Therapy

We see a behavioral therapist.  We discovered early on that two incredibly different parenting styles + one incredibly intelligent, manipulative little boy = a lot of headaches and heartache.  So... we found a therapist who not only treats Dylan but treats us as well. 

Man, he really can call us on our shit when warranted. He can also be incredibly supportive and gives amazing  parenting techniques and ideas. The result has been we are coming together to parent more. I have to learn to back off and Marc needs to learn to step up. We both want to do what's best for Dylan so we are learning and it's working for all of us. Problem is... he's crazy expensive. But as I've said in the past, I'd sell myself in order to continue seeing him. He's that good.

I will say that he worried us a bit. He seemed surprised that Dylan sleeps about 11.5 to 12 hours on average. He said that while it works for us now, as he gets older, developmentally, he's going to want to stay up later. I don't see that happening any time soon (he says next year but I think it may be longer). But he seemed very concerned about the amount he sleeps. Now it's got my brain going. I'm wondering if I should call his pediatrician and discuss it with her. Right now, I'll just sit with it. He's always been a fantastic sleeper. Most parents would kill for their kids to go to bed at 7:30 p.m. every night right?

SHE'S BACK!!!

Baggage & Bug are back!!!

~doing happy dance~

Update on spidey sense and a small milestone

I emailed the teacher.  She was out sick Monday and Tuesday and Wed wasn't quite right yet.  The schedule has been off so that would explain why Dylan is off. Okay onto the milestone :) Last night, around 7:15 p.m. Dylan came up to me, placed my hand on his face for some face squishes and said "Mommy, I tired, I go to bed". ~waits for everyone to get over their jealousy~ I said fine, took him upstairs, got him washed, brushed and into PJ's and then it was off to bed. I snuggled with him for a few minutes, came downstairs at 7:35 p.m. and announced "he's out!". He's getting better and better at self regulating whether it's sleep, eating or sensory.

My Spidey Sense Is Tingling

GAH! I hate it when this happens. I feel that something is off with Dylan. I can't place it. I think his teacher may have been out this week as nothing has been touched in his book bag all week with the exception of Monday and Wednesday. Wednesday we just got a positive behavior report and that's it. Nothing is written in his work book. No speech work nothing.

He also seems a bit off. Like something isn't right. This morning he said he didn't want to go to school until I told him it was Shabbat (he loves Shabbat).

I really hope it's nothing but it's quite rare that my intuition says something is off and it's not.

!#$@#@! Insurance

Our new insurance policy begins next month.   Unfortunately, Dylan's therapies are still not covered.  But some of our copays have gone down (yay), well visits are now copay free (yay) but my cost of insurance is up by almost $90 and... my beloved gastocrom is going from $40 for a 2 week supply to $70 ~thud~. I'm going from spending $1,040 for Gastocrom a year (approx) to $1,820 a year.

Where the hell is my health insurance reform. Dylan and my medical bills are absolutely crippling us financially.

I tried to go without gastocrom. I weaned myself off of it and have gone a few weeks without taking it. I've been flushing daily even though I'm taking my aspirin (I flush due to an extremely high progestaglandarin D2 level). My brain fog is terrible. I can't keep a straight thought in my head. I hate to say this but I really need this medicine but it's so fargin expensive it drives me batty.

Of course, the only population (that I'm aware of) that uses this medicine in this form is the Mastocytosis sufferers. Guess they know they have a captured audience so they can change whatever the hell they want. However, I shouldn't bitch too much, I do have insurance and it does cover the med. For that I am grateful.

Just watch this... please

Thanks to Dad Gone Mad

Singing

Yesterday, Dylan got himself into a snit.  After a warning or two, I sent him to his room to cool off.  I went up about 5 minutes later and I could hear him singing to himself "show me the way to go home". 

Drama

Last Monday - at Dylan's after school care - the woman went on and on about how adorable and sweet he is.

Last Friday - at Dylan's after school care - the woman told me that Dylan slapped another boy. We talked to him about it.

We reminded him over the weekend that hands are not for hitting, we don't hit our friends, etc. This past Monday - nothing. This past Tuesday - at Dylan's after school care - the woman told me that he is hitting the kids, interfering with their games and that this may not be the right program for him. I tried to explain his needs but she didn't want to hear it. She made it very clear to me that in order for her and her staff to properly care for Dylan and his classmates, they would actually have to do something besides sit on the bench and hope the kids don't kill each other and she wasn't willing to do that. We asked him why he was hitting the kids and he said in sad little voice "Mommy, they won't play with me". ~insert knife in Mommy's heart~

Fine.

