It’s already that time of year again. 

Brian’s case manager recently reached out to remind me that his annual Individualized Educational Plan (IEP) meeting is coming up. This will mark our 12th IEP meeting , with just 6 more to go. It’s hard to believe that Brian is already this far along with his formal education. In the blink of an eye, he has gone from 3 years old to almost 15 years old- when exactly did THAT happen? I shudder to think when the public school formally discharges Brian as their educational responsibility at 21 years old. This looms in the not too distant future, but I will not think about that any further today. Meanwhile, back in the present moment..

IEP meetings always cause me to experience a certain amount of angst, even after all of these years. Walking into a situation where the ratio of school personnel to parents is often 6:1, can certainly be intimidating, even under the friendliest of circumstances. I automatically have my guard up as I am carefully listening to the discussions about my son’s performance, concerns, and recommendations. I also find that I need to remind the group periodically that I am indeed a valuable member of the educational team and know my son better than anyone else  in the room. 😊👍🏻

The IEP meeting is the stage where parents give their best advocacy performance on behalf of their children to ensure that their educational needs will be properly met. It’s unfair that we sometimes have to go through so much trouble, time, (and sometimes legal expense in certain situations) to make this happen, but our kids are counting on us in this arena, as they do for so many other things that they need. Like other special needs families, we have had our share of ups and downs during this annual process over the years. 

Our initial IEP experience was very unsatisfactory and resulted in us moving to an area where there were more potential options for Brian within 30 minutes of our  new home. Since that time, Brian has been in 3 different schools, each with its pros and cons- there is certainly no perfect program. Brian’s transition from one program to the next was generally at the right time, based on: his particular needs, the experience and willingness of the staff, and what the school could offer. Most of our disagreements with the school district pertained to ancillary services ( like speech and OT), where they tried to reduce sessions, which is of course inappropriate for a student like Brian and his level of functioning in these areas. It took outside  professional evaluations, clogging up the Director of Special Services fax, and multiple emails/ phone calls to make my point, but we ultimately won those battles. I had an idea after those experiences what it must be like to be a trial attorney- research, fact presentation, documentation, and defense- it’s definitely not for the faint-hearted!

Experience has also taught me to pick my battles during an IEP meeting- how important is something? What’s an absolute deal-breaker? What will it mean next year, 5 years from now? That line of thinking has come with time and practice. My business background has also taught me the importance of professional negotiation. No one likes to walk away from the table without something in hand. Everyone likes to feel that they have “won” something. School districts and families are no different in this regard. Thankfully, persistence  and patience have also payed off in this area for those items that were non-negotiable for Brian, at least so far, but you just never know when things will change. It’s truly one IEP meeting at a time..

Quite frankly, I would love to skip the formalities of the IEP meeting altogether and just ask the most important questions: 

1. How WILLING are you to learn how to help my son? 

2. Will you take my advice and accept my suggestions? Will you go even further and implement these strategies?

3. Will you please communicate with me on regular basis (that is mutually determined) so that there are no surprises on either end? By the way, one paragraph, once a week, doesn’t count.

4. Will you please be honest with me at all times and tell me the good, bad, and the ugly? I don’t want to find out 6 months after the fact that there have been problems. I would love to hear about successes as much as the challenges.

5. Will you please  teach me so that I can teach my son?  I welcome your suggestions and want to follow through at home with what is taught at school.

Simply put, I Expect Performance (I.E.P.) from the school staff and district when Brian is entrusted to their educational care. As a former Special educator, I understand that they have a very difficult assignment. Teaching our kids does indeed take very special and skilled individuals who are not given a manual in advance. Teachers have to be flexible, creative, and patient- it’s one of the hardest jobs ever! I will support our school personnel one thousand percent, but I also expect their best performance in return.  If that is not possible, either the staff member (s) or the placement needs to go, plain and simple. Our kids deserve the opportunity to learn, just like everyone else!

On a lighter note, here are some things I like to do before, during, and after IEP meetings that have been helpful over the years (especially for those families just starting out):

1 . Discuss/Submit my own goals to Brian’s teacher and therapists before the meeting.

2. Request a copy of the proposed IEP prior to the meeting for review- if not available, I will wait until it is, read it carefully, THEN attend the IEP meeting.

3. I write down any questions/concerns in advance of the IEP meeting. 

4. I usually bring a snack to share ( ie, Dunkin Donut munchkins) as a tasty icebreaker to the meeting. 

5. I send thank you emails post-meeting for everyone’s participation and as a reminder of what was agreed upon.

You are to be commended if you have read this far on today’s blog. Thank you for following along! I wish you only the best outcome at your child’s IEP meeting. Our kids are worthy of a performance-based education, no matter where they go to school, nothing less is acceptable!

