Friday, November 5, 2010

I am the mother...

Inspired by Fiona2107.wordpress.com

I am the mother who lets my son eat fudge rounds, donuts or a smoothie for breakfast, just so I know he ate something before school and preventing an argument by trying to get him to eat something more nutritious.

I am the mother who doesn't care if he wears sweatpants, elastic pants or shorts all year round because the pockets on jeans hurt him and sends him into histarics.

I am the mother who doesn't care if he still wants training wheels on his bike at 8 years old.

I am the mother who will let him spend hours on the computer watching youtube videos with Mario, Sonic or Thomas the Train because it calms his mind and his body.

I am the mother that worries about her little girl having the same issues one day.

I am the mother who will be at the school demanding to see the principal and won't take no for an answer.

I am the mother who will seek out a childs parents if they keep telling my son "I will be your friend if..." and then my child get hurt in the end by letting someone "borrow" his toys, eat his lunch, get his tooth knocked out from a ball being thrown at him, etc., etc.

I am the mother who feels guilty that I have to work and can't take my child to school everyday and pick him up.

I am the mother who has an incredible, loving man, but wonders deep down if he will ever truly understand the problems Blake faces and has and if it will pose a threat to our relationship going to the next level.

I am the mother who lives off of caffeine.

I am the mother who tries to take control over things that I truly have no control over.

I am the mother who bought the boy a $20 star wars lego watch because the normal driver of him to school was sick and he had to ride the bus (which he hates because of bullies).

I am the mother who is so stressed that I have no clue which way to turn next and will forget anything that is not in the calendar or blackberry.

I am the mother who has spent many lonely, sleepless nights crying just to think about what my child has to endure everyday and what the future holds for him.

I am the mother who's heart breaks when her child says "I am a bad boy, I am a bad brother."

I am the mother who gets mad at herself and cries because I took, "Oh, he'll grow out of it," or "It's just a stage" when I knew deep down something else was different and wrong and now we missed out on early therapy and interventions that could have been helping him years ago.

BUT...

I am the mother of 2 very awesome, caring kids.

I am the mother who will live without so they can have.

I am the mother who wishes she could be more resilient like her son and let people's words and actions just bounce off and not be worried about again.

I am the mother who wishes people truly understood my child and could be more compassionate to him.

I am the mother who vows to spend every last breath I have researching for help and a cure for Aspergers and SPD and to end bullying, especially in schools.

I am the mother who thinks a smile and a hug from my children are worth a million bucks.

I am the mother who cries when my child tells me his feelings instead of acting out, because this is a small breakthrough.

I am the mother who fought with her sister when they were younger, but would give ANYTHING to have her not living 800 miles away now. The one person I can TRULY say loves the kids and doesn't judge my parenting skills. My best friend.

I am the mother who doesn't quit.

I am the mother who loves to sit with him and look at his scrapbook over and over and over again to remind him what a special boy he has always been and always will be to his mommy.

I am the mother who loves to hear them laugh. It means more to me than money could ever buy. Money doesn't buy happiness, but sometimes time does.

I AM THAT MOTHER!

Tuesday, October 26, 2010

Awesome ETSY find...

I love ETSY!! I have been looking for some labels that won't wash off of Emma's cups when we send her to daycare or the church nursery. I kept writing her name on her cup with a Sharpie, but everytime I washed her cup it would fade off. Not anymore!! I stumbled across this shop and this is a really reasonable price for you momma's needing labels for your childrens bottles, cups, etc... Take a look! 30 labels $11.99 and free shipping!

CAROLINE'S LABEL SHOP!

http://www.etsy.com/shop/abivens2?ref=seller_info

Dishwasher Safe Labels - 30 labels - Free Shipping

Dishwasher Safe Labels - 30 labels - Free Shipping

Monday, October 25, 2010

On the line...Part 2

the rest of the story....

so, where do we go from here? I have put in numerous hours of research into different supplements that are suppose to be comparable to what he is on now. We are now in the process of cutting his dosage of the Risperdal and titrating him off of it altogether. We have started introducing Melatonin. The first night at 4mg and it took about 2 hours before he fell asleep. The second night we increased it to 5 mg and he didn't fall asleep until 3:30 in the morning. I wonder if his body is just use to the high dose of medication to fall asleep? Either way, I know it is going to take his body some time to adjust. I am also getting him and Emma both a weighted blanket. I have heard such great reviews from people using them.

