Just wow.
Huge hugs for you Christina. It’s so hard to hear out loud what we fear might be true in our heart of hearts, but you weathered it and survived. And your daughter will be better for it.
It sounds like this was the toughest day on your journey. Hope the rest are a little easier.
Such a beautiful description.
You’re such a loving mother. I’m exciting to hear about the journey.
The last paragraph made me cry. YOU are just as amazing as Cordy. You will figure things out as you go. I can’t say it won’t be hard but you will make it through.
Thinking of you….
Christina…I’m so very sorry that you and Cordy (Mira too) had such a trying day. I’m happy for you both though that you are getting early intervention and some real direction on how to help Cordy most.
I’ve been reading your blog for awhile now and I have to tell you I am amazed over and over by what an intuitive, strong, loving mother you are. Cordy is very lucky to have you in her corner…just as you are very lucky to have her in your life.
Hang in there…so many people are pulling for you and your sweet little girl.
{{{hugs}}}
I know how hard the autism diagnosis must have been… No matter how helpful it will be to her for special help, it’s hard to hear someone “diagnose” your child. It’s awesome, though, that she is getting so much help at such an early age. This can only help Cordy and your family.
Crossing all my fingers and toes that she adapts well, and that today is a good day for her, so that you may relax a tiny bit. (I know what it means to hope for a good DAY. Justin’s been maturing recently and we’re having more good days than bad. Cordy will mature, too. Just wait and see.)
Oh, Christina, that last paragraph is wonderful. Cordy needs you — you’re the perfect parent for her. That’s just great. I’m so sorry that you had such a rough day, but I am also glad that it went as you “hoped” it would — that Cordy was herself.
I’m glad Mira was such a good baby while you were there.
And indeed, yay for nice people.
Please let me know if there’s ever any way I can help out. If you ever need someone to watch Mira or anything, or if you want to get together or whatever.
I admire your strength.
Christina-
I read often but mostly lurk. I had to write and say that you are being such a good mother to Cordy by being her advocate. It is beautiful how you are still able to focus on the positive after a trying day.
Good luck and keep posting; I ma certain your journey will help others. God Bless you and your family!
Ditto to what everyone before me has said. I loved the last paragraph, it did make me cry.
Your day sounded super stressful. I can’t even imagine. I’ve gone through just a small portion of what you did and ended up crying, questioning myself and feeling hopeless.
I will say again that I admire the work you’ve put into this thus far. I know so many parents who wouldn’t have thought twice about issues like these, leaving their child to suffer. Cordy is so lucky and so blessed to have you as a Mom.
I hope this next step will be a blessing for YOU as well.
Your story really touched me. Especially the very last. Thank you for sharing.
Your last paragraph was beautiful.
Thank you so much for sharing this. You have no idea the support you provide to us other moms out there going though the same thing. You are a wonderful mom and the love you have is obvious.
I loved the last paragraph. Sometimes when our children are out of the “norm” we forget and others forget that they too have strenghts. Focus on that. Draw strength from that. It is so easy to be overwhelmed with the struggles.
The speical preschool will help. My little guy just started this week.
Thank you again.
What a beautiful description. You are a true adovcate for yuor child. Hang in there!!
Hi —
I’ve posted only once before. Our daughter will be 13 next month, high functioning autism (PPD-NOS).
I’d love to talk if you feel it would help — also, I’m a good listener if YOU just want to talk. I’ve been there.
I know it’s hard, but
I think you’re doing wonderfully. Hang in there!!
Michelle
[email protected]
It sounds overwhelming, I think you need a hug. Loved what you wrote about Cordy’s strengths…
That’s wonderful that Cordy will be in an environment that will help nurture her strengths. What a lovely description, an amazing little girl and amazing mother, perfect.
oh christina! what a day! just know you are on the right path, that you know your girl best, that there will be good days and bad days and a really annoying “system” you will learn to use to your families best interest. hugs for you and cordy, and aaron and mira as well. a big step today, but early intervention is amazing!
