April 2008


Tobey has passed the state math test!  To some, that means nothing.  To others, it is “no big deal.”  In my house, it is monumental.  You see, there is one deception that Tobey and I have faced since the day that he entered this world.  That is the assumption that a HIGH percentage of the population think that physically challenged kids MUST be mentally challenged as well.  SInce he is in a wheelchair, he must be completely inept in his brain as well.  Oh my you should just hear some of the comments that I have had over the past 11 years. 

“He doesn’t look retarded?”

“He is in a REGULAR class?”

“He does so well for someone like that…”

Yes, people have actually said these things and many more to me…When he was a baby, I was heartbroken and would just spend the rest of the day hurt that someone could possibly think that about my child.  The next phase that I went through was the “education” one.  I felt that it was my duty to educate people about spina bifida and other kids just like Tobey.   However, I am sad to say, that you get REALLY tired of educating people.  While I will still do it on occassion, I do not do it nearly as much as I probably should.  I have moved on to the “ignore the idiots” phase.  I just do not have the time and energy to invest in people who say such ignorant things to people that they have never even met or spoken to.  

As the years have progressed, we have all dealt with this and have done our best to move on and encourage Tobey to be the smart, creative, loving and caring person that he is.  With all that Tobey has faced/dealt with, he has taken so much on.  His anxiety has skyrocketed.  While I do not blame his stress problems solely on the comments that we hear, I have to say that they do not one thing to help.  He is on meds to help him not be sad all the time, and he is such an anxious guy. 

This really rears it’s head when it comes to tests.  He could have an A in a class and KNOW every bit of the material.  However, he gets the test and FREEZES up and forgets everything.  The state tests are the worst as he knows just how important they are and that makes him all the more nervous.  He failed the math test in 3rd and again in 4th.  I was sure that he would do the same this year as this is the year where the stakes are the highest.  You see, if he does not pass both the reading and math tests, he does not go on to 6th grade.  We did everything that we could to prep him for this test.  He knew the material.  He was ready.  Now, the only question was:  Did he believe enough in himself to get the job done?  We all hoped and prayed.  I will be darned if that boy SHOWED US!  He passed!!!  WooHoo!  No summer school for Tobey and LOOK OUT junior high because he is on his way and cannot wait!

Congrats to my brilliant boy! 

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Today should have been a typical morning. Well, honestly, our mornings are not really that typical. The fact that we have 8 kids–6 which go to school–make things hectic. Every June I am SOOO ready for summer, since the morning chaos can get to you. Then again, come September, I’m begging for the schools to take them back!

But I digress. Mornings are getting outfits together, making breakfasts, and doing all of the other stuff. Raif is a little more involved, as he has to get fiber (to help with *that* issue) and vitamins and such, all mixed into a bowl of cereal because if he even saw any of it, he’d get so worked up he’d gag and vomit. That on top of brushing hair, making sure we didn’t forget a permission slip, and looking for that stray shoe which was where it was supposed to be last night but somehow got lost between midnight and 7 a.m.

There are the occasional “issues.” Such as Monty *has* to be the first one ready. There is no race, but he has to or else the world is not right and he will be off all day. Paige has to make sure the dog is there, because…well, who knows. Ah, but those are the SN quirks, the mild spectrum stuff that is an annoyance but can be dealt with.

Every morning, we rush around. But, despite the madness, we manage to do it. Some days are a little easier than others. There are some hard days. Still, we do all right.

Today, however, the world caved in, all because of….Dora the Explorer.

The younger kids got up a bit earlier than the older ones, and they happily switched on the television to watch that cute Hispanic tot with the monkey as she consults her backpack and goes on adventures. No one realized that Raif hadn’t gotten up yet..until he came into the living room. He is not used to watching Dora. Mind you, he likes Dora. He *loves* Dora, but not first thing in the morning. That’s Mickey Mouse Clubhouse time.

And so the war began. Raif screamed and cried, and started to hit. My youngest three are all girls, and they scream like it. You’d think they were being murdered for as loud as they can squeal. So, as Raif changed the channel, the girls screamed, the other kids yelled, Raif didn’t like the added noise. There was hitting and pinching and some hair-pulling. Jim and I quickly swooped in to break it up.

Now, I have to admit, I didn’t turn the channel right away. I mean, there has to come a time where Raif understands that other people have choices too, and you have to give and take. Maybe today was not the right day, but I decided to hold to our guns and not change the channel. So we had 10 minutes of crying and ranting and general upset before I gave in. The kids were upset, I was upset, and even though Raif got his way he was upset.