So far, the change in teachers/classroom has helped. He is a little more comfortable. He has had just a couple of instances when things didn't go his way. Last week, I had to make a trip up to the school because Blake got home and I called like always when I know he's home with my brother, to see how his day went and come to find out, some kid in PE punched Blake's tooth out. Blake was pushing the boys arm to get his attention, he wanted someone to talk to, and the boy told Blake he was bothering him and then PUNCH. This is NOT OK!!! I guess good thing is, it was a baby tooth and not a permanent one. What REALLY got me was, the coach didn't call, the teacher didn't call, the nurse didn't call, no email, no phone call, no letter sent home! This made me hit the roof. I can't remember when I was this angry. The nurse gave him a bag for his tooth. I made my way up there the next day and Blake and I had a talk with him. I was assured he would get to the bottom of this and of course, I haven't heard back...yet! =) I am calling this afternoon to find out what is going on. At the visit with the Principal, we found out a kid in Blake's class has been begging Blake to share his lunch with him and "he'll be his friend." I so wish Blake could understand what it means to be taken advantage of. All he wants is a friend. A true one.

About two weeks ago, I happened to talk to an old friend that I went to high school with. Her daughter has SPD, but she is leaning more into the Aspergers world now as we have the Aspergers, but seeing more of the SPD symptoms now. She shared with me the OT and ABA therapist that she used before the Army moved them and I called last week and we now have an appointment with the OT/ST this coming week. I really hope this is the open door we have been waiting for. Blake needs this. I want him to have some sort of being comfortable in his own skin feeling. I filled out the sensory checklist and was amazed..to say the least. It seemed like I checked 100 or more things. Maybe what I am learning from my blogger mama friends and their lives with their Asperger/SPD kids is opening my eyes to a new world for Blake. One I didn't know was out there. So, till appointment time...........

Wednesday, October 13, 2010

Tuesday, October 12, 2010

On the line....Part I

Wow, what a crazy week it's been.

As, I sit and ponder over it all, it's starting to all make sense. I won't lie and say I don't feel guilty for not recognizing things sooner for Blake. Now, the more I learn and see symptoms, I am acutely aware and find myself watching Emma like a hawk for anything. At times, I see beginning signs of the same things Blake did. BUT, at 17 months, is it a baby thing she's learning, maybe at daycare, is she growing out of it, or should I immediately ask for referral to a specialist and try to catch everything much earlier than I did with Blake. I think the main reason I missed a lot of things with Blake is because he was so sick much of his first 2-3 years of life. 8 hospitalizations for dehydration secondary to reflux giving him pneumonia and him immediately not wanting to eat. A fundoplication at 2 years old and immediately, medically, he was "fixed." Not one hospitalization since that surgery and no more problems with reflux, no medications. He was above target for his age. He could read by 3, talked good (fast, but understandable), loved to ride a bike (at the time), had (still does) a photographic memory and could tell you how to get to his favorite places. Sensory is everything I missed and I could kick myself for not realizing was a problem at the time. Very particular about his foods, textures, loud noises, eye contact, fascination with legos and Thomas the Train, all the stimming...bouncing, spinning, flapping, eye blinking, hitting, running into things, furniture, tantrums, not realizing danger, sun sensitivity...I could go on and on, thing is, I just thought all kids were different and he was like that because of being sick all the time when he was younger and now having to catch up to everybody else and he was on overdrive.