Oh man, C. I’m sorry you’re going through all this. I just hope you keep that last paragraph in mind all the time. Not just as a writer, but as a mom.
Beautiful description of your daughters strengths. Definatley a keeper to shjow her when she is older. Very sweet 🙂
Another lurker coming out of the shadows to offer a virtual hug and to tell you how lucky I think Cordelia is to have you for a mom. Your love for her shines through in every post.
(((((hugs)))))
I am so sorry you are feeling so overwhelmed. You have so much on your plate I can’t even imagine.
I wish there was more I could say or do for you… you handle everything amazingly well. And from what I’ve seen of Cordy, you are right, she is an amazing little girl!!
Your positive outlook will be such a blessing to you and your daughter as you navigate through this. How you described her is so beautiful. I hope you write that down and frame it for her. Knowing how much you love her and how wonderful you think she is will do so much for her self esteem. For what it’s worth, I have a good friend whose son has PDD-NOS and is doing very well. She has taken advantage of all the services offered and he is thriving.
I can’t imagine how difficult all of this has been for you and getting a diagnosis must be both a relief and a heartache.
You know you’ve got one of the best children’s hospitals right in your backyard and I understand your city/state does quite a bit with early intervention.
Additionally, Cordy has you advocating for her so she’s already ahead of the game.
That last paragraph brought tears to my eyes.
I’m sorry to hear about the autism diagnosis, but I’m glad to know that Cordy is getting the help she needs. You guys are a strong family and are exactly the support she needs. Hang in there.
Re: Dentistry: Unfortunately, many kids with sensory issues also have enamel problems. It is a cruel irony, since the kids are uncomfortable, but also more likely to get cavities. We had to put my son under anesthesia to have dental work done. UGH!
Re: The evaluation: I am still amazed that everything is happening so fast – but also amazed that they had other children/parents there at the same time. At our eval, everything was very “secret” and pretty “shameful.” (Here… you’re here for *that type* of evaluation? [whisper] Go upstairs! To the back!”)
Best of luck with the preschool!
Yes, our evaluation with the school was one on one and no other children were there. Tony didn’t have a meltdown, but he was not very cooperative. Autism was never mentioned. He started pre k last year (for speech delays)but I was still seeing signs of “odd behaviors,” meltdowns, fixating on certain things…and I started reading. After 2 more IEP’s the school said he was depressed. I brought up autism, which he was tested for but they wanted to focus on “depression.” Over the summer, we went to see a neurologist who agreed with me on the PDD. Trust me, it is hard. I still have my days where I just cry and cry, but after that cry, I keep on moving along.
My best wishes for you and your little family. Kudos to you for going in and getting the evaluation. That is so hard!!
I stumbled onto your blog through blogher…this might be long, but I wanted to reach out to you.
First, please let me commend you on recognizing that there was a difference in your child and for taking her to find out what it is. So many parents are in denial that there may be a difference and that alone is scary. I spent many years seeing children who needed help not receive it because their parents were in denial.
Second, after reading some of the discription of Cordy, she sounds very much like a little boy that I used to teach a one on one swimming lesson to weekly and also a boy that lives in my home town that I grew to know well. Both are possibly the most compassionate youngsters that I have ever met (and after 8 years of teaching swimming lessons (special needs, private, and regular group), being the oldest grandchild in about a bazillion, and volunteering in an elementary school – well, I’ve met my fair share of youngsters!) They see the world through a different set of eyes, that is for sure, but they care so much about how you see it too! (Even if they don’t agree with you!) My have been blessed with ever interaction I have with them…even the frustrating ones!
Mental hugs to you and your family. You are on the right path to helping your child and that’s what good parenting is all about. I’m not sure what state you are in, but most states have organizations to help parents find support networks. Sometimes it helps just to know you’re not doing it.
Remember that nothing is impossible, sometimes it just has to be done differently…