I don’t watch American Idol generally. Tonight I watched it for a little bit and while all the little stories and successes are wonderful, the last clip on this episode pretty much said it all. As a mother of a special needs child, I live everyday full of hope for my son and know that his future will be bright. But still, worry is part of this game. Tonight a man auditioned and told his story of how he was born with no ears and that as he got older he was able to have surgeries to allow him to hear because he did in fact have ear drums etc. His family waited outside the audition room and his father was weepy as he waited. Every parent wants their child to succeed but this dad was coming from a very different place far deeper than a place of hope for a golden ticket. After the man sang his beautiful song and came out to show his family his ticket, his father was pretty much balling in the background. He said ” I remember when the Doctor said “he won’t speak, he can’t hear he’s not well.”.. “Now I am happy.” I of course lost it at this point because everyone loves a success story but really I’m thrilled as a special needs mommy to see the unbelievable miracle that I was able to see tonight. These kids are amazing and it turns out, they become amazing adults too!

I had a reflective moment today and it was regarding the type of Developmental Pediatrician we went to back when our now 5 year old was only 15 months old, and how if he had been any different than he was, who knows how our path would have unfolded. He was supportive and positive from our very first meeting and I truly believe that he helped shape the course for us because of this outlook. We happen to be optimists so I think that even if he had been a downer, we would have resisted following that lead because of the type of people we are. Having said that though, the early intervention journey is a draining one at times so the more positive and optimistic people you have on your team, the better. As we started meeting therapists and forming our team we made sure to keep people with similar attitudes with us. Now after 3.5 years we have formed an unbelievable team full of supportive and hopeful members who care so completely for our son. His teacher for the past 3 years has done so much more than I will ever be able to thank her for and just today when she had to go to bat for us yet again, she did it without giving it a second thought. As always she got the exact result we wanted. Each therapist we have works so hard every week to help our son progress and they are as excited as we are when they see the results of all of these efforts. We are so beyond lucky to have the team that we have and not a day goes by that we don’t appreciate each and every member!

Go Team!

For the first time since we started our therapy/intervention journey 3.5 years ago, we took a true break. Every holiday break we still continue with therapies so there isn’t regression and to keep the little man on somewhat of a routine. During this holiday break we took the two weeks to just relax and enjoy. We kept one speech therapy appointment because she comes to our house and it was easy enough so he met with her two times and an OT student who used to be his shadow at a typical preschool, came one time to play for an hour. Aside from that our routine went out the window. It was actually kind of nice to just relax at home, go to bed late, sleep in and spend time together. I always joke that I’m “greedy” when it comes to my son because every time I want a milestone to come so badly, by the time it comes, I’m so anxious for another that I recognize that the old goal has been reached but still it’s on to the next. At one time I just wanted him to say “hi” and now I want him to master potty training which by the way,the fact that he hasn’t yet is completely his choice. He just can’t be bothered but knows exactly what he is supposed to do and will do it when he told but doesn’t care enough to initiate it on his own. I have “hi” now though, all the time. No prompt required, if someone says hi to him he says hi back.. it’s the best.. but here I am focused on that potty thing . So over this vacation we have had up’s and down’s because during the entire first week at home, potty training completely regressed. He was loving his free time so much and the fact that for the first time since he was 1.5 years old, he didn’t have to be somewhere at all times. He finally got control of  the bathroom deal again during week two (phew, I thought hubby was going to jump out the window ) and even had some great gains while we were home. He started saying yes and no consistently which again he knows how to say and do everything but it’s getting him to do it on our terms. So overall vaca was a great success. Slight regression and major verbal improvements. I was so excited for this time with the family, with two days left of break I’m starting to get pretty excited to get back into a routine again. Up and down, that’s the way the special needs road goes.

My son is in pretty intensive feeding therapy. He has no problem with textures and there is no rhyme or reason to the choices he makes but basically he is just super picky and mostly unwilling to try new things. Unless of course it’s chocolate, then we can usually persuade him pretty easily to try a taste. Drinking out of a cup is one of our current challenges. He prefers to drink milk out of his toddler cup and won’t drink water or milk out of a regular cup - glass, plastic or otherwise. He will however, drink our pop.Today we were out at Jungle Java and we didn’t bring his cup for milk which means he would usually have to wait until we get home for a drink. All the boys said they were thirsty so we decided to get N a pop to see if he would drink it. Water would have been ideal but we knew better than to try. We ordered a pop and…

We know now more than ever that it’s just him being stubborn about not exploring other drinks in cups. That’s what happens with the smart kids. They out smart their parents!

Ahhh pop out of this big boy cup is the best!

This is a guest post by an inspiring member of “The Special Mommy Club.”

Tulpen’s blog can be found at http://tulpensbadwords.blogspot.com/ It’s SO worth reading!

Owen was around 7 months old when I first tried to feed him. He’d reached the
milestone of holding his head up, so I called up his surgeon and told him I was
going for it.

Gerber Rice Cereal was my choice.

I didn’t expect him to play baby bird and open wide for that spoon. He did open wide. He stuck out his tongue and pushed that spoon away from his mouth like he meant
it.

He meant it.

I called in Early Intervention and went on an online fact finding mission. I backed up and away from food and focused on desensitizing his mouth with brushes and knobby things and chewy things.

I read articles aloud to the Early Intervention Occupational Therapist as she did exactly what I’d learned NOT to do to Owen. She force fed him and tricked him and made him even more afraid of food.

