The IEP Meeting

47fe06afb90ea3bcf1f1080e661c41d5I have been  hiding out. And insanely busy. I can honestly say I sorta like when that happens because I don’t dwell on little things. Like dirty houses or unfinished projects. And then life slows down and I am standing in chaos. So typical.

Cooper’s IEP meeting was last week. First, it was 2.5 hours long. In a tiny room, that was way too hot, with 4 people. The people were very, very, very nice. But, it doesn’t matter how nice they are when the focus on the meeting is everything that your child can’t do.

I went with a completely zen spirit. We both did actually. We found out when we arrived that this wasn’t actually the IEP…it was Cooper’s educational care plan. And for all the mom’s out there that are new to this a word of advice. Every single thing you ever say will go in this care plan. I am not saying this is necessarily a bad thing it is just so weird. Cooper’s care plan was 20 pages long. Front and back. Oh. My. God. And this is why it took 2.5 hours.

The teachers did multiple tests with Cooper. He failed every single one of them. I know failed is a strong word but it’s the truth. “Average” kids score between 70-100. Cooper was in the 40’s in almost all categories. It was really hard to read that. And hear it. And discuss it. The only area that Cooper was in the average range was for fine motor and gross motor. I was surprised by that.

I wouldn’t say it was all negative but I had to dig pretty deep to find the positives.

At the very end we spoke about Cooper’s developmental delays and I finally broke down. I had a good 60 seconds of ugly crying. I felt like I was on a busy street with people rushing by me. I was sobbing and  no one actually saw me.  It was the weirdest feeling. I just wanted to be done with all of it. I wanted to run away.

I would describe it this way. 4 strangers are saying horrible things about your child. They hurt you and devastate you and you have no choice but to sit their and listen and take it. And then it dawns on you that the things are all true.

So…the future.

Cooper will attend a developmental preschool in the fall. He will go 4 days a week for 3 hours a day. They will offer him speech, OT and PT. The preschool will be 100% language focused. There will be a max of 8 kids in the class with 1 teacher and 2-3 aides. Their other focuses will be on establishing a routine. This is the best possible outcome that could have came from all of this. We are meeting on  Thursday at the preschool to write his IEP.

I want to be happy. I really, really do. I am just so numb to all of it. My hope is so unbelievably low. I love Cooper and I always will. I will fight for him until I die but on the inside I want to give up. I think I am so scared that he will go to school and it won’t help. What if I have the one child that school doesn’t help? In 6 months Cooper will be four. That is so scary.

I am passed hoping Cooper has a normal life. Passed hoping that he goes to school and makes friends and plays sports. Right now I am hoping that some day he can put his own shoes on. And say “I love you” mom. And maybe go into a store and use a bathroom. Or ask a person for help. And at this very moment I can’t say with certainty that he will ever do those things. I want to be wrong.

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Kate Swenson

Kate Swenson lives in Minnesota with her husband Jamie, and four children, Cooper, Sawyer, Harbor and Wynnie. Kate launched Finding Cooper's Voice from her couch while her now 11-year-old son Cooper was being diagnosed with autism. Back then it was a place to write. Today it is a living, thriving community of people who want to not only advocate for autism, but also make the world a better place for individuals with disabilities and their families. Her first book, Forever Boy, will be released, April 5, 2022.

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  1. Jill on June 2, 2014 at 12:21 pm

    I have been coming here daily to see when you were going to post about Cooper’s IEP. Mason right now is in a private preschool in a program for children with autism since he was 2, but we did have him evaluated by our public school to see what they had to offer once he turned 3 and aged out of Early Intervention and became eligible. I totally understand your feelings. I didn’t end up crying at Mason’s IEP meeting, but I got choked up and had to fight back tears. Seeing the words in black and white is like a stab through your heart even though you know it is true. I am fully aware of Mason’s developmental delays and how far behind he is (Mason has been getting these evals since he was 15 months old- he had an IFSP through Early Intervention), but seeing it on a big screen is the equivalent of someone ripping your heart out..Please let me know if I can help you in any way Kate.

    • Avatar photo findingcoopersvoice on June 2, 2014 at 12:59 pm

      You are so wonderful Jill. Thank you. I think I am a lot like you. I know Cooper’s delays. There are NO surprises there. But seeing it on paper was awful. It was like he wasn’t even a kid. Just a robot or something. Hugs to you!

      • Jill on June 2, 2014 at 2:18 pm

        That is such a good description-I felt like I was not reading about my child…but about something that was not a person. Does the developmental preschool offer ABA (Applied Behavioral Analysis) therapy? I really think Cooper would benefit from it if they do…Mason gets 20 hours a week and I swear it has changed his life.

        • Avatar photo findingcoopersvoice on June 2, 2014 at 8:46 pm

          I don’t know if they do or not. I will definitely ask. I ‘believe’ that all of my questions will finally be answered on Thursday when we go to his classroom and meet his teacher.

