Tuesday, May 8, 2012

Not For The Faint Of Heart...

This morning was Gavin's first, official IEP with the school district.  Even though I had zero intention of sending him to Kindergarten, I still went through with it.  Why?  Well, I was advised to.  And - even though part of me felt it didn't seem to make sense "going through the IEP motions" when I knew we weren't sending him to Kindergarten, I saw several "pros" to the situation.  One - I could actually see what an official IEP was like.  Two - Goals could be written for Gavin that we could work on accomplishing between now and the day that he actually DOES start Kindergarten.  And three - I was dying to know what school or schools the school district was going to recommend for him.  Going through this IEP was the only way to get those recommendations.

So I went.  And I came home feeling VERY bad about myself.  This morning, my world shifted on its axis.

When I walked into the room for the meeting, I saw a team of people there and felt myself having to swallow a large, overwhelming emotion.  All of a sudden I realized the enormity of this.  All of these people were taking time to sit and talk about my son!  It moved me.  Some of them I recognized because they had come to the house to evaluate Gavin, but most were strangers...including the Principal of the school.  As I made my way to the empty folding chair I spotted - two people simultaneously asked, "Is your husband with you?"

Uh..... no?  

I instantly felt shame.  Was he supposed to be here?  Do most husbands come to these?  I didn't even really fill Ed in on the details of the date and time and, to be honest, I'm not even sure he would know what an IEP is.  At this point in Gavin's life, I handle all the therapy and school stuff.  While that may change in the future and Ed will surely and happily be more involved - it hasn't seemed necessary for us.  But instantly I felt like I was getting this off on the wrong foot.  The folding chair next to me remained empty for the entire meeting.

The woman moderating the meeting asked if I had any questions about the evaluations before they got started.  And she motioned to the psychologist who strangely said to me, "I sent you an email, but I didn't get any response from you."  She stared at me quietly waiting for a response.  I came up with the brilliant, 

"You did?"

I felt my cheeks get hot.  What the hell?  Second strike against the unprepared Mom!!  What was this email?  Was it a question I was supposed to respond to?  She never elaborated so I spent many moments during the IEP wondering and worrying that I forgot to respond to an important email.  Then I got annoyed - she's the professional!  If I didn't respond to an email, couldn't she have followed up with a call?  Another email?  A letter?  A smoke signal?

(I got more annoyed when I came home and searched her name in my emails.  When I found it and re-read it I remembered getting it and thinking that it didn't need a response.  She was thanking me for having her into our home to evaluate Gavin and said if I had any questions to feel free to contact her.  I didn't have questions - so I didn't contact her!  There was no reason for the awkward encounter this morning.  So frustrating.)

As the meeting went on and we read through each section, the moderator would stop and ask me if I had any questions or had anything to add.  

"Nope!" was my anxiety ridden, thoughtful response.

Inside I was thinking...what can I say?  Most of the report was accurate.  Although I know - and you know from reading - that Gavin has made GREAT strides and is a true Superhero in our eyes, the truth remains that he is extremely delayed.  He scored "low" or "less than low" in every area:  communication, gross motor, fine motor, safety awareness, social, developmental, you name it.  It's something I choose not to focus on that much.  And quite honestly, when you live with him and know how far he's come - it's easy to forget a lot of that crap.  Honestly.  But even these evaluators who met him briefly and came up with pages of written reports and recommendations - they got a lot of it right.  And reading their IEP goals - like getting Gavin to recognize his name or working on independent toileting or using his walker without help - I realized they were all things I agreed with.  And when they told me that Gavin would need to be taken out of class for all of his therapy, but would participate in activities like recess and lunch with his peers...and that they would re-assess as time went by if he could participate in other activities - I thought I should feel outrage!  Anger!  Like he wasn't included!!  But I didn't.  I got it.  If Gavin was getting his therapy in a classroom with other things going on - he wouldn't be able to focus.  But was that the right thing to do?  I started to worry.  I always hear other parents talking about their IEPs - what they had to fight for, stand up for, bring legal representation for, etc.  I started to worry that because this seemed to "easy" - that I must not be doing it right.