Yesterday, called Dylan's old day care to see if they had openings. CHECK!

Yesterday, called the district's transportation department and arranged for a bus to pick him up in the a.m. from the house. CHECK!

Yesterday, called Dylan's old day care to verify they got the information and make sure they were ready to roll. CHECK!

Yesterday, called the after school people and told them Dylan won't be back and why. They thanked me for being professional in my delivery of the news (I guess they get a lot of screaming parents). CHECK!

Called Marc and let him know that Dylan starts back to old day care... Thursday. Yep - got it done in one day! ~doing the happy Mommy dance~

So... instead of Dylan being stuck in a big all purpose room (nightmare for kids with auditory processing and sensory disorders), he'll be in a wonderful place where he can go swimming, play basketball and gaga (Israeli dodge ball), continue to learn about Judaism, and be in an inclusive environment. YAY

Back To School Night

Tonight is back to school night. We get to hear presentations from the principal and others from the school, meet with his teacher, her aids and the therapists who work with Dylan daily and get to meet the rest of the parents of the kids in the room.  I'm really looking forward to it.  Dylan, in just the few weeks he's been in Kindergarten has been doing incredibly well.  His speech has been improving daily - coming home with new words (he currently likes to call things strange), his behavior is getting better and more age appropriate.  We are just thrilled. 

Of course... I could have lived without hearing that he slapped a kid yesterday at after care.  I asked him why and he said the boy wouldn't play with him.  ~sigh~  We talked about keeping his hands to himself.  Hopefully he gets it.

Like speaks to like

Last night, we had the pleasure of attending a birthday party for one of Dylan's classmates. The family lives about 5 minutes from us and has 4 boys. Dylan's classmate is the youngest of the bunch (oldest 16) and is as sweet as the day is long. There were about 4 other children in attendance which was a nice easy number for all the kid to manage.  

The birthday boy is older than Dylan (Dylan's class is Kindergarten through 2nd Grade).  I asked the other Moms of the older boys "is the teacher as amazing as I think she is?"  I got the same response from all.... "no... she's better".

One boy was there with his grandmother.  When we sang Happy Birthday, it triggered an auditory sensory response and he had his ears covered.  No biggie - we all get it.  I don't think Grandmom realized that and was trying to push his hands down.  I just wanted to walk over and let her know that it's okay - we all get it.

Marc and I did a great job (if I do say so myself) parking the helicopter for the night.  It was hard.  They have a trampoline in the back yard, no net, the metal bars weren't covered well and it was ripping in some parts.  Dylan had a blast jumping off of it.  Oy.

One of the boys has cerebral palsy.  His mother obviously allows him to decide what he can and can't do.  He wanted to go on the trampoline with the boys and she picked him up and put him up there.  The boys did lower their level of insanity a touch but they rough housed with him and he loved it.  At one point, the birthday boy stood up and the little guy clothlined him and knocked him right on his butt.  The parents were hysterical!  We laughed a lot last night.  It was so nice.

Tomorrow is back to school night.  We get to meet with his teacher and, hopefully, his speech and OT therapists.

Understanding stuff

I am currently reading Like Sound Through Water by Karen Foli. It's a story of a mother and her journey to discover her son has an auditory processing disorder. This book has been very difficult to read. It's very well written. But it hits home at every turn. When she speaks of her knowing something isn't right and being told by her husband that their son will be fine and will catch up eventually I felt that knife turn. When she speaks of the pain of reading that first test result where her son's testing is so very low and her agony and confusion. Gd I could have written a lot of this book.

So... it's slow going. I read, I get choked up and put it down. However, I have to get my ass in gear because it's a library book. Actually, I took out three books. All about various disorders that Dylan has been diagnosed with or is suspected of having. My Mom is giving me grief that I need to stop reading but I'm learning. As I learn, his behaviors make more sense. The more they make sense, the less stressed out I get over his actions. She doesn't get that though and that's okay.

Kindergarten is going well. I love his teacher and his therapists. They have been great with communicating with us and Dylan is really enjoying himself. I was a bit concerned with the after care but now I'm a little more relaxed. I've gotten to know the care givers and he's got himself a few girlfriends to play with (yes, they are about 8-10 years old). He's quite the Romeo my boy. His teenage years are going to be very interesting indeed!

Show me the way to go home...