Preschool came and that's when I got the bombshell, something WAS different. The teacher suggested it was ADHD. Paperwork was filled out by myself and the teacher. I didn't take it in to begin with. I didn't want to hear news that my child, my whole heart, something could be wrong. I could tell by his handwriting and him never wanting to touch a pencil, it was going to be very challenging. During the summer before kindergarten, our pediatrician sent us to a psychiatrist for "testing." His testing consisted of asking a few questions, looked at the paperwork both the teacher and I did and said he has Aspergers and ADHD. Didn't say, we need to see a psychologist for testing or anything, just here's your diagnosis and here's 3 prescriptions. Talk about shock planet!! I don't remember driving home that day. I had never heard Aspergers at that time, no explanation of what it was, was there a cure, what the options were, just diagnosis and prescriptions.

What that doctor didn't know, is this momma isn't a here do this kind of momma. I am my child's only advocate and I'm not just going to throw him on some medication and take the easy way out without checking on the side effects. I did finally agree on letting him go on medication for ADHD so he could do well and learn at school. 5 medications later, we finally found one that agreed with him. His concentration got better, he was able to pay attention more, but outbursts, irritability and sensitivities continued. He was still not sleeping at all at night, so we agreed to try him on medications for this short term. It has helped him to sleep, calmed the tantrums some, BUT he has bad stomach problems (aching, constipation) from it and has gotten some worsening of tics (eye blinking, stuttering) associated with side effects from his medication. UGH!!! Poor fella. I just want what's best for him, in the here and now and in the long run. I have been thinking of taking him off of the night medication, but didn't want to take him off cold turkey and throw his system into a major fit. That would not be good for him, for me or I am sure for people he was around.

Part 2 next.....

Thursday, September 30, 2010

Medications vs. Supplements

Can someone shed some light into what worked best for your Aspergers child? We have and are on some medications now, but I am VERY interested in trying some natural supplements now, due to some of the side effects Blake is having with the medications.

Thanks Aspie families!

~Lisa~

Tuesday, September 28, 2010

needing some help....

Tomorrow is the day we have been waiting for. Our 504 planning meeting. I have been doing so much research between IEP's and 504's and I STILL think Blake qualifies for more IEP services than the 504, but I know the 504 is a start. I am looking at these forms and they are a bit overwhelming, or maybe it's the fact I haven't felt so good today. Anyone have any ideas, suggestions on 504 vs IEP for Aspergers'. I'll take all the advice I can get...

Friday, September 24, 2010

FINALITY at its finest!

It's taken me a few days to take in all the events that's happened this week. I have started writing this blog for 2 days now and just haven't felt peace about finishing it...until now. FINALLY, after years of requesting an IEP for Blake and being turned away from the school by the teacher, the counselor  because academically his grades were great, FINALLY, FINALLY, FINALLY I met with assistant principal yesterday and it was a different experience altogether. I went there anxious, nervous and feeling like it was going to be another waste of time, like knocking on another door never to be opened. BUT, this week I found new found hope from you Aspie momma's and seeing your journeys with your kids. It hit me, if I'm not Blake's advocate, who will be. NO ONE, I'll tell ya. I am his mom and it is my responsibility to stand up and not take no for an answer again. If we get told no by one person, keep going and going and going. I left the school refreshed and energetic, like I could take on the world for him. I always want him to remember his mommy never giving up and always fighting for HIS best interest. Blake has had a very hard year this year in 3rd grade. Last school year, he was bullied all the time on the bus by one certain boy who would get a couple more older kids to help him pick on Blake. Some strange way, the bully happened to get assigned in Blake's class. YIKES!! The bully his classmate!?! Not happening! He has had trouble getting hardly any classwork done because he is constantly afraid someone will look at him or the bully will throw things at him. He would bring home gobs of homework everyday. The teacher was aware and did not let them sit near each other or walk in front of or behind one another. The teacher was pregnant though and missed days or left early because of doctor appointments and such and the subs would come in and not know. Blake was so nervous that he cut the insides of his socks with scissors along with a pair of shorts, he would chew on his shirt or he would sit there and draw. They have lots of sentences to write, spelling, grammar, math and he already doesn't like to write so that was added anxiety and stress for him. The teacher left yesterday to be induced, so they will have a sub for 6 weeks, also another fierce anxiety level for him, because he HATES change. So yesterday at the meeting, the assistant principal, Mrs. H, felt really bad for him not having a comfortable environment to learn in, so she changed him to a new class, a male teacher (who he seems to be comfortable with) who also has less number of students in class and has lots of experience with Aspergers. WOW!! Really, is my boy finally going to have some calmness? It's been great so far. I like Mr J, he emailed me last night that he and the students were excited about Blake joining their class, he has emailed me today a couple of times to let me know Blake was having a great day and he knew some of the students from previous classes and he seemed happy. WHEW!!! What a load off of this momma! I'm so happy for him. He deserves this. We also were told that we can do a 504 plan because he didn't qualify (there's the words again) for an IEP, so a 504 is a starting place. We have our meeting next Wednesday with the teacher, the education director, counselor and assistant principal. I'm actually not nervous about it like I thought I would be.