There was an administrative supervisor there that mentioned throughout the meeting that she hoped I would consider holding Gavin back.  That they all thought he would benefit from another year in "pre-school" to give him more time to mature and progress.  And she mentioned the new classroom that I referred to the other day that will be right there in the Kindergarten Center.  Each time she brought it up, she turned her head to the side and said with a concerned face, "Gavin would be a 'pioneer' in this brand new classroom" almost like it was a negative.  I already knew that I was holding him back going into this meeting.  And I already knew that it was that pre-school classroom that she referred to that I was looking at.  But when she said that Gavin would be a pioneer - I only saw the positive!  It would be a small classroom for kids with multiple disabilities like Gavin - and they would also bring in some typically developing peers.  Since it is brand new, it would all be tailored to Gavin and the other kids!  I think this is amazing news and when it opens (in August) I am hoping Gavin will be walking in with Miss Sara.

In the end, the only thing I really pushed for was that Gavin be allowed to have an Aide of our choosing (in our case, Sara) to go to school with him...whether it was the pre-school classroom or Kindergarten.  There was no immediate answer - it was something they had to 'look into.'  

And also in the end, when I asked what their Kindergarten recommendations were - it seemed like they only had one in mind.  I was expecting a formal recommendation or two.  It seemed like they wanted to formalize the IEP and then contact schools to see if they would take Gavin.  The only school that they had in mind for him today was a school called "CDC", which stands for the Child and Career Development Center.  I have heard from other parents that this is like a warehouse for kids with pretty severe disabilities and emotional issues.  I have not personally visited this school - but from what I have heard and read, I'm not interested.

I spent some time after the meeting speaking with the supervisor about the pre-school classroom and expressing my interest.  She was very nice and even asked if I had any photos of Gavin so she could put a face with the name.  I made a mental note to ALWAYS bring photos of Gavin to every IEP meeting for the rest of his life.  I felt so grateful to her for asking to see him - and telling me how much she wanted him in the new pre-school classroom.

I walked to my car...got in...closed the door...and sobbed.


What will become of Gavin?  Will he be destined for a life of being shuttled to buildings in the hope that somehow, someone will unlock him?  Will he talk?  And walk?  And go to the bathroom alone?  Will he learn his shapes...and his name...and how to feed himself?  

And then there's me.  Have I held him back?  Was I completely unprepared for his IEP?  I started to think about his day - I don't spend every moment drilling him with educational activities.  Should I?  Would he be doing so much more with a better Mom?  If I were smarter (I mean it) and more disciplined (truth!) I would absolutely home school.  Then I wouldn't have to worry about schools I don't like - or facing the fact that he's so delayed - or sending my defenseless, non verbal, sweet, trusting, beautiful child out into a world filled with sickos.  I pulled into the garage feeling very overwhelmed.

I walked in the house and was greeted by Brian and Miss Sara.  I spotted Gavin in the den and made my way over to him.  I knelt down and he stared into my eyes.  Gavin doesn't make a lot of eye contact usually.  But today, he intently stared at me with eyes that looked almost desperate.  What was he trying to tell me?  I came in with my own baggage so I thought for sure he was saying with his eyes, 

"Mommy - why did you go to that meeting so unprepared?  Don't you love me?  Please don't send me to a warehouse."

But I snapped out of it - distracted by his extremely runny nose.  I brought him into the kitchen, gave him some medicine and instantly he started to cry.  And cry.  When we were going on an hour of him crying and me trying everything to figure out what was wrong - I called the doctor.  You must fit him in right away, I told them.  Gavin NEVER cries - and real tears are coming out of his eyes.  There is something wrong...and it can't be that his Mommy didn't respond to an email or that she didn't tell his Daddy that he should go to the IEP or that they recommended placing him in a warehouse, er, I mean school.  

Gavin and I got to the doctor by hour two of him screaming and crying and almost throwing up from the pain.

Double ear infection.  Oh and the rash that developed all over his legs was a viral rash.  It might be itchy, but Gavin wouldn't be able to tell us or even itch it.  I cried for his suffering.

I cried all the way to the pharmacy for his antibiotic.

I cried all the way home as he sat passed out from exhaustion in his carseat.

I sent Miss Sara home early and, with the boys down for naps, I sat and cried some more.  Once I started crying about the IEP...I remembered all the other reasons I needed to cry.

I'm feeling inadequate as the boys' Mom.  Maybe I don't do enough with them.  I have one child with major delays - and one child with speech delays.  Coincidence?  Maybe not.

We're ALL sick - which may explain my mood.  I feel like crap.  And I am so tired of the boys getting sick.

I miss my Dad.  A lot.

I want my daughter back.  In two days, May 10th, it will be the second anniversary of her birth.  Why did that have to happen???  Why does a lot of the shit that has happened to me...to us...have to happen??  What the hell did I do to deserve this???


