Category Archives: down syndrome

How to get the best IEP (part Two)

boy with ds
What if they want to include only one part on my child’s IEP?

I always advise people to get a ‘full’ IEP, this will cover you in the future. If you only get speech services on the written IEP, you will need to meet in the future for another IEP to be written before they will offer help with other services.

What if I work and the IEP is scheduled for the morning?

In my state the IEP meeting must be done at the parent’s convenience, meaning if you work they will need to change it to a time when you are off work. Keep in mind if you schedule it as soon after school is out of session, this will allow for a more receptive meeting.

What if they refuse to write an IEP?

If the school is refusing make sure you have in writing along with the reason. Talk to the Special Education Department if the letter is written by another source. If that is not the case then check with your state education department to find out how to proceed.

My child’s IEP has goals that are too difficult for my child.

Keep in mind this is a plan that will span an entire year or more, and can be repeated onto the following IEP.  If you feel your child will not be able to begin to master this goal, ask if it can be broken down into smaller steps so your child will succeed.  If the goal wants the child to choose between seven different activities, see if it could be written as two activities with more added as the grading periods proceed; or ask that the choice between two be written with increasing percentages at each grading period.

Make sure the goals are agreeable and doable before you sign the papers. If needed you can request to take a copy home and look it over before signing.

I feel forced into agreeing with the IEP goals.

Don’t let yourself feel bullied. At one meeting I found myself around a table of about eight school officials and felt very intimidated. After that I took someone with me for several years. One therapist stood up and demanded I choose to dress my child according to her ideas. I refused and she just about shot out of her seat. My friend who sat by my side, interceded by saying very firmly “I believe ‘Mom’ has said no”. End of conversation. If you feel intimidated, excuse yourself and reschedule at a time when you can have support in the meeting.

Remember why you are there.

You are there to orchestrate a better way of educating your child. His/her disabilities need to be properly and realistically addressed in the IEP. Don’t allow the IEP to state goals that are far under or over your child’s ability but keep in mind the goals are for stretching their abilities.

If your child is in a wheelchair and cannot talk or move independently, you may want to avoid goals that expect brushing their teeth on their own or dressing themselves. A better goal might be to choose between two activities by pressing the proper button which has a picture of the activity next to it.

You are in the meeting to add substance and meaning to the educational plan. You may need to impress them with the reality of who your child is so the goals are realistic and encouraging to your child.

If you realize after the meeting that something was left out, ask yourself if this was something important or can it be done next time? If it can wait be sure to write it on your list for the future IEP.

Also if you see your child progressing rapidly through the IEP you may need to reschedule another meeting to re-write the document and make it more workable for your child.

If this or any other post has helped you, please let me know in the comments section below, or if you need clarification or think I missed passing on more information please let me know. Thanks and have a great week!




Build a Heart

IMG_20140111_104256This weekend Brody and I traveled to “Build a Bear”,  in case you’re not familiar with the store, you can choose a character, stuff it, put sounds inside it, even get a beating heart for it. After all that,  you stuff it and clothe it and ‘gear it up’. This was a Christmas gift to him and he announced to me on the way over__as if I didn’t already know this that he was “excited” to be going.  Of course one of the people giving him this gift was going along and she is one of his very favorite people.

As we entered the store I was relating it to how God has molded and made each of us.

13 For you created my inmost being;
you knit me together in my mother’s womb.
14 I praise you because I am fearfully and wonderfully made;
your works are wonderful, I know that full well.  Psalm 139:13-14 (NIV)

He was there in the beginning, putting our bodies and spirits together, knowing who we were before we were known to ANYONE else. How miraculous is that?! He paired my attached 5th and 21st chromosomes to Brody’s chromosomes to give him that extra 21st chromosome. He knew how precious he would be, how endearing he would become to so many people. He is an amazing child and God has given him equally amazing people to fill in the emptiness of no longer having a father.  We are truly blessed.

The first moment Brody saw ‘Moose’  he grabbed and hugged him even without his stuffing, just I’m sure as God does with us without our ‘stuffing’. I watched him place the heart in his dog “Moose”, added the stuffing__deciding just how much would be the best for hugs. I remembered how his tiny beating heart attached around mine as I carried him, not knowing the whole story. I watched him bath ‘Moose’ and brush him as a mother would a child.

It amazed me once again at how much detail God puts into our lives, every detail is thought of.  Brody’s extra chromosome was planned out from even before my birth when the mutation occurred that would cause his trans-location. Wow! What a wonderful, thoughtful and loving God we have. Brody’s anticipation of his companion reminded me of God’s anticipation of our hearts longing for Him and finally coming home to His open arms as we make our decision to follow Him. I pray my awe of God’s wonderful details will never get lost in my life. I will leave you with some pics of Brody’s event this weekend. Blessings to each of you, may you each feel the awesomeness of God’s details in your lives yourselves this


Brushing his hair after the shower

Brushing his hair after the shower


Those aren't wings, they're just our coats resting on his chair. Doesn't he look happy?

Those aren’t wings, they’re just our coats resting on his chair. Doesn’t he look happy?




reporting on the daily shenanigans of my life

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down syndrome, single motherhood and blessings from God


down syndrome, single motherhood and blessings from God

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