5.26.2011

When times get tough...

When Times Get Tough... The Tough Go Blonde! The past week has been filled with drama, meltdowns, results from IQ tests, adaptive tests and every other test came down and no surprise the results were as expected, yet still hard to swallow. To keep my mind off the negative I decided I needed to do something for myself. I decided to take a risk, have some fun and get in touch with my inner Pin-Up girl :-) The most amusing part of this process was that I only had a 3 hour block of time when the kiddo was at class so this was a 2 day process and the first day I left with almost white hair - but left the second day looking like this!


It did throw Maggie off slightly but then I started talking to her and she realized who I was and then all was right in her world!

5.17.2011

It's the most wonderful time of the year!

Nothing is more wonderful than Horseback riding season! After all the mandatory, repetitive therapies - Horse Therapy is an exciting break! She loves the bumpy ride, giving them hugs and touching their noses. She likes singing to herself and noticing every little detail around her. I love watching her smile and rock herself to try to get the horse going faster :) I wish I could go riding every week - Lucky GIRL!
This particular horse she is riding is one of the smaller horses, but typically she likes the taller, larger and faster horses! She giggles like it's the most wonderful ride ever!
Signing 'Touchdown' while on the horse...

5.16.2011

What Makes Maggie..... Maggie!

Yesterday I was approach by a mom, who I see at church but I don't really know her, and she asked me this "What Is It That Makes Your Child Special?" I thought to myself, self ...that is the best, kindest, most lovely way anyone has asked about my child's difficulties. She genuinely thought my child was sweet, delightful and beautiful. She went on to say that she has a brother with down syndrome and how challenging it has been for their family. She just listened while I gave a short, non-detailed version of her diagnoses. She didn't feel sorry for me or Maggie. She didn't express pity. She didn't sigh heavily or say a lot of 'OOHHHH' She never gave a backhanded insult. And although I have had this type of encounter hundreds of times - I think this was my favorite and most uplifting because it got me thinking about what truly makes Maggie, Maggie.

On a medical form Maggie has dozens of problems and numbers and dates covering the page making any sane individual feel overwhelmed and possibly heart broken that such a young person has been through so much and has years to come of challenges.

On an IEP, Maggie is difficult, challenging, requires constant attention and multiple steps for adaptive procedures. She is behind in every thing she has been tested in. Her file is inches thick and she has never visited the principals office!

But like every standardized test - it is not a complete picture of the individual!

When I think about what makes Maggie, Maggie, I think about her Laugh - she has a full belly giggle, her whole body and every fiber of her being laughing, makes you have to laugh with her! She has the kind of laugh that just makes your whole world a little better. I love that she calms down and will get excited and dances to the song "Billionaire" - by Glee and she loves falling asleep to "Home" - by Michael Buble. We joke that she is a supermodel, but now I think she's an Italian supermodel - she doesn't like eating dinner but she will drink a whole bottle of Pelligrino, Italian sparkling water for a meal. She adores her uncles! And they adore her - they really are amazing with her. She loves bouncing on the trampoline! She is a football fanatic! She will will watch every game on Saturday and Sunday! She signs 'Touchdown' , 'Offsides' and 'False Start' - Correctly too! She could be a referee or a cheerleader someday - either way she gets to be near the action which is her favorite! She gives the best hugs! On the weekends she will wake up and play quietly until she is hungry and then will gentle touch my face to wake me up - (I sometimes pretend I'm still sleeping to see how long she will be patient and last weekend she tried 3 times to be gentle when waking me up - I hope she's imitating me and trying to be a loving, gentle waker upper)

I could go on and on...

She is wonderful, smart, beautiful, clever, feisty, sweet, unique, and above all My Daughter!


5.11.2011

Christmas in May... Sure

Is it normal to have Christmas songs stuck in your head... in May? I personally don't think so. It's not as though I went to target and they were playing holiday songs over the PA system. I haven't attended 10 school holiday programs or turned on the radio to 24/7 Christmas songs. I really don't have a reasonable explanation of why I want to listen to Christmas music or have certain songs in my head. On a side note, I love how you can't say Christmas, it's 'Holiday' as to not offend, even though half the traditional songs have the word 'Christmas' if not in the title, in the song... just my personal ranting...