Today I just feel...overwhelmed.  Very sad.  Depressed.  With all of us sick, Gavin's therapy is canceled and Brian is out of school.  What I really want to do is lock the door - stay in our pajamas all day for the rest of the week and watch a continuous loop of Disney shows.  I want to lay on the couch, hand Brian the iPad to entertain himself and cry all day.  I want to skip over Thursday and not face the fact for one whole day that I missed out on the chance to raise my daughter, Darcy.  I want to spend at least an hour giving God a piece of my mind.  Don't worry - I know my God can take it.

Having a child with disabilities - especially when he's such a mystery - is so difficult.  There's no real road map - and every new person in his life needs directions.  Every day is another chance for me to make a wrong turn and it's so, very stressful.  It really is.  I just hope, in the end, I don't screw up these kids too much.

If you made it to the end, I'm very impressed.  Today's "Mother's Day Project" will be postponed to tomorrow's blog.  I don't want my tribute to my Mom to be overshadowed with all of my bull*&#@ and whining!  Besides, I'm hoping that tomorrow I'll be better.  Or I'll be up to faking it.


p.s.  Today's photos are totally gratuitous, old pictures from a happy time in my life - posted with the self indulgent intention of cheering me up.



13 comments:

  1. I made it to the end - and wanted to let you know that I'm thinking of you all!

    Love,
    Elayne

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  2. IEPs are hard. Even when we see progress there are still so many goals to work towards....but it does get a bit easier. Emma's been in preschool and when we moved to this state I was very impressed with the staff, the goals, the plans. There wasn't much of a fight since we were on much the same page. It was very refreshing.

    I'm wondering why Gavin wouldn't be put in the neighborhood school in an inclusion setting? I thought all of our state subscribed to inclusion settings for school. Also, I know Gavin is a couple of days older than Emma but I would have thought he would be in pre-K next year and not Kindergarten. Emma will be pre-K next year giving us another year to figure it out before Kindergarten.

    Oh, and have you looked at HMS school for children with cerebral palsy at all? I met them at Abilities Expo this week and will go and have a tour. I'm very into inclusion settings but think I should check the school out with an open mind since their forte is on augmentative communication.

    Go easy on yourself. IEPs are hard! Our children need to be children so I focus on fun and adventure at home and let school focus on education. Of course we read at home and do educational activities but we make sure that our life is more fun than therapy, more adventure than chore. Our children are children first! Enjoy them and hope you feel better tomorrow - as my parents say everything always looks better after a good night's sleep.

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  3. Kristina,
    Thanks for the note - and the advice. Our school district changed the cut off to just a couple days after Gavin's birthday so he could (if I wanted him to) go to Kindergarten this year. But I won't be sending him. I would probably not consider HMS because of the location - I can't imagine sending Gavin into the city. We're really emotionally attached to the Camp Hill Special School in Glenmoore.

    As for inclusion - that's a whole other post. I don't see Gavin in a regular classroom at this time. I fear that makes me sound like a horrible Mom, but I don't think it would be best for him. He's just not 'there' yet in my opinion.

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  4. Kate,
    How my heart hurts for you. I am a special ed teacher - and have written hundreds of IEPs over the years. My number one piece of advice is: KNOW YOUR RIGHTS!!! The school district should provide you with a copy every time a meeting is scheduled! I would recommend that you always carry someone with you - it doesn't have to be Ed - it can be an advocate for Gavin (as well as you). I would always ask for a copy of the draft IEP before the meeting so that you can review it before the meeting and this will keep you from going into the meeting uninformed. It also give you the chance to prepare your questions ahead of time. As for the advocate - my SPED director has graciously allowed me to attend meetings in other districts (as family and friends have asked) If you have someone near you who is a special educator - use them as a resource or possibly an advocate. I am also sure that your town should have a disabilities and special needs board - use them as well. Last but not least - find yourself a support group - many many parents have been down this road and in a support goup near your home can help you with resources in your area. Best of luck! If you ever need me or need an English translations - feel free to message me.

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  5. I made it to the end. I want you to know that I have followed your blog and that you have helped me to be a better mom to my child who is also a mystery with no road map.

    Tomorrow will be better, but as you know the life of a special needs family doesn't just have bumps in the road...we have craters, flat tires and multiple care pile ups. But, our destinations are that much sweeter.

    Hang in there, and know that you are not only admired, but prayed for.