Side note....tonight is momma and Blake "date" night....let's see what chicken place we eat at tonight!..lol...the boy should really be clucking...looking forward to some one on one time with my little guy while daddy and Emma have their daddy/daughter date. Funny, daddy having a date with a 16 month old. Wonder whose date will be the most interesting? Afterwards, stopping at the Redbox for some movies, then to all pile in the big bed with popcorn and chocolate milk for family movie night.........

Friday, September 17, 2010

Lock-in

Tonight we are having a lock-in at our church for a back to school bash for our kids ages 6-12. We are expecting around 100 kids. It is from 6:00pm tonight until 8:00am tomorrow...Talk about sensory overload =) There will be lots of crowds, so I am curious to see how Blake does with it all, but mommy will be there, so I am sure he will be just fine...tomorrow, I see a longgggggggggggggg nap in the schedule for us all....camera in hand and off we go!
                                                                                                        ~Lisa
                                                     

Thursday, September 16, 2010

Sensory issues at school?

This is from an article I just read from Dave Angel, whose son has Aspergers...Thought I'd pass it along. I know I will be sending a copy to Blake's school and to the counselor...

Sensory integration disorder affects most children with Asperger’s.  Sensory systems control every move we make and a faulty sensory system leads to problems that affect many areas of education.  It is important to understand the sensory systems and how they work.  The three main sensory systems are the tactile, vestibular, and the proprioceptive systems.

In the school setting, children with Asperger’s sensory issues can really suffer.  Children may be over sensitive to sensory input, or they may be under sensitive to input.   Most children are a mixture of sensitivity within the sensory systems.  Here are some of the commonly affected areas within each of the three sensory systems.

*    Lights

*    Sounds

*    Smells

*    Touch

*    Stimming-spinning, rocking, hand flapping, or humming

*    Loss of balance

*    Sensory seeking crashing, falling, or bumping into things or people

*    Fine motor/tactile grasp-(poor grasp affects handwriting)

Disruptions caused by the Asperger’s sensory connection interfere with all aspects of the child’s life.  It is imperative that these sensory problems are addressed.  Occupational therapy and sensory integration therapy, both performed by occupational therapists, are the most common treatments for sensory issues.  A good sensory profile plan will look like play and will be fun for the child.  It will include a variety of activities like joint compressions, deep pressure massage, skin or body brushing, swinging, and jumping.  Remember, each child’s sensory profile is unique, so these activities will vary.

In the school setting, a child with Asperger’s sensory issues will need this sensory profile and corresponding activities in order to remain calm and focused.  For example, a sensory-seeking child may jump on a trampoline for a few minutes before tackling his math lesson.  Teachers must be aware of the sensory needs to keep order in the classroom.  This book, “Answers to Questions Teachers Ask About Sensory Integration”, by Stacey Szklut and others, can be a very useful resource for teachers.  Even though this book is geared towards teachers, parents can also benefit from the knowledge on sensory integration found within its pages.

My new friends...

Originally I started blogging just about my everyday life, what the kids and I are up to, the new school year, upcoming surgery for me, renewed love of photography and my new journey with it.