So, here I sit, wondering…did I do the right thing? We all know Raif has his routines, and this was one of them. I probably shouldn’t have just sprung a change on him without warning and expected him to deal with it. But, doesn’t life do that to us? Isn’t that something he has to be prepared for? On the other hand, my kids know Raif’s issues. Heck, they have their own issues. Shouldn’t they understand that this was his routine, especially considering they watch Dora several times throughout the day, not just in the morning?

Whatever the case, tomorrow Mickey will be on. One day was enough. I’ll take the “regular” chaos over the special-needs kind.

And June is just 6 weeks away.

I was recently pointed to a blog by one of the other contributors to this blog. It’s a blog by a father of many, who recently lost their autistic child. I think any parent can relate to how difficult that is, but particularly those of us who have special needs children. If you can, please send this family your positive thoughts and prayers. And if you are so inclined, you can read their ongoing story: HERE.

Yes…My Taylar seems to have caught a nice batch of nits from someone at school.  The nurse decided to phone me, during a very important state test, to inform me that Taylar was itching and that she had many nits in her hair.  The kids came home and were just besides themselves.  Tobey was very angry that he had to had his head washed because of Taylar and Taylar was obsessed with the fact that lice are bugs and she had bugs in her hair.  I kept trying to explain to her that she had no bugs as all they could find were the eggs, but that was not working.  She had convinced herself, as Taylar often does, that there was bugs in her hair and she was not going to let that go.  On and on she went.  See, PDD does not allow Taylar to give things up very easily and we all end up wanting to pull our hair out till it passes and something else occupies her thoughts….So, even now, she is walking throughout the house saying that ‘bugs in your head itch.”  I hope tomorrow finds a new obsession…

Little side note:  As I was combing her hair out, I noticed that all of the “nits” just flaked out of her head.  Ummm, nits/lice do not do that.  They stick to the hair follicle.  So, now I am really wondering.  After all of the linen washing, head scrubbing, and torture to all 5 kids, is this just a bad case of dandruff?  All of my kids tend to have very dry scalps and get dandruff/cradle cap from time to time.  I KNOW lice.  I taught PK for 6 years and saw plenty of it.  This was not lice.  I guess no harm was done…I will be sure to inform the nurse tomorrow…

For those of you who don’t know, I have four cousins with Fragile X. The oldest, James, passed away suddenly on April 2 at the age of 52. There was no funeral, no obituary, he just faded quietly into everyone’s memory.

The story is told that on the day my unmarried teenage mother brought me home from the hospital, James, then 19, scooped me out of my bassinet without a second thought. My Aunt Ginny nearly had a heart attack on the spot. All James could say was “she’s crying”. From that moment on, he was my friend and protector. History repeated itself with each one of my children. I couldn’t wait for them to meet the guys, but I especially couldn’t wait to see the look of joy on James’s face as he held yet another newborn or showed my preschooler a new litter of kittens. His love of children was so pure and uncomplicated. His views weren’t contaminated by the world. He never said “is this the last one?” or “you have too many kids”. He loved each of my children simply because they were children. He loved my adopted children as much as he loved my bio kids.

My aunt raised him at a time in which families were encourged to institutionalize their special needs kiddos. She chose not to.

James rarely left the house he was born in. When hurricane Rita threatened the Texas coast, we evacuated the entire family to our small farm house. It was three days of fun for everyone. James’s biggest thrill, though, was in meeting my husband (then my fiance). Eddie had come in from being on the road for over a week and just need some rest. James wanted to see the inside of Eddie’s big rig. He loved trucks. Eddie told him if he would let him get a few hours of sleep (in the truck) then he would take James for a ride. James said ok and ran and got a lawn chair. He sat and watched Eddie’s truck for four hours. Anytime I approached him to try to get him to come inside he put his finger to his lips and whispered “shhhh, Eddie’s sleeping”. Since that trip, every time I visited the guys, James’s first words were “where’s Eddie”. I guess I lost my place as his favorite person. My husband still beams when I tell that story.

The last time I talked to James was shortly after Aunt Ginny’s death in late January. He met me at the car and said sadly “mom died”. Then a huge smile crossed his face and he said “where’s Eddie”.

Two days after James died, I was notified that I had been awarded “Outstanding Parent of the Year” for my work in advocating for blind and visually impaired children. I was asked what my motivation was. I have worked with special needs kids since I was in Jr High. I attribute that to James, David, Chris, and Dee Don.

