Anticipation

Brady is getting steadier and more confident in his walking. Look how effortlessly he cruises around with toys in hand...


He can also stand still in the middle of the room...


We love that Brady is confident and now prefers to walk everywhere. The only problem is that he has to concentrate solely on walking or will take a nasty fall which is a whole lot different when you are in the parking lot at Target versus at home on the cushy carpet! At our IEP meeting we noticed that the floors were vinyl or thin, commercial-grade carpet with no padding. It's hard to imagine how things will go when one of us isn't hovering and ready to catch Brady. His defensive reflexes have improved tremendously, but it's the unexpected stuff like tripping on something he hasn't anticipated or attempting to lean on kids who might move out of the way at the last second that is causing most of Brady's falls.

In our IEP we agreed to purchase a helmet for Brady to use while on the playground. I guess we will just see how things go while he is indoors at school. He has been known to fall off chairs unexpectedly so we have been practicing for school...

I have never been so excited and nervous about something as I am about Brady going to school. I can't wait to meet his teacher and I am thrilled that Troy will get a break for a few hours each day. I guess the hard part for me is that I can't ask Brady about his day. Do you think they will let me peek through the windows for the first few weeks? Hmmm... didn't think so.

IEP Is Done!

Troy has been diligently working for months on all the necessary steps to put Brady's Individualized Education Plan in place. Brady was evaluated by the school district on Tuesday, we had our big meeting on Thursday and tah-dah we are done! There were so many steps that had to take place prior to this meeting, we are relieved the IEP is now in place and that we finally know the where and when Brady will go to school.




We had heard many horror stories about this process (parents having to fight the district, sue the district, etc., etc. in order for their child to get an appropriate education). I even attended a one-on-one coaching session to learn how to better advocate for Brady during this process. Thankfully, the process went more smoothly than we had anticipated. Our local district was very efficient and had the school psychologist, PT, OT, speech therapist and a pre-school teacher evaluate Brady simultaneously. The same group then met with us two days later and had his entire education plan loaded onto their laptops in time for our meeting. Troy and I were up until 1:00 am that morning creating our own list of everything we wanted for the Bubs and those school people delivered everything on that list and a little bit more. No fighting or pushing for services required.



Because Brady fell into the severely delayed category in most areas of development our IEP team suggested he attend a different pre-school program which has a 2:1 child to staff ratio rather than the typical 5:1 ratio. Additionally, Brady will attend four hours per day, four days a week rather than the typical 2.25 hours. Obviously this arrangement has calmed many of our fears regarding Brady's personal safety and communication abilities. We were a little disappointed that he will attend a school nine miles away rather than the elementary school down the street, but we have the choice to move him to the standard special ed. preschool at any time during the school year. That was the most surprising part of this process - that we actually had choices.



The three of us will go to school together on August 11th to meet Brady's teacher and give her final instructions regarding his seizures and feeding instructions. Then our little Bubs will start school on August 12th! I had just started fretting about finding a backpack and lunchbox to replace Brady's diaper bag and look at the surprise I got in the mail the other day...

My dear friend Michelle sent this "just because" and I hadn't even told her about Brady attending pre-school. Isn't it amazing how the people close to you are just on the same wavelength sometimes? Thanks, Michelle!

By the way, Brady was determined to be only moderately delayed in gross motor skills and social development. I'm positive this is due to Coach Farnsworth's daily sports training and the fact that Brady dazzled those people with his smile!

p.s. I found and excellent blog regarding disability advocacy for anyone out there who might want tips in effectively advocating during meetings such as an IEP. Enjoy!

Mystery Me

Okay, so several Internet friends thought that was me in the pool with Brady and I am realizing that I NEVER post photos of myself on the blog! Oh, to be in my early twenties and look like Brady's cute, tan swimming teacher :-)

I hate having my picture taken. I keep saying I will be in more pictures when I lose weight, etc, etc. It's been 3 years since this whole ridiculous picture stuff started so I just plain need to get over it. The most recent picture I could find was from Halloween - here I am.

Swimming Lessons

After my last post I thought it best to show some fun stuff going on around here. How about a picture-intensive post for once?

Our little fish is LOVING special needs swimming lessons. I wish I had zoomed in closer because he has a huge grin in most of these pictures.

Entertaining the big boys (or likely the other way around). A couple of the typical kids who go to the pool with their special needs siblings have adopted Brady. One always asks his mom "where is my baby?" when they get to the pool. These boys are particularly tolerant and understanding of Brady's less typical behavior - they are just amazing kids.

Playing Toss the Ring with the big boys. "Can we put it on his head and see if he can find it?" He he.

Showing off more sticking-out-of-tongue skills...

And because I just can't stop myself from typing lengthy paragraphs, I have to tell the cutest story. One older boy with Down Syndrome was struggling to get his brand new goggles out of their packaging. Troy offered to help and was able to break open the plastic (I heard they now make special scissors just for this...must find some). Later I overheard this boy telling his friend "Did you see that muscle guy? He is so strong. Yeah, he's a GREAT guy." A lengthy conversation ensued regarding exactly how great this guy is and exactly how strong his muscles are. Needless to say, Troy and "the smiley one who always wears sunglasses" are very popular at the pool!

In THAT Place

So... yeah, I had to reset the seizure counter yesterday. This is a frustrating setback. Brady had a low grade fever yesterday and we are hopeful that this was the cause of his seizure and not some other underlying issue. When we last met with our neurologist he explained that the odds of a seizure medication working (and by working I mean getting rid of ALL seizures) go down with each medication failure. If one medicine doesn't work there is still a strong chance that the second will. But if two meds fail, the chances of success diminish substantially. Three or four failures and one may be facing Intractable Epilepsy. Thankfully, Brady is on a medium-ish dose of Keppra so we could increase the dose several times before we have to switch to or add another med.

I thought I was used to these episodes and would just roll with it. But the truth is that the last two months without seizures have been life changing and I am terrified that might change. We have gone out on dates. I have been better able to focus on work while I am at work. Brady hasn't missed any therapy appointments, play dates or swimming lessons. We have all routinely slept through the night. I have even started to shed some of the 50 extra pounds that have piled on (my chosen method of stress relief) since Brady's birth. I am trying to learn from all of this and be able to take care of myself better whether or not stressful circumstances are present in our life.

So this is me panicking and projecting one five-minute episode yesterday afternoon into the indefinite future. I have been reading a book on the process of grief that every parent of special needs children goes through. This panic is normal. It's part of the process and I am learning to better recognize this and not get STUCK in this one particular place. I have also learned it's normal to jump back to different phases of the grief process even though I have already reached (or thought I had reached) the phase of acceptance. I really should have read this book, um, TWO YEARS AGO!

The book is out of print and was written in the '80's . The language is a bit out of date (ahem, somewhat un-PC) but the message is timeless. I would recommend it to any parent of children with special needs. Thanks to the Foundation for Blind Children for introducing us to the book through their After the Tears Program. And thanks to Troy for bringing me a copy after I couldn't make it to the program last week. I am gearing up for the meeting this Friday because I always ugly cry in front of those wonderful people!