Musings of a Marfan Mom

June 7, 2011
by marfmom
4 Comments

Goodbyes

May 19th was a pretty momentous day in our household. The Menininho has been receiving speech therapy for 10 months now, at first once a week, then twice a week since February. All along he’s had the same speech therapist. Even when M wasn’t really bonding with anyone, Mark & myself included, he really enjoyed this therapist. In the past couple of months M has begun to refer to him as “Too-Tee” (teacher) and later that changed to the question “Tee-Tah commin?”

The 19th was “Tee-Tah’s” last day; he has since moved away. What made the day momentous, however, was that it was also M’s last day. He has tested out of speech therapy! We had anticipated that he probably wouldn’t meet the Early Start criteria but still have a speech delay, and then Mark & I would decide whether it was enough of a delay to warrant a private therapist, or whether his needs would sufficiently be met at his therapy preschool program. We were pleasantly surprised to learn that at least on the REEL, M tested at age level in both receptive and expressive language! The REEL isn’t the best assessment tool so M probably still has a small delay in expressive language, but it’s small.

Although we’ve had this good news for a couple weeks now, Mark & I are still pinching ourselves. 6 months ago, M was still classified as nonverbal. We thought his goal of learning 20 object words was a big stretch. Now, he probably has 80 words! People have asked me what I think made the difference, and I credit it to a few things.

1) The speech therapist once told me he believes our timing in getting M in for therapy at 16 months played a big role. If we’d waited, it was our therapist’s opinion that M would not have progressed on his own and might well not be verbal now.
2) We have fought for increased services. Initially we were given one hour of speech therapy a week. Within 2 months we’d been able to add 6 hours a week of school, and in January we added an additional hour of speech therapy a week. We supplemented therapy briefly at another hospital out of pocket as well.
3) M had a speech therapist he connected with. Mark & I are so grateful to “Tee-Tah” for going above and beyond with M. It makes a difference when therapists actually care about your child and I really believe the kids can sense that. M is still asking for his therapist, even while we were on vacation.
4) Luck.

There is no guarantee that early intervention will make your child talk; obviously speech delays and autism are more complicated than that. However, NOT getting early intervention can prevent your child from getting back on track. If I could impart something to you, it is this: Go with your instinct. If you feel something is wrong, go looking for answers. Most pediatricians are NOT trained to recognize these kinds of delays. Do not wait until age 2 or 3 (waaaay too many pediatricians advise this). Each state in the USA offers early intervention (the name may differ) and they will do a FREE evaluation of your child. You don’t need a referral from your pediatrician – just look up the office and call. Don’t be afraid to question the level of services, either.

I hope those of you reading this don’t ever need early interventions for your children but if you do, take advantage of the program! I am so glad that we are!

June 6, 2011
by marfmom
0 comments

AbilityPath

3 weeks ago I had the opportunity to participate in a video chat for parents of children with special needs, hosted by AbilityPath. What initially drew me in was hearing that one of the panel of experts was Dr. Heidi Feldman. I am a HUGE fan of the book she co-wrote: A Parent’s Guide to Speech & Language Disorders. I wrote a review of it here shortly after M was diagnosed and I stand by my assertion that portions of it are a valuable read for parents of a child with any special need, not just a speech or language disorder.

AbilityPath is an online community for parents of children with special needs and professionals to connect with and learn from each other. You can create a blog, join groups related to your interest, or browse articles on child development (both typical and non-typical development). Of particular interest to me right now is their toolkit on the IEP process.

Anyway, this video chat was conducted over AbilityPath’s Facebook page, with Dr. Feldman and two parents serving on the panel. Kim is mother to 3 daughters on the autism spectrum, and Pete has a child with other special needs. Participants were able to submit questions for the panel before and during the chat. The panelists had some really valuable insight.

“Life with autism might not be a cake,” Kim said, “but it’s full of petit fours and tapas.” So true! There are many sweet moments, I’m just finding that those moments are different than what I’d expected. Kim also reminded us to refrain from putting our disability-related books on the nightstand, so that we’ll read something else at night. Guilty as charged! I’ve only been reading autism/sensory books recently, except when I take a break to read Baby Led Weaning. It’s important to step outside the “special needs bubble” sometimes. I’m working on that.

Dr. Feldman also offered practical information from a clinician’s point of view. She advised parents to get their children on their state’s DDS system in case they end up needing services as an adult. She also explained the World Health Organization’s international classification of functional disability and health, which has the categories of participation:
1) social interactions
2) aspects of domestic life
3) major life areas: school, getting job
4) being in the community (recreation, religious life, voting, etc.)