Then, the other day, I sat and thought about Blake and this school year. I just don't feel like Blake and his teacher click. Maybe it's because she hasn't had many other Aspergers children in her class before or maybe I am just being my protecting mother self. I am really worried about him this year, main reason being, he doesn't do real well with change. His teacher is 39 weeks pregnant. So, after a month and a half of school being in session, she will be having her baby next Thursday and they will have a substitute for the next 6-8 weeks. The adjustment period Blake will have is what worries me most. Will she be understandable? Has she dealt with Aspergers kids before? Is he going to have anxiety attacks everyday because someone new is there? Only time will tell and all I can do is pray that doesn't happen. I am HOPING they click right off and have no trouble.I have been trying to prepare him, so no unexpected surprises arise and he acts, right now, as if he's ok with it all. The class has already met the teacher that will be coming.

So, I started typing in google Asperger blogs. That was the start of a new beginning and probably one of the best things I have done in a longgggg time. I have met some VERY awesome people through their blogs as Asperger mom's. It feels soooooooo amazing to have your own feelings put into words by someone else. My absolute fav right now is Alysia @ http://trydefyinggravity.wordpress.com/. This girl is truly inspirational. It's great to know that she is so real, so helpful and willing to help anyone. I know that if I am going through anything, I can usually look to one of her blogs and my help is right there. I just recently started following Life in the House that Asperger Built at http://lifewithasperger.wordpress.com/. I first clicked on Alysia's blog and have found numerous other Aspergers blogs, each with their own special gifts and own meanings. The one thing we ALL have in common, is our love for our children and the willingness to learn more everyday about ASD so that we teach outsiders who our kids are and who we are through them. I have gained a whole new set of friends. The difference is, these friends understand me and understands my child. These friends don't judge. Like I try to say..."My methods of madness are my methods of madness and they work for me." No one has to understand how I discipline my child or if they think he's spoiled. We do what works for our family. Earlier in the week, I put as my status on facebook, "Everyone should have to live a day in the life of a special needs child, their parents or siblings, only then could you even begin to know what this life feels like."

So, for now....Blake's happy. He has had good and bad days so far this school year. The bully that picked on him the most last year on the bus, happened to get put in his class this year, so it didn't start off well, but the teacher is aware and makes it a conscious effort to watch them. They don't sit beside or in front of each other. She has noticed that when Blake gets nervous, he grinds his teeth, he talks nervously, or he will talk to himself (that's how he reminds himself of what he has to do) so far that's it. He has gotten in trouble once because he was talking (to himself) in the bathroom and a little boy told on him, but once I spoke to the teacher about his talking, she was ok with it and apologized to Blake for loosing a number that day for behavior. Only time will tell how the rest of the school year will go. We haven't had our IEP meeting yet, very nervous for that. 

So, as usual, we take one moment at a time and that's all we can do. We cherish the good days and learn from the bad ones and always know, there is someone there for us whenever we need them.........

Lisa 

Wednesday, September 8, 2010

Labor Day Fun.......

We really enjoyed our 3 day weekend. Took one of our "other" children, Cameron, with us to the lake on Saturday and then on Labor Day Monday, the 4 of us went to Pine Mountain...here are a few pics from our trip....
A great family, friends, fun filled weekend. Of course, it went by way too fast and it was time to go back to school and work before we knew it......
Lisa

Wednesday, September 1, 2010

Pics from my first photoshoot........



these are just a few.....I took about 150 shots that day....it was so much fun!!

Wednesday, August 25, 2010

Photography underway.......

so, a couple weekends ago, I took Blake and Emma to get their pictures taken by Hope, a girl I went to high school with. We went down to Heritage Park and although, it felt like 185% humidity out there, we had a great time and she got some VERY good shots. This, once again, got my interest sparked back up to taking some photography classes and doing photography as a side job, which I have always loved and wanted to do. So, I signed up for one class that will be next Thursday, Sept. 2nd. After that one, I can sign up for more, which I will be doing. This is going to be great and I am VERY excited about this opportunity to do something I LOVE. Here are some pictures that I have taken and edited....



here are some from the photoshoot with Hope