On the upside of this weird craving, I have found a bunch of music I really like. SO because it's the season for giving, I will share with you, my gift to you :-)

It's Christmas Time - Jules Larson
Joy to the World - Seabird
Auld Lang Syne - Keri Noble
Applesauce vs. Sour Cream - The LeeVees
(technically a Chanukah song...)
Silent Night - Sara Ramirez
Let it snow - Ben Rector
It Snowed - Meaghan Smith
Christmas for Cowboys - Jars of Clay
It's Been Christmas Here - Blondfire
Come All Ye Faithful - Justin Mcroberts

5.10.2011

Playing with the dough


Ok So I have the song American Pie stuck in my head... go with it!

A LONG LONG TIME AGO, I CAN STILL REMEMBER WHEN THAT PLAY DOUGH USED TO MAKE YOU CRY. I KNEW THAT IF I HAD MY CHANCE I COULD MAKE YOU ENJOY THE DOUGH, BUT SENSORY ISSUES WERE TO MUCH :-)




While she did play, she did spend quiet a lot of time simply looking from a distance.






A few years ago, a few months ago it was like pulling teeth to get her to touch anything that set her off sensory wise! WAY TO GO MAGGIE! See Play Dough is not scary!!!

Reassessing

After thinking about it, which takes a lot of brain cells, I had to reassess assessments!
Are they repetitive, depressing and emotionally exhausting, YES. But on the flip side of the coin, I don't want to imagine my life without the knowledge and expertise of the professional, who by assessments can accommodate and really help my baby.

I don't like going through the process...

I really don't like hearing the results and the following steps that come after the initial tests.

It's like a blow to your abilities as a parent. A knife through your body, the body that gave life to this child.

I am however seeing progress! PROGRESS. That's the Magic word every doctor and therapist asks me about. Every appointment consists of the phrases "Are you seeing any progress?" or "I'm seeing progress!" I know it's easier for them to see strides when they only see her every 3-4 months or even once a year. For me though It's had to pay attention to the little, small progression she makes. I was trying to make a mental lists of things Maggie can do completely on her own, things she can do with some assistance, and the tasks she has yet to try, partake in, or will never do. I realized if I put her car seat in the center, allowing enough room on the seat for her to rotate her body around she can get in the seat by herself! I know, a 5 year old getting into a car seat, big deal right!?! - BUT It's those tiny steps that make the days easier, make the testing and all the assessments bearable.

5.09.2011

Assessments

It's Assessment time and I need a Happy Pill. It Sucks! I read every question and it bums me out. Endless cycle of circling '0', filling in 'NO' and 'NEVER' & then waiting for the results. IQ test, Behavior tests, among other medical and development testing.

This baby is 12 pages long with about 30 questions a page... That's more reading than an article on wikipedia and that's a lot of reading for me - it's not exactly a riveting work of vampire fiction :)
Oh and then on top of being extensive and time consuming - it's depressing!



5.08.2011

Happy Mother's Day

Every Day I am reminded that being a mom isn't the easiest or most rewarding of jobs But one day a year I get a cute gift from Maggie that her teachers helped her with so that makes it worth it... well... It helps. This year was a cute card and a pot of flowers. Last year was this adorable crafty craft.

Sorry the flash was going a little crazy when I took this pic...

Happy Mother's Day to all the mothers in the world!

5.02.2011

Long Night

It's just been one of those nights... Screaming, laughing, blood, injuries, food everywhere, crying & that's only the child don't get started on the Cats!! Seriously though it has been a Long afternoon/evening. Maggie's Speech therapist was out sick so speech was cancelled. Then because I live on Antarctica (Minnesota, same difference) Horse Therapy was cancelled on account of COLD and WIND CHILL - seriously May 2nd and it's 38 degrees!!!