I fired Early Intervention.

That winter, the retching started. The Fundo had bundled his
stomach up so tight so that no food could come up. No air could come up either.
Twenty or so times a day he’d retch, minutes at a time, until I emptied his
stomach of food and air with a giant syringe. A few times a day he’d turn
blue.

I kept up with the brushing, poking and prodding, but gave up on actual food.

At 16 months or so, we met Micki, a Speech Therapist with a
specialty in feeding therapy. After a couple months, she had him taking tastes
of purees. At 18 months, he would eat half a jar a day.

Then his stomach
slipped up into his chest and he stopped doing even that. Surgery put his
travelling tummy back where it belonged, but all the progress he’d made was
erased.

Micki had to start from scratch but would never see their prior
success.

Frequently he would throw his food all over Micki, or me, or all
over the room in general. He shattered plates and bowls and toys.

At Owen’s three year check in with his surgeon, Owen was licking things;
cookies, crackers, chips, chicken wings even, but no biting, chewing and
swallowing. Rusty assured us that 99% of kids like Owen are tube free
by age 5.

Owen’s life had already been lived in the 1% zone, so I
took this to mean we’d have that tube well past his 5th birthday.

Micki gave up on Owen when he was almost 4. She gave us the excuse that insurance wouldn’t pay without progress, but I believe that she knew he was out of her league. She was right.

At four and a half, we met Chris (cue angels singing), and I had a
feeling, as Mommy’s usually do, that she was The
One.

She admitted that Owen’s was one of the more severe cases
that she’d seen. She was confident that she’d get him eating.

She started
from scratch with oral exercises and a reward system that Graham understood and
enjoyed. A behaviorist came to our house to set up a home
plan.

A PLAN. We’d never had one of those
before.

Plans sometimes work.

Within six weeks he was willingly eating purees. Eight weeks and he was eating peanut butter out of the jar. A couple months and he was chowing down Veggie Stix.

She introduced him to every taste and texture. His jaw muscles strengthened. His
swallow improved. He gagged less and less.

I rejoiced over a plate of nachos.

Every week he’d eat more. Actual preferences emerged; tomato sauce, salsa, ketchup
(yes, a culinary theme also emerged), mustard, cheese.

He learned to manage thin liquids without choking, first with a syringe, then sippy cup, straw, and open cup.

Normal meals disappeared from his plate. Chicken nuggets and fries.
Mac & cheese. Lasagna. Grilled cheese and tomato soup.

He ate enough to back off on his tube feedings. He’s learned what hunger feels like, and how to make it go away.

He’s learned what being too full feels like, and how to avoid that too.

He hasn’t had a tube feeding in more than a month.

He’s gained over a pound.

Friday was our last visit with Chris. She had a cake for Owen, balloons for both kids.
Gifts were exchanged.

Tears were shed, especially after she opened this framed picture of Owen:

Owen didn’t understand why we had to hug Chris goodbye, or why Mommy and Chris were crying.

He didn’t understand what a huge accomplishment he’d made.

Like any other kid, he just wanted to get home and play, and eat
more cake.

And like any other kid, he got up the next morning and ate a bowl
of broccoli for breakfast.

Another luxery of special needs (yep I said luxery) is that the preschool bus drives my son home and drops him off at the end of the driveway. It took me a over a year to let him ride the bus and I only have him ride one way but I would be lying if I didn’t say that it is pretty heavenly not having to do the hour drive roundtrip. He gets home at the same time everyday but I always check 5 minutes early in case one of the other kids is out and they are running ahead of schedule.  About two weeks ago the bus driver who is a doll, started having him head to the door when I wasn’t out there waiting for him and now he just walks right to the door while she watches him. I have said a few times to my family that if he ever got all the way to the door I don’t know if he would know what to do.  I mean he knows you knock on a door but that doesn’t mean that he would do it. Today I was sitting on the couch and heard the door slam shut.  I jumped up because it was ten minutes before bus time and I wasn’t expecting anyone else. When I looked in my front hall I saw my two teenagers standing there (ages 3 and 5). My big boy was taking off his backpack etc. and the little one had just let him in the house before I even realized that he was home. Apparently, the little one heard my school boy knocking on the door and let him in while his clueless mommy who will now be watching television on mute, didn’t know a thing about it. I opened the door and waved to the laughing bus driver who was waiting for me to check in. I maintain, ya can’t underestimate these kids, any kids. They sure do grow into teenage toddlers fast!

Today I noticed my son crossing his legs clearly trying to avoid wetting his pants. This really was great because he has not yet mastered potty training completely. He now holds it for hour vs minutes but still he isn’t interested in stopping what he is doing to go or tell someone he has to go thus leading to accidents etc. I was so thrilled he was trying to hold it but I wanted to run him to the bathroom and in my mini tizzy he was caught off guard and dropped his ipad on my toe. Can’t lie, I wanted to cry like a baby. It hurt so much but honestly we had to get out of the house to get to therapy on time so crying had to take a back seat. I was trying not to make a huge deal of it but I was really hurt. I didn’t say much but the next thing I know my baby boy was crying and saying “I’m sorry I’m sorry!” I almost fell over. Pain went right out the window. I was so excited that he expressed empathy without me even telling him that he had hurt me. It was really amazing I can’t say it enough. He really is moving right along. As soon as I told him it was alright and that I was fine and thanks for saying sorry he was fine too. There is an upside to every situation, even a half broken toe .