This Time With Real Words, Please

We go to school, spend all this time learning to spell only to grow up and have to start over learning a bunch of acronyms, by teachers nonetheless. This I found very ironic about raising a child with special needs.

Justice was only about two months old when I once again realized what a great country we live in here in the USA. I haven’t traveled outside of the United States much. I’m sure other countries are wonderful but I feel it would be shameful to take for granted the luxuries we are afforded here in America including all those we have condensed down to three and four letter phases.

"On Monday, we’ll gather your team and have an IFSP for Justice. Now it won’t be an IEP because she’s not old enough but at the IFSP, we’ll have the MDT do an assessment. The MDT will be the OT, PT, SLP, D/HH, EISC and an ELT. Now you do know that your child is entitled to a FAPE don’t you? Of course, you would. Feel free at anytime to get an IEE but you will have to pay for that yourself. Everyone there will be trying to ILCD, that’s why we’re here so don’t be nervous. I’m sure Justice will qualify under OHI if not for her DD, D/HH or MD. So really, an IEP or an IFSP and a MDT are nothing to fret about because JGB is bound to qualify ASAP and will be MMP even without an ESY. So Christy, before we get started what’s your family’s goals? What does your family need? Your laundry done? Oh no, sorry, nothing we can do about that."

IFSP (Individualized Family Service Plan for ages 0-3) and IEP (Individualized Education Plan for ages 3 +) can be overwhelming especially at first. Basically, what happens with babies is a referral is made to the public school system for the child to receive free services like OT (Occupational therapy), PT (Physical therapy), D/HH (Deaf/Hard of Hearing Education) or SLP (Speech Language Pathology). The referral can come from anyone, a doctor, nurse, parent or even a neighbor can call. The next step is for a service coordinator (SC) to contact the parents of the child and they only have a limited number of days by law to do this so things move pretty quickly after the referral is made. The SC then sets up a time to have a MDT (Multi-Disciplinary Team) assess your child and see what services if any they would qualify for. In our case, the MDT was done the same time as the IFSP, which just made for one long meeting. Next, therapists said what goals he or she had, how often they planned to come to our house and provide services and asked if I had anything to add.

There are some pros and cons to the meeting. In order to qualify, the therapist does have to tell you what’s “wrong” with your child. This can be hard to hear over and over again as 12 or so people in the room seem to pick apart your baby. You do have to really remind yourself it’s not personal and they are just doing their job so in the end they will be able to help your child. The good thing is, by law, they have to tell you the positive things about your child. There were certain people at the meetings I could have just got up and hugged.

As time went on, I believe I became relatively good at IFSP/IEPs. In the beginning, I didn’t have any goals aside from “Can anyone figure out how I can get some of this laundry done?” but boy did have them later. I learned the law and the things Justice was entitled to ensure her education. I spread the word to other parents and tried to help educate them. I would show up for IFSP and IEP with a whole list of goals for every therapist and teacher Justice had. I did not make their jobs any easier. I was tough on them but hopefully they too understood it wasn’t personal. I did what I had to do so Justice would have a chance at life. Heaven knows her doctors have it just as hard if not harder. However, these teachers and therapist from her early years NEVER treated Justice as if she was any different from any other child. They knew my expectation was for her to have a normal life. I expected her to walk, talk, eat orally, read, write, do math, ride a bike, go to college and so on and they always reached for those same goals not matter how far away they seemed.

Today, JGB is well on her way at becoming a BYL with tons of BFFs all because her OT, PT, DE, SLP, SC and many many more didn’t say IDK but said we’ll try, ASAP!