Thursday, April 3, 2008

Trusting My Instincts

Somehow I just knew that Jack needed that autism diagnosis. Somehow I knew that without it he would end up without the services he needs. I think I was right.

I sent the report with Jack's diagnosis into his school's parent educator a couple of weeks ago. This week the school psychologist called me. She wanted to talk about my plans for Jack for next year.

Here were our options:

1) We leave Jack with his "Developmental Delay" code, which gets him no services for next year. Apparently the staff is really excited about Jack and think he'll do great without supports. (Gah?!)

2) We re-code him, which will take up to 90 days, and involve some re-evaluation or some going over of his report, or something. We won't hear what they decide until probably the end of May or beginning of June.

The only advantage of Option 1, as I see it, is that he wouldn't be "labeled" as autistic. I immediately told the psychologist that we will be going ahead with Option 2. She was very positive and said she knows the people at NIMH who evaluated Jack, so hopefully she'll give him the autism code that he needs.

But thank God we have a diagnosis. Ever since after our first testing session when the therapists told Jack's then-teacher that they didn't know why he was even being evaluated, I knew I was going to have to make sure my ducks were in a row. Thankfully a county psychologist observed him in school and saw that he didn't behave in a typical manner. That's how he ended up in his afternoon special ed school this year.

Partly because of that, I really wanted to pursue a diagnosis. We got on the waiting list for Kennedy Krieger, but that wouldn't have come up in time. In fact, I got a call from them on Monday. Right now, he's scheduled for an evaluation in July, but we will likely end up canceling that if the county accepts Jack's current diagnosis.

Alex heard about the NIMH study and got us enrolled for the screening from which we got a diagnosis and therefore seem to have been saved from an IEP meeting where a bunch of therapists would have told us that Jack is fine and doesn't need supports for kindergarten.

Which leads me to another way in which I trusted my instincts. Even though he has a long day with both his morning and afternoon school, I really wanted him in a mainstream-style school with "typical" kids so as to get an idea of how he will do with them. I don't know how much credence the county will lend to my anecdotal evidence, but I'm glad that I have this experience to share with the educators who will decide what services he gets.

I have no doubt that he is doing great in his special ed class with all of the support he gets. But even there they can't get him to do his work half of the time. I know at his morning preschool that it can be really hard to get him to participate and follow directions.

I see Sam come home with sheafs of papers that he's completed. I cannot even imagine Jack willingly completing all of them—especially without support.

I'm meeting with the parent educator tomorrow to talk more about our plans. I will tell her that my instincts tell me that he is not going to be able to hack kindergarten without help. Hopefully it will go well. If only all of them would trust my instincts as much as I'm learning to.

Now I just wish I could figure out what my instincts are regarding sending Jack to kindergarten or keeping him in preschool next year. If I could figure out precisely what my instincts were telling me, then I would listen.


  1. You are a good mama, and Jack is lucky to have you on his side. Way to go! I wish I had that much confidence in my instincts...I have to work on that.

  2. Jack is very lucky to have you on his side. But I do wonder why it always has to be so hard for us parents, why it always turns into us trying to convince them, as though we are pulling the wool over their eyes and seeking services simply to--to what? Why would we seek services if we didn't believe our children needed additional support? Why would we jump through all these hoops and hack our way through red tape simply for the fun of it??

    Sorry. It just shouldn't be that hard.

  3. Everyone always tells me no one knows your kid like you do. But I always second guess my insticts thinking I am a hypochrondriac. Congrats to you for keeping it real, and as for kindergarten, I struggled too and we held Charlie back. But as they say, every kid is different.

  4. Once he is forrmlly classified by the school district you may not have a choice since usually they will not provide services for a Kindergarten age child in an extra year of preschool. Don't know why.

  5. Yes, our instincts are always right, but it's so hard not to second guess them all the time. Believe me, I know.

    In our case, holding SB back a year was the right decision. What Anonymous said DID prove to be true ... we relied entirely on private therapies during that extra year of preschool.

    But you can always restart the IEP process next spring. And Jack's school may even be willing to start the year off honoring his old IEP (as SB's did when he switched from private to public school this past October).

    I remember when I was agonizing over this decision and everyone recommended I hold SB back. They also told me I had NO IDEA how much he could change in a year. Turns out they were right and wrong. Doing the kg waiver for a year and giving him that extra time to develop socially and learn how school works was invaluable. And he did grow ... A LOT. And like you indicated, he still couldn't hack kindergarten without a ton of support. Thank goodness his new school saw that and re-coded him accordingly.