What was equally valuable to all this information was the conversations occurring in the chat room affiliated with the program. We parents were trading stories and tips. I learned about an ID bracelet website from one mother, a company that teaches kids with special needs to play piano from another.

It was a refreshing and informative hour well spent.

AbilityPath will be offering other video chats like this in the future. I don’t have a schedule of those now, but when I know I’ll post information here in case any of you are interested in attending one.

* Everything I’ve written is my own opinion. I was invited to participate and enjoyed the webinar enough that I wanted to tell all of you about it!

June 3, 2011
by marfmom
12 Comments

I Can’t Make This Stuff Up

We’re home from the 2 week, 4 city, Family/Friends of the Midwest Tour 2011!

One of the questions I’ve been asked several times already is whether the social story helped prepare M for the flight. For the flight to Ohio, yes, I’d say that it did. Overall both boys did well, as long as Mark was continually entertaining Menininho, until the last 45 minutes or so. Not bad for an all day trip on 3 hours sleep with no nap!

The return flight though? Buckle your seatbelts while I take you for a little ride, folks.

M started stimming before we’d been in the car long. Not a good sign. As soon as my mom dropped us off at the security line, he began nipping at the baby, trying to bite me, and wandering away. The TSA officer kept asking me “Can’t you collapse this stroller anymore? What about the carseat?” as though I was trying to make his job difficult. On the other side of the metal detector, I set M up on the table (you know the one: it’s like 18” off the floor?) so he couldn’t run away while I packed back up the bags & got Baby J situated. Another TSA officer became agitated and said “Ma’am, you’re not allowed to set the child on the table. He could fall off! Do you know, we once had a little girl fall off!”

Seriously? Because if I had to pick my 2 year old son running away through the airport or falling off a low-to-the-ground table, I know which one is more likely to occur and be more dangerous, and it’s not the table.

Anyway, the boys and I headed to the Air Tran gate so I could see about being allowed to pre-board. M doesn’t do well with lots of people in a crowded space, and is therefore less likely to have a meltdown if he can board without being crowded by other people. The attendant at the desk was about my age and one of those people who you can just tell doesn’t like kids or people with kids.

“Hi! I was wondering if we can preboard. My son has autism and – “
“Yah, sure,” he cut me off. “I’ll let you know when you can board.”

Cue the blood-curdling scream.

I looked over to see the Menininho taking Baby J’s foot out of his mouth. All of J’s toes and the top of the foot were covered in deep, purple teeth marks. I asked the attendant if there was a first aid station and he said no, but he’d call someone. I thanked him and said I just needed some alcohol to clean the baby’s foot. Then, I tried to keep calm while taking care of the hysterical baby and holding on to M’s harness, while he was banging his head against the floor. I could tell the attendant was laughing at me to whomever he was talking with, but I couldn’t understand why and at that moment I didn’t care.

After a few minutes, a woman in a security-type vest approached me. “Is this the baby who got hurt? What happened?” she asked. I explained I just needed an alcohol swab.

“Um, we don’t have those,” she said. “You said you needed first aid, so we called the fire department.”

The fire department. I can’t make this stuff up.

Apparently the smug attendant gets his kicks out of humiliating women with crying kids. He could have explained that “calling someone” meant the fire department! I would have opted for soap and water. As it was, the bite marks were beginning to fade so although there would be a bruise, the skin wasn’t broken and alcohol wasn’t necessary. But, you can’t un-call the fire department, so we had to sit and wait.

4 or so firemen showed up, cooler and equipment in hand. I was already crying at this point because you can either cry or laugh and I sure wasn’t ready to find any humor in the situation. I was mortified! So, I’m trying to explain to one fireman that I am very sorry he got called and I never meant for him to be called while another fireman keeps asking me “Where is the man who bit your baby?”

BECAUSE IT TOTALLY MAKES SENSE THAT SOME 40 YEAR OLD MAN IS RUNNING AROUND THE AIRPORT BITING BABY TOES, rather than, you know, the TWO YEAR OLD CLINGING TO MY LEG doing it.

He seriously did not believe me at first that M bit the baby.

Talk about starting the trip home with a bang! It just went (further) downhill from there: no restaurants, no actual preboarding after all, spilled drinks, screaming, and an I-haven’t-pooped-in-5-days gift from the baby (contained in the Ergo at least).

I will never, ever fly Air Tran again after this. It will be awhile before I’m willing to fly solo with the boys again, either.

At least we made it home alive though!