Dylan loves music in all it's forms. I've sung to him since he was a baby. The first song he ever "sang" was Rainbow Connection and then he just would pipe up with words at the right time. He loves to strum his guitar and sing songs, usually making up words when he can't remember the right ones (which we love) but he never sang WITH me. That was... until the other day. I was driving home, singing "show me the way to go home", you know, from the Jaws movie, when all of a sudden, he starts to sing WITH me. OMG it was so much fun! Then I realized... his first song that he sings correctly and with me... is a drinking song. Yeah, pass me the mother-of-the-year award. heheheh Now we sing together every night on the way home. I'm sitting at my desk at work thinking about what songs we can sing on the way home. I love that he loves music so much. He also loves shows. My MIL took him to his first live production. It was "If You Give A Mouse A Cookie". He loved it. Sat through it with very little fidgeting at all. At summer camp, his advocate loved the days when the older kids would put on a show. It was guaranteed that Dylan would enjoy seeing whatever production they put on.

~spit~

That's what Dylan did at lunch yesterday. He spit into the food. I don't know if it was the food for everyone or just his own but ewwwww. I emailed his teacher this a.m. apologizing for his behavior, letting her know we addressed it at home (no punishment as he was given a time out at school) and asked her if she knew what may have caused him to do that. It's very out of character for him. He did it once before at day care and we know it was a frustration thing. Her response made me adore her even more. She said that she was thinking about it last night and thinks it was a sensory thing. He was pulling at his tongue before it happened and had licked the table ~insert confused face here~ prior to his spitting. She'll talk to his OT today to make sure that he's getting the appropriate amount of oral stimulation he needs. I have been told, by a few parents, that it gets harder as the kids get older to get the right services for children with special needs. All I know is what I have now and let me tell you, it rocks my world.

Overwhelmed

Last week, we had our final testing at the audiologist's office. Dylan's behavior therapist, Mr. D., feels that contrary to what his developmental pediatrician thinks, we are looking at a central auditory processing disorder (CAPD) vs. your run-of-the-mill ADHD. We found an audiologist who would see us since most won't touch a kid for CAPD until they are at least 7 (not mature enough to handle the testing which requires they sit for long periods of time and attend to tasks). Well, this audiologist (top in her field) does the testing in small bits so she was able to fully test him over 3 visits and the outcome was.... he has CAPD. Challenge is, she really can't give him that diagnosis for at least a year and be taken seriously but we know and we can now work towards helping him. Except, nothing really helps. That's what Mr. D told us. Mr. D, in addition to being a therapist, also has a child with CAPD. He's done it all. He's tried it all. He said we basically need to stay on him to keep trying and keep working his butt off in school. It's going to get harder because he's not going to want to always work hard so it's our job to keep him on task. David used the "d" word last night. As in "your son is disabled". I am really struggling with this. I mean look at him, he's strong, he's healthy, he's smart. How can you call this child disabled. But he is. I know that but it's killing me.

It's been a while

Is anyone still out there? Sorry it's taken me a year to write but damn life has been busy. I read back over last year's posts and laughed when I read in February 2009 I posted that Dylan had "a bit of a speech delay". Turns out it wasn't that simple. He has a severe speech delay. He also has dyxpraxia, sensory processing disorder, central auditory processing disorder, static encephalopathy, and possibly ADHD (you don't need me to post a link to that one do you?). I have spent a good chunk of my free time reading up on each of these disorders to ensure that we are doing everything we can to ensure that Dylan will have a productive school and home life. I've found the more I understand these delays, the more I understand his behavior. Also, seeing a behavioral therapist helps tremendously (anyone in NJ who needs a recommendation - let me know). I have also taken up sewing. I made Dylan a quilt ~insert puffed chest~ and am in the planning stages of making one for my Mom and Sister. We are financially strapped so buying the material is just going to have to wait. Between paying for Dylan's day care the past few years and the private therapy, let's just say that McDonald's is gourmet night out. Blech. We are on the right path though, we are working with a financial guy to get our bills down. Hopefully, we'll see some light at the end of this tunnel in the next few years. So.... how are you???

4 Years ago

Dylan was born. 4 years ago today I was in Boston, staying with our dear friends Andy and Lori just waiting. Waiting to become a mother. 4 years ago today, in Guatemala, a wonderful woman gave birth to the boy who would become my son. She has been on my mind a lot today. I wonder about her and how she is. I would love to reach out to her but my fear (and Marc's fear) is that we will hurt her by contacting her. I don't know. It's amazing how much has changed in 4 years. He's all boy now. No more infant, no more toddler - all boy. Running, jumping, playing. He's skinny because he'd rather play than eat (a skill Marc and I are trying to master). He loves to explore the world around him. He loves to be active. He's a great eater and a wonderful sleeper. He's still my baby and lets me hold him and rock him to sleep. These days I think it's more for me than for him. He talks up a storm and is becoming more independent. Today Marc and I are working a half a day, picking up Dylan from Camp and heading to the beach.