Until we meet again- many blessings on you and yours! 😊👍🏻

Brian’s School Picture 2017 ❤️

One of the greatest joys EVER in Brian’s life is taking a shower. If there  was a contest held for the longest shower ever taken, he would win, hands down!  All of us know how refreshing it is to take one, but Brian takes this activity of daily living to a deeper and more meaningful level. He is genuinely happy,  squealing with delight as the warm water from the shower head and shampoo massages his scalp and simultaneously adores the loofah on his skin with either a grapefruit or coconut body wash. Removing Brian from this aquatic paradise always requires an emphatic assurance that he will soon return to his second home.

Can you recall the last time when you felt that child-like joy over something so simple? I must confess that I can’t remember, it’s been that long!  This winter has been wearisome, with its perpetual precipitation, cold temperatures, and constant illnesses. Springtime continues to elude us all, but I heard a rumor that it will return sometime soon. Lots of homebound days does not make for joyful families, especially when our kids ( and we parents!) need their routines. Off routine often means difficult behaviors, frustration for all, and the inclination to run away sometimes. I know I have certainly felt this way.

Since running away from home is not an option, I am on an eternal quest to find ways to be content, and joyful (at least a good portion of the time), especially when difficult circumstances want to rob me of those things. Please don’t get me wrong- it’s impossible for anyone to be happy 100%of the time, but I do believe there are ways to live “above the hardships” that are a constant part of our daily reality, as much as the joys are a part too. I must make the effort to look for those moments of joy and make them my own, and Brian will gladly show me the way if I am willing.

I have concluded that Brian’s severe disabilities protect him from ever hating anyone, becoming jaded, or being unkind- the ideal qualities of a joyful person! It is simply  not in his DNA. My husband jokes that Brian will never do “25 years in the Pen”. He is sweet, very trusting, and  a loving young man, and always will be. And of course he also has behaviors just  like everyone else. We worry of anyone ever taking advantage of him in any way, just like other families do. These concerns always lie just beneath the surface and are lifelong. But who knew there would actually be “advantages” to being disabled, and they just happen to be those particular qualities that all parents  would want for their children. Our kids just happen to have these gifts naturally and are Ambassadors of Joy to others in each of their own unique ways.

Brian’s other expressions/moments of joy include:

 His bear hugs (like you’re his best friend that he hasn’t seen in 100 years!❤️)

His  friendly waves to everyone, everywhere! (he often demands a return wave 🤣)

His love for chocolate pudding ( Jello is responsible for creating these infectious smiles 😊)

Storybook Time before bed- we are now up to 6 books before bed- Brian has his favorites for sure! He has loved being read to since he was only months old. It’s a bedtime ritual that we have  treasured for years. Brian loves to snuggle close while reading and is just delighted, like it’s the first time that he has ever heard these stories- trust me- it’s not! 🤣🤣

Music, Music, Music! – Anytime, Anywhere, from Classical to Classic Rock, Brian loves music much, always has, though we were stuck on Toddler Tunes for quite a few years! I think Music in particular speaks to his heart and soul in ways that we don’t fully understand, with a joy that is palpable!

Water World- Brian’s love for water extends well beyond the shower at home. He loves hotel showers too, swimming pools, indoor or outdoor, and the ocean. Brian was afraid of the ocean when he was very little, but now, he communes with the waves in a such special way that I believe this Happy Place makes him the most joyful of all. Others have observed the same and have often brought it to our attention. 

Just writing about these things encourages me to be joyful and is a  reminder of how our minds can be “trained”, like a muscle, to focus on the good.  Joy, like happiness, is also a choice, like so many things in life. For years, I focused a lot  on the “negatives” as they pertained to Brian’s disabilities, (especially in the early years) mostly out of grief and fear. While it’s perfectly natural to react this way to a major life-changing event, the key is to acknowledge, but not to remain in the grief for too long. If my grief had the ability to reverse the permanency of Brian’s challenges, I certainly would continue, but since that is not the case,  I can’t afford to make myself sick. I would then be of no use to Brian, my husband, or myself. So, I try to continue to acknowledge the fear or grief, “feel the feelings” for just a spell,( we are only human after all!), then make a conscious decision to move on.  Life is truly too short not to- this becomes even more relevant as we become older along with our kids.

Our joy as special needs parents is certainly not limited to just our children. We sometimes forget that we were (and still are) unique individuals with our own interests, hobbies, etc. BEFORE we became parents.  While it’s more difficult to make the time for ourselves, we must somehow carve out some time and engage in those pursuits that also bring us joy. I am working on that myself and have very recently rediscovered my love for playing  a portable keyboard, (just some very basic tunes/scales and singing along). It’s amazing how freeing singing can be, by the way, and can help you forget about things that are out of your control…

So, what brings you joy? What will you choose? How does your special son or daughter express their own joy?  I wish us all many joyful returns, especially during those difficult times  when  joy seems to elude us all together, but we choose to seek it out anyway.

Thank you for reading- until we meet again, many blessings on you and yours!

❤️😊👍🏻