    It shouldn't have to be this hard. Good luck with your decision.

  6. Mommy's instincts are always so amazingly right, 99% of the time! *wink*

  7. As you continue to get more info and move further into the process your instincts will tell you what is best when it is time to make the decision.

  8. Mama always knows best! Good for you for being his best advocate.

  9. BOTH your boys are lucky to have a smart, intuitive mama who's not afraid to fight for what they need! As for the KG question...I'm confident that the answer will reveal itself to you in time.

  10. This is a tough decision. We had to make it ourselves. We kept our son in preschool the extra year (despite the tuition expense) based on his preschool teacher's recommendation. Turns out, she really did know him best and he needed the time to really learn some more social skills. And his preschool was really just better equipped at handling his needs at the time. But we also didn't have our diagnosis at the time. I'm not sure if that would have changed our decision. That being said, kindergarten teachers should be equipped to handle the needs of the kids in their class - from the most mature to the youngest, most inexperienced. To help make your decision, will they allow you to observe a K. classroom to see if it will be a good fit for Jack in the near future?

  11. Um... no. I can't remember where in the system you are, but your services should never be determined by the label or category, but by the child's individual needs.

    If you are in Virginia, you call an eligibility meeting and have his category changed for special education. They have 65 (not 90) days to have that eligibility meeting, and the decision is made during that meeting- with you present. Be sure to provide copies of reports and studies you have had done to support the diagnosis, and recommendations from any service providers. If you have therapists, bring them with you if you possibly can.

    As for sending him to kindergarten, ask to observe the kindergarten classes and meet the teachers. Ask who his case manager will be, and speak with them. Consider the variety of environments he could be placed in, so YOU can get an idea of what would be appropriately "Least Restrictive." Send him to the best team.

    We ended up- unexpectedly- in a self-contained classroom for Joey. That was the best team, and it's worked out well for us. Other kids are doign better in the inclusion room. It just depends.

    Good luck!

  12. I only have enough energy to say good luck-- it won't be without challenges but you will learn along the way... Bubba's IEP meeting this week wiped me out. Moosie's IEP's are amazingly different and positive, but he is early childhood (different pot of money).

  13. Thanks, ladies. And I agree, it's ridiculous that we have to pull teeth to get services our children need.

    Jack would definitely lose most if not all of his services if we held him back. I had a long talk with his parent educator today that brought up a lot of things to think about. I'll post about it sometime soon. It sounded like she was going to recommend a lot of support. (Yay!)

    Susie, one of the reasons I'm so freaked about kindergarten is because my oldest is in kindergarten right now and I'm not sure Jack could do what the older one does.

    Joeymom, see this is why I love you. You are absolutely full of information. I'm in Maryland, so I don't know if it's different or not, but now I know to take a look. Thank you!

  14. Thank goodness for trusting your instincts. I know you have lots of decisions to make about preschool vs. kindergarten but you're really on top of it.

    We will also have to decide Sam's coding classification at the end of next year too. Right now he is just Dev. Delay and I'm really not sure what to do.

    Joeymom had lots of useful info. I would check out Maryland's web site. If you joined mc-needs listserve, this is probably a question you might be able to get answered by others who have gone through similar.

    And yes, we'd love to add you to Sam's schedule this summer :)

  15. Oh my lovely, I am so glad I don't have to make that decision again.

    We held Boo back. It was the best thing socially, but academically no. Thankfully his teachers are wonderful and see his need for extension in some areas considering he is 18 mths older than some of the kids in his class (school starts jan here, cut off is 5 by June, Boo's birthday is in October)

    You will make the right decision. I know you will babe.

  16. great job!

    Keep trusting yourself :)

    btw- I found MoCo VERY GOOD in terms of services provided for young children (my son received speech therapy in 2006)

  17. Re: your comment "I don't know how much credence the county will lend to my anecdotal evidence, but I'm glad that I have this experience to share with the educators who will decide what services he gets"
    -- I'm sure you know this, but the educators don't get to "decide" this without your buy-in. You know him best, and once you know all the options, YOU decide -- though of course you'll consider their recommendations.

    We went from being told about our 4-yr-old (PDD-NOS) "He's smart!" one week, to being told that he belonged in the self-contained autism classroom the next week. Um...nope; try again, folks. They did...but only after we made our case for what he needed in writing. Put EVERYTHING in writing, even if you think you made your point in a meeting or phone conversation. The paper trail will save you much time and stress in the long run.

    He will do well, and so will you! Hang in there.


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