Life without an IEP

Something I have not talked about much on my blog is the fact that NHL has been receiving physical therapy (PT) and occupational therapy (OT) services for years now. It all began when NHL was almost two and still not walking. He was talking sentences for months, but could not seem to let go to walk on his own. Balance was also a big challenge for him.

Daycare was concerned at the time and suggested that we call Early Intervention (EI) for an evaluation. I finally did. We quickly qualified for more comprehensive testing. Of course listening to some of the talk made me paranoid. There I was in my first full time teaching job worried that my baby may have cerebral palsy or worse.  JL and I took him to see a pediatric neurologist. She believed that NHL was hypotonic, hyperflexible and had very low muscle tone. She explained that his core muscles were making it hard for him to simply stand and balance.The simple things that we take for granted would exhaust him. She felt that adding aggressive PT into his mix would make a huge improvement.

A few months shy of his second birthday NHL began PT. Just a few weeks later while visiting Uncle I and Aunt M he walked alone for the first time. Lots of time and energy was spent working on his gross motor skills. Of course this was at a cost to his fine motor development. The December after he started EI I questioned the need for OT. Unfortunate for us, someone did not do their homework. Had we waited just a few short weeks to do the assessment NHL would have qualified for services. So more time went by. After a few months (almost a year into PT) I raised my voice more. I expressed my concern about the initial evaluation and was able to get another one done. This time NHL "failed" with flying colors. Yes, I was thrilled about that because my child could finally get the assistance he needed.

My goal was always to push hard and be able to dissolve NHL’s IEP before kindergarten. My wish was realized in January when we met with the district and NHL’s providers at the time. He did not qualify for an IEP, but would still receive OT and PT services in kindergarten.I completely value PT for helping him to walk, run, jump and keep up with his peers most of the time. PT has also given him strength to keep up with other daily activities. OT has been a major worry of mine. NHL’s wrists/hands get tired quickly. He has difficulty writing for long periods of time. Going into kindergarten where the demands would increase in this area had me quite worried last winter. Thanks to that and me being a BIG advocate, NHL was allowed to participate in a summer enrichment program. It was basically a half day camp that worked a lot with PT and OT skills. The problem – the OT that worked with him focused on other things rather than fine motor. I was aware of this and worked hard on items with him all summer. Coloring, play dough, bead stringing, cutting….all items that we did to keep up his skills.

To my horror NHL’s services did not begin for weeks once the school year began. He went without services for well over a month. OT in particular was very late and started in mid October. NHL loves to learn and is anxious to read and write. He does not like that his writing is not like others (read adults mainly). This frustration may hold him back and has been something I keep telling the OT. To make a long story short I just found out that his current therapist may be moved to another school in January.


I was so upset I could not talk. We FINALLY just got things rolling and she may be gone? It takes time for a child to build a trust with a new adult and really take off. NHL is starting to do that now and it may be gone. When I mentioned it to NHL’s teacher she was floored. It was news to her. Now I sit here wondering what to do. I almost feel like I have little power because my child does not have an IEP. Who knew that that formal piece of paper had so much power?

I may be making some phone calls to higher powers that provide the services for our district. I want to know why they would sthey kneeone working with children in a school if they knew she would be leaving in January. They had to know this since the other school is reopening and some of the children will be going back to their home school. This would and should have been avoided and I am angry. My child’s success is in jeopardy and I know it is not the fault of the provider, but is 110% her provider and the district.


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  • sheila says:

    That realllly sucks. Hope it all works out well for you. And him. I’ll be thinkin of ya!

  • That just stinks! I’m so sorry this is happening. Hopefully she will stay. We are slowly going broke providing EB with OT, but it’s at a private practice. He can’t even get an IEP because they don’t recognize sensory issues as being serious enough to warrant one. Par for the course around here. In any case, I hope you get some answers soon.