URGENT! Prayers Needed!

My dear friend Kim, after a very difficult pregnancy, had a beautiful baby girl. Ellie needed a shunt put into her brain so yesterday they did the surgery. After the surgery she was doing well but ended up having to be put on a ventilator.

Please keep little Ellie in your prayers (good thoughts/good vibes, etc.)

Michael Jackson

Yeah, I know, not something you'd ever think you'd see here. However, I am saddened by his loss. He, like Farrah, was a huge part of my childhood. I remember going to USA Skating to see the premier of Thriller. I loved his music, his moves, his talent. When the accusations came out that he had molested those kids... part of my childhood was lost. Because of his wealth, he could easily buy his way out of the situation. Did he? We'll probably never know the truth. Part of me wants to believe he was the victim of his fame and that he only wanted to be a friend to all of the children in his world.

I guess you're wondering why I'm blogging about it. The latest "news" to come out is that Michael may not be the biological father of his children. That he may have used a sperm donor. What is bothering me is the fact that the media is claiming Jackson not real father of his children. That "Surprise! Michael Jackson's children look nothing like him!

To all the rags printing this garbage... WHO THE FUCK CARES? He is their father. He has been the man raising them and these poor children are mourning the loss of their father. Not a stranger. Why is it necessary to point out they don't look like him. I know plenty of children who don't look like their parents (and yes, they are biologically related).

The adoption community faces this fight day after day. Just because Dylan is not biologically connected to me does not mean he isn't my child. I love him with the fire of a million suns - as does his father. The fact that we don't look alike means NOTHING.

So, to the media, if you have nothing to nice to say... do me a favor and STFU.

And now for something completely different.....

My masto is relatively stable so let's talk about the more important things in life.... family :) Dylan is going to be four in just a week. FOUR - can you believe it? My baby is gone and has been replaced with the most energetic and spectacular child. He loves to explore and loves books. He romps with his friends at his new day care and sleeps like a champ. He'd rather play than eat which is a skill I really need to develop. Now that we've got this medical crap out of the way, I need to play more. I've been so locked up in my head that I haven't been playing with him as much and that's no fun for any of us. We had a party for him with family & very close friends yesterday at Smith Playhouse. This place is truly Philadelphia's best kept secret. My best friend, Joelle, was so impressed at how safe and secure it was. Only 10 and under allowed in the playground so no teenagers bullying around the little ones. The playhouse is 5 and under. He was so cute singing "Happy Birthday to Me". He had such a blast. His Pops (Marc's Dad) came in for the occasion which was nice. I think it's the first time our families were together where I didn't stress. In case you didn't know - our families have never gotten along which has been a source of much angst for Marc and I. We finally told them that it's their problem not ours. My Mom said hi to his mother (huge step) and even spent the evening hanging out with us, Marc's Dad, brother, sister-in-law and niece. Nice time was had by all and I think those walls are slowing starting to crumble. This is a good thing because I really don't want Dylan caught up in this type of nonsense. I can't wait to go home tonight. Marc is leaving early and is going to put together Dylan's new big wheel. It's the original kind (not one of the fancy shmancy ones) and he had tried it at a neighbor's house and loved it.

More on Masto

So while I was up in Beantown, Dr. Castells ordered some additional testing. Some blood work and a urinalysis. I'm happy to report the blood work came back normal. Urine... not so much. My Prostaglandins:D2 levels are, um, elevated. By elevated I mean 10x normal (Normal is between 100-280 and I'm 1241). I was totally freaking out.

My dear friend Fiona, a fellow sufferer and genius extraordinaire provided me with some information on PD2 and Masto. Turns out it has something to do w/lungs, can be associated with COPD and of course, my thoughts go back to Dad.

I know he had this. I am positive about it. I can't help but wonder... would his COPD been as bad had he been diagnosed? Would taking a different regimen of drugs made his quality of life any different?? Not that this changes anything but it does make me very sad. Sad that something could have made his breathing a little easier if only they had found this.

Next weekend I have a follow up appointment with my allergist. From what I gather from Dr. Castells, it was quite a find she made... this masto. She seemed surprised that she would order a tryptase level. I want to give her a big hug. Not that I'm happy to have this disease but more that it was caught very early on (comparatively speaking) and hopefully, with the proper medications, I can expect to have not only a normal life expectancy but a good quality of life as well.

Of course, quality of life is, in some cases, a choice. If I don't choose to get my fat ass in the gym and get my eating under control, I won't see a good quality of life. Marc and I have an appointment with a nutritionist (we had an initial appointment and are very excited at the prospect to be working with her) and next week - I'm back in the gym.