  2. Jenny Michelle Rapson on June 2, 2014 at 12:57 pm

    I remember at Sophie’s 1st IEP meeting…I didn’t cry there but I went home and cried long, hard, and ugly. You’re rignt, it is VERY hard and can be demoralizing. But I have to say, the program he is going into sounds awesome! Max of 8 kids! That is incredible! My kids’ program had a max of 14. It wasn’t always full, but still. And they just had one teacher and an aide…sounds like Cooper will have more staff. As a parent who has seen developmental preschool make a big difference in her kids’ life, I am really excited for you and Cooper.
    I may have already told you think, but before Jonah started, I went to the classroom and took tons of pics and made a photo book out of them and wrote a story to go with it I called “Jonah’s new school” – he LOVED it and we read it ad nauseum for about 2 weeks before he started and when he walked into class it was like he already KNEW where he was, who his teachers were, etc (they let me take their pictures.) It was great. Highly recommend you do this for Coop if they will let you visit the class and take pics.
    Hang in there mama, I am praying for you guys. I know it is hard. But I am really glad Cooper has an awesome mom like you,

    • Avatar photo findingcoopersvoice on June 2, 2014 at 8:45 pm

      That is the best idea Jenny! I love it! I am totally going to do that. Thank you for the positive comments. Deep down I am praying and hoping that it helps. And I know that it has too! Thanks again!

  3. VeganDee on June 3, 2014 at 1:01 am

    Kate…. As I read your journal entry, it occurs to me. We should call you “Kourageous Kate.” Because….you are! Ugly cry or not, you are one kourageous lady.

    • Avatar photo findingcoopersvoice on June 3, 2014 at 8:33 pm

      You are so sweet. Thanks friend!

  4. A Miracle In the Works on June 3, 2014 at 2:49 pm

    Sending big hugs to a brave mama and an amazing little boy!!

    • Avatar photo findingcoopersvoice on June 3, 2014 at 8:32 pm


  5. ontheupcyclemom on June 4, 2014 at 6:14 pm

    I am on a similar journey and your words have helped me a great deal. It is nice to know I am not alone going through these emotions. I find that so much of what you write hits home for me. When I received my daughter’s evaluations and seeing words like “severe developmental delay” really cut me like a knife. I cried as one by one they arrived in the mail. I didn’t agree with the way in which the testing was done, but at the end of the day I was glad she qualified for Preschool because she needs the help. The initial IEP was so vague on goals that me and her early intervention teacher rewrote it adding clearer goals. I didn’t want to be difficult, but if we don’t advocate for her as parents then who will? In our area their is a year waiting list to see a developmental pediatrician. So we are left to wonder what is going on and have so many more questions then answers. It leaves you in a limbo. Don’t lose hope! Our daughter started Preschool two weeks ago and I have noticed a positive change already. She still only speaks in one or two word phrases, but this has increased and she waits by the door with her back pack to go. You are a great mom and your son is so lucky to have you! Hugs

    • ontheupcyclemom on June 4, 2014 at 6:25 pm

      Oh and I have had my share of Ugly cries too! You love your child! This is a lot to go through even for he strongest people! If you ever want to talk my personal e-mail is : ) Take Care!

    • Avatar photo findingcoopersvoice on June 4, 2014 at 10:15 pm

      I am so glad that my posts have helped you. That makes me so happy. I am here for you as well. Although I love Cooper more than anything in the whole entire world, the journey is lonely. As much as my family wants to help me there are certain things only another mother can understand. Hugs friend!

  6. ontheupcyclemom on June 4, 2014 at 10:29 pm

    I am glad to hear you have your family. Some of mine have been supportive and others I have had to cut out. It is amazing that someone close to you could be so cruel and non supportive, but sadly it happens. This is a tough enough journey to go through. It is just nice that even though it feels lonely we are not alone…: )

  7. findingjonah on June 5, 2014 at 1:41 am

    Well, I’ll tell you right now, you are wrong. He may not ever speak, “I love you.” But he will show you. He may not play sports or have lots of friends, but he will have his own special interests. He will learn so much in school next year. He will see what is expected of him, see what other kids are doing, and he will see that he gets rewarded for good behaviors. And even if he only learns ONE thing, it will be progress. Even if he NEVER talks, he will learn to communicate more efficiently.
    One of Jonah’s therapists told me that he uses soap to wash his hands there. I was in shock. He screams when I try to put soap on his hands. Her response? “You would be surprised what kids will do for other people when parents aren’t around.”
    And yes, soon Cooper will be four…celebrate it. Do something special for him for his birthday. If he doesn’t like parties, take him to the movies. If he doesn’t like cake, get him a cookie. You have an AMAZING little boy who is going to do wonderful things, in his own time.

    • VeganDee on June 5, 2014 at 11:02 am

      This message knocked me out of my chair. So well said. And I believe! !