Sunday, April 1, 2012


Spring break is over, and summer is around the corner, who wants to think about NEXT school year? If you do have a child with Special Needs, it is a good idea to start making plans for the next school year before School administration shuts down for the summer.  This is the prime time to schedule your IEP meeting or start initiating your communication with your school district.

This is especially important, if you know the school district and you might not have the same plan in mind for your child. The earlier you can start the discussions, and explore your options, the better.

Our son Jacob living with Mitochondrial Disease, having extremely low immune system, every cold means a hospitalization, and 4 (!) different seizure action plans in place - everything would point to Jacob being homeschooled. Homeschooling is the “most restricted environment” for a child. Each child has the right by law to “the least restricted environment”. This means that the school district should always look into options allowing your child to interact with peers wherever possible.

In our case, we had already ventured out in the school world when it was time to get involved with the school district. Jacob was already attending the preschool Bal Swan ( when it was time to start discussing public preschool for Jacob. Bal Swan had proven that they could keep Jacob medically safe in his “least restricted environment”. Jacob became the first exception on preschool level to not attend a public preschool in our school district. The school district agreed that a private preschool with a proven record of keeping Jacob medically safe was the right solution.

I was exhausted after numerous meetings, evaluations, and negotiations, but at the same time satisfied that the school district recognized what was best for Jacob. I remember that I got the final decision during one of Jacob’s numerous hospital stays. I remember thinking that I would never have to deal with the school district again, since I honestly didn’t expect Jacob to live two years later.

Last spring, I realized that the 2-years agreement with the school district was coming to an end. It was time to get back to the negotiation table, and I was happy that I got the chance to do that once again for Jacob.
Jacob had turned five years old, so in the eyes of the school district, Jacob should attend kindergarten. Due to Jacob’s global developmental delays, we were in no hurry for kindergarten. We felt that the best solution for Jacob was to stay another year at Bal Swan.

I experienced a complete disastrous IEP meeting last spring. Our ARC representative who has attended hundreds of IEP meetings was simply “disgusted”. She had not attended such a political IEP meeting in a very long time. The school district was not interested in continuing exploring a private school option. They simply wanted to put Jacob into the regular program for special needs’ children – either at home or in the public school accommodating children with the most severe special needs. They didn’t want to deal with this mom (me), who had another plan for her son. In the end, it was obvious to the school district that they simply couldn’t provide the same solution as Bal Swan. Jacob got to stay at Bal Swan for another year.
Since Bal Swan is a preschool, I knew I would eventually have to look at other schools for Jacob. It was with great delight and relief when Bal Swan announced that they were adding kindergarten for the school year of 2012-2013. That was just in time for Jacob to start kindergarten!

As soon as I found out about the kindergarten program at Bal Swan, I e-mailed the assistant Director of Special Education in Jacob’s school district. I told her the news, and that I wanted Jacob to attend Bal Swan for yet another year.

She scheduled a meeting where we could “feel each other out”. In this meeting, they painted the public school in light colors, suddenly being able to accommodate all of Jacob’s needs. They could “replicate” Bal Swan”, and I could either start attending the public school or reject their option. They were not open to negotiate yet another year of Bal Swan.

I didn’t like their tactics, but I also realize that Jacob can’t stay at a preschool forever. I negotiated to see if they would be open to both Bal Swan and the public school. It would be a year of transition to see if the public school can keep Jacob medically safe or not. I could sense that the school district was willing to meet me half way.

And this is where we have to take a chance. We have to try out the public school to see if Jacob can ever attend a public school or not. We don’t know, and we will never know, if we don’t try. School brings meaning to Jacob’s life. That’s where he makes friendships, and where he is a kid amongst other kids, we need to make this happen for him, if we can.

So, we left the meeting, with a possible solution of doing both Bal Swan and the public school for the next school year. After that meeting, we have visited the public school several times to make sure this would work for Jacob, and what modifications and accommodations we need to ask for. The public school team has visited and observed Jacob at Bal Swan multiple times to get to know Jacob, and see how they can “replicate” his current school environment. This goes for both teachers and therapists. There is collaboration between both schools.

On April 11th, we have the actual IEP meeting. After last year, I know that an IEP meeting can get nasty and emotional. I am bringing a team supporting Jacob including his teacher, his nurse, his ARC representative, and his speech therapist. A team, who is looking out for Jacob’s needs. We know what we’re proposing. We know what is not negotiable. We know what we might be able to negotiate. In the case of Jacob, there is also yet another stakeholder, and that is Jacob’s primary care physician. She is actively involved in Jacob’s school decisions, and she is still saying “no” to public school from November-April. This means that during 6 months, Jacob would only attend Bal Swan. She feels that public school can’t keep Jacob safe during respiratory season. For her this is non-negotiable.

So here is a summary of a few strategies to think about as you plan your child’s IEP:
1. Think through what is the best school solution for your child. This might not be the “easiest” solution for the school district, but what is the best solution for your child? It might not be a question of school placement like for us. It might be a question about equipment, therapy, nursing care, interaction with other children, modifications to the school schedule etc. etc. The list can be long.
2. Bring a team who you know will support your school solution. Don’t go by yourself. If it gets emotional, you know that you have others who can step in. Bringing “neutral” players, e.g. teachers, therapists, help a lot to support your child.
3. Think through your negotiation strategy. What is your best alternative to the negotiated agreement?  What is the other side’s strategy? Ask questions, and feel out the other side before the actual IEP meeting.
4. Always stay on target, remove emotions, be prepared, and be organized. Be polite, but firm. Be assertive. Don’t get aggressive.
5. Provide information about your child. Don’t assume that they understand the needs of your child.
6. Nurture the relationship with the school district. You might not always agree, but you will need them for the long run. Through disagreements, there has always been respect for each other’s perspectives. We are mutual players at the negotiation table.

I am not sure how Jacob’s IEP meeting will go, but I am coming in 100% prepared, ready to advocate for my child. I know in my heart and head that Bal Swan is the best school solution for Jacob. But I also know that Jacob can’t stay at a preschool forever. I am therefore willing to find the best of two worlds. What is the best solution for your child? What could make it better? There is nothing that is too big or too small to ask for. You will never find out if it’s possible, if you don’t ask.

Good luck on providing the best school solution for your child, and then let’s enjoy that summer before it’s time to return to school again!



  1. Wow! this sounds like you are preparing for war! The best of luck for the meeting and hopefully you and Jacob will be happy with the outcome. (-:

  2. Special ed teacher here and it is battle ground unfortunately! I teach in a school just for students with autism and districts frequently want to take kids back. I get upset knowing that what they have to offer for our particular students is not enough, some parents do not know they have a choice and I am not allowed to say that! I used to work in our multiple disability support program in a center. There is a lot involved with working with children that are medically fragile. Good luck with your educational journey!

    1. Hi Carrie, it is great to hear your perspective. I am hoping one day that I can also help other families, since it is so important to know that you are your child's biggest advocate! By being prepared, the school district did agree to our solution! We have had great success with support from the Arc as well!