When I was pregnant with Kaelin, the doctor told me she was at an increased risk for Down’s Syndrome. I can remember sitting at my Aunt Ginny’s table crying. I looked at her and asked “how am I going to raise a special needs child?” She looked at me and laughed and said “the same way you would have raised a normal one”. Turns out, Kae didn’t have Down’s but she did have epilepsy and a myriad of other health issues. Then Ben and Logan were born with Retinoschisis. Then we adopted three more with special needs.

I’ve heard alot of people comment on the “purpose” special needs children. James didn’t invent a cure to cancer or establish world peace, but his life served a much higher purpose. He taught me the meaning of pure, wholehearted, unconditional love. It was a lesson that has been passed on to many through me and everyone else he came in contact with.

James’s purpose in this world was to love and to teach others to love not only their fellow man, but themselves as well. Aunt Ginny and I were talking just before her death and the topic of the boys came up. I told her how much I admired her for the way she raised them. She smiled at me and said “I was lucky, my boys never quit loving me. I have always been the center of their universe. Other moms have to give that up as their kids get older. I didn’t. My boys’ bodies may have grown, but their innocence stayed intact.”

So to my dear James… I love you, I miss you and for the last time EDDIE’S AT WORK. Rest in peace my friend. You will never be forgotten.

Since Angelbaby has hydrocephalus, she also has a VP shunt. It has only failed two times. It does make all the ‘normal’ stuff a little odd though. Here is an example:

All day yesterday, Princess was complaining of an ear ache. I assumed her cold had caused an ear infection and was planning to take her to the doctor on Monday. In the meantime, she had a fever and got showered with attention as all sick children usually do. Later in the day, Angelbaby started fussing and complaining of an ear ache. Same ear as Princess. Well, at this point I thought that she was just being 3 and wanting extra attention for the same thing that her sister had. We gave her a little extra attention and went on about our day. By bedtime, Angelbaby was crying fiercely, holding her ear, screaming and kicking, and her left eye lid was drooping. This is where the wondering about the shunt comes in. I thought that A) Her ear really does hurt. Maybe her ear tubes became dislodged and she has a horrible ear infection or B) Her shunt is malfunctioning and the only way she has seen recently to address pain was to complain about an ear ache or C) I am going to brush this off as nothing and she won’t wake up in the morning because I let it go on too long. Now C is the most irrational thought so it gets dismissed. A & B move to the top of the list of what is wrong. I decide that if she can sleep, it is not that big of a problem and if she wakes up screaming in pain, then I will take her to the ER to find out what is wrong.

We all slept, somewhat peacefully, through the night. When she woke up, she was in a good mood and ready for the day. I checked her ear and there was a chunk of earwax and lots of yucky looking fluid. Had I seen this on any of the other kids, I would have lamented about how awful it was that their ear must hurt so bad and vow to rush them to the doctor first thing. Angelbaby though makes me think differently. I was suddenly relieved. I knew for sure it was not a shunt malfunction. I knew I had to take Princess to the doctor but seriously debated about the necessity of taking Angelbaby to the doctor as well. I knew her ear tubes were now working and the fluid would drain like it is supposed to. Why would the doctor need to see that? Well, since Princess had to see the doctor and most likely Angelbaby would be there in the office with us, I sprung for the extra $20 co-pay and had her ear checked out by the doctor as well. Princess came home with oral antibiotics for her ear infection and Angelbaby came home with antibiotic drops for her ear infection.

Back to normal. Wiping snotty noses, administering antibiotics, and cleaning up Buckaroo poo. But Buckaroo is a story for another day.

My name is JennP.  I am a mom to 5 GREAT kiddos.  1 set of triplets (Tobey, Tylor, & Taylar) and 1 set of twins (Brennyn & Baylee).  My triplets are 11.5 years old, and my twins are 16 mos. old.  Among my 5 children, I have 2 that are considered “special needs.”  Life can get quite interesting with several kiddos and special needs all thrown in together!  Tobey was born with myelomeningocele and hydrocephalus.  He has endured 18 surgeries, hundreds of procedures, and thousands of doctors appointments over the past 11 years.  Taylar was diagnosed with PDD-NOS at the age of 5.  That falls under the autism spectrum.  Needless to say , we never have a dull moment here in our house!  I look forward to sharing all of the ups and downs of life with many kiddos and SN.

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