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  6. I just want to give you the biggest hug!
    Remember to go easy on yourself (sorry, don't know if that's an expression you use in the US), and do whatever you need to help yourself feel better. I've lost count of the number of times I've held Isaac close and cuddled him with tears streaming down my face knowing that although it's really really hard, I'd rather that than the alternative (which was a very real possibility).

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  7. I'm relatively new to your blog. It think I first discovered you when you had a guest post on "Love that Max"? I think. Anyway, I immediately felt a connection with you so I suscribed to your blog. Today's post especially resonated with me. I've been there. My now 12 yr old son has a traumatic brain injury from a 2 story fall when he was 3 yrs old. He fell from a window that I had inadvertently left open. If any Mom has reason to feel guilty about their child's circumstances, it is me. The emotions you described at your IEP meeting are so similar to my first IEP meeting. I hope that I can give you some encouragement though. Because I've been through it and learned so much since then. You love your child more than anyone else. Everyone at the IEP meeting has a job that they do, and they probably even care about your child. But they don't love him or know him like you do. Always trust your instincts and don't be afraid to ask questions and ask for what you want. I kept my son at home until he was 6 because we were working on intensive home-based therapy. He then went to K-4th grade at public elementary school. At that point we decided to start homeschooling. I don't regret the time he spent at school, but it reached a point where homeschooling would be best for him. The schools are driven by SOL's. At home, I am able to teach him at his level. He is not on grade-level and he's on different levels in every subject. But, I really do think his time at public school was valuable. I'm not advocating either way, just saying that you should do whatever is best for you and your family. You won't mess up your child or his education. I know it seems so overwhelming. I wish I could save you all of the stress and worry that I went through. I can see now how so much of it was not necessary. You're Gavin's Mom because God chose you to be the Mom of a very special child. You're exactly what he needs and I assure you, you will make mistakes, but you won't mess him up. I'll be praying for you as you make these decisions about Gavin's education and everything that goes with that. If I can be of any help to you, please let me know!

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  8. Dear Kate,
    I've been reading for a year or so, and I made it to the end of this one too. That meeting sounds intense, and I'm sorry you were made to feel so wrong-footed from the start. You are the best parent for your children. You are doing the best you can. You will make mistakes at times, and you will sort them out.

    I love that you post your authentic thoughts & fears, and I love how you got what seems like good advice from the special ed teacher & Tricia above.

    I have a "normal" very high needs, sensitive, spirited intense almost 7 year old son. Being a parent takes a tremendous amount out of me and is also very painful as I see what my kid needs and what I didn't get in my childhood, and what I feel ill equipped to do. I am in AWE of all that you do for your kids. Please try not to question if you do enough. If you need to do more, it will become clear, and you'll do it, or find someone who will do it.

    Thinking of you and wishing you peace and clarity throughout this process. Take care of yourself.

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  9. Dear Kate,

    I want to second what Lisa F. wrote. I read your journal regularly, but rarely comment. Lisa has put everything I want to say in much better words than I ever could. My almost 7 year old sounds like hers and I feel very much like her. But not a day goes by when I am not in awe of your dedication and skill (!) with which you handle everything. This superhero has a supermom.

    And thanks for the detailed description of the IEP process. It was very interesting and informative to read.

    - Fidi (from some iVillage board way back when...)

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  10. OMG You are a wonderful, amazing mom who always puts her kids 1st! You do everything you can for them. Neither could ever find a better mom. Stop being so hard on yourself...I'm sure the stress of thinking about your precious Darcy Claire makes all this seem even worse. It was only your 1st experience with an IEP meeting.Take a deep breath, look how HAPPY your boys are,and know you are doing your very best and that that is MORE than good enough! Prayers...

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  12. You had me laughing and crying tonight with this old post! I saw me and so many of my friends and other mothers in it. I was the pajama mama, not the odd email sender (although we all know her). I don't know why things have to happen like they do either. Bless your heart. Saying a prayer for your little family tonight. Peace be with you.

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  13. My heart feels for you and your family. Y'all have been through a lot.I have cried reading your stories.I am a mom of 5 children and 13 plus one on the way grand children. I would NOT know how to deal with all that you are and have gone through. You are one STRONG woman and GOD does not give us more on our plate than we can handle. YOU are a very good,loving mom and wife...never doubt that or question it. God has something AMAZING in store for you . Keep the faith honey,stay strong and i will be keeping you and your family in my prayers.
    ((Hugs)) to you. <3 <3 <3

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