So after finding football which was fabulous, the chaos began first was Maggie getting her leg stuck under the chair. She started laughing, so I laughed back and talked to her, then I walked around the couch and she started crying so I went back and saw she was stuck! I mean her leg up to her knee, tightly pinched under the chair - I have no idea how she got under there! I pulled her out and crisis dealt with. Hopefully only temporary scarring...

Then I was sitting on the couch having a conversation with my brother when Maggie reached out and scratched my neck and back with her freakishly long nails - I jumped and walked in the other room as to avoid screaming and scarring my child for life. I calmly came back into the room after the initial shock and realized I was only momentarily injured and she would survive without scarring only to find my child bleeding from her mouth. After filling 2 towels full of blood stains, the bleeding stopped and I found her lip spilt from dryness I'm guessing.

Then dinner came which consisted of a bunch of items she did not want to consume... And then there were Panda Puffs, her beloved cereal.... She ate cereal for every handful half fell on the floor, consumed by the dog and the other half went in her moth or fell on the couch... I mean so many peanut butter balls they were everywhere!!!

By the time it was bed time she was crying and throwing herself on the stairs and I had had enough - I was done! Tired. Stressed. Exhausted. Done with being patient and calm. I couldn't find a sippy cup - I took her cup from the previous night and had to rinse it out with scalding hot water to get ride of the fake milk residue only to fill it up with more fake milk and when she fell asleep it was heaven! I mean I love my kid but she needs sleep and I need a break!

I'm tired - Good night and Good Luck!

Football I love thee

January was an exciting month with the Superbowl, with the endless coverage of football on TV and pictures in magazines. Going out and seeing everyone wear jerseys. Maggie loves January and the Football frenzy that is the Superbowl. However when February came and weekends were no longer filled with football I had a very sad little girl. How do you explain to a then 4 yr old, that the season will return in a few months but the football players need a break?

Every Saturday and Sunday morning she wakes up and points to her Adrian Peterson Poster next to her bed and signs 'Football' and then when I say 'not today' she quickly signs 'Please' -because that works for almost everything she wants. I really love that she tries so hard to communicate and is motivated when it's something she really likes or wants.

It's no wonder to me that she signs 'Cereal' & 'Touchdown/Football'
:)

No football on the weekends is not an option so as the caring mother who would do anything for her child.... resorts to NFL channel and Vikings DVD's .... I know pathetic and kinda sad... but watch this video and you'll understand
video

Pure Joy and Happiness. I know what my baby loves!

5.01.2011

10 Things being the mother of a Special Needs Child has taught me

What's so different about parenting a special needs child anyways??? As parents we all grow and learn and become stronger more amazing people because of our children and the love we bear for them. But I think the difference is that with any child, parents guide and mold who they become. With special needs children - as parents we must be ready and willing to be taught...

1. Being the mother of a special needs child has taught me patience with everything is a must. A quality that at times can be taken for granted with a healthy child…

2. Being the mother of a special needs child has taught me I do have courage to face anything. It’s okay that sometimes I need to cry, to walk away just so I can breathe for a moment. And then I am back stronger than ever…

3. Being the mother of a special needs child has taught me to be understanding of those less fortunate, or different from you, never be quick to judge...

4. Being the mother of a special needs child has taught me that while yes, there are many moments of struggles those single moments of accomplishment are so much sweeter...

5. Being the mother of a special needs child has taught me that I do know what is best for my child. Even if I have to fight the school, the doctor, other parents, the insurance company, friends, politicians…

6. Being the mother of a special needs child has taught me that hope, even the smallest glimmer of hope can be enough to get you through the day…

7. Being the mother of a special needs child has taught me that the world is exciting, beautiful and that even the smallest of things is new and wonderful. To see life through a child's eyes is special, but through a special needs child's eyes is magical...

8. Being the mother of a special needs child has taught me unconditional love which I know comes from the fact that I was chosen by Heavenly Father to be blessed with this beautiful child, for many may never know such a blessing and I can’t imagine my life without her…

9. Being the mother of a special needs child has taught me that I am stronger than I thought I could be. That I am a neurologist, a nurse, a professional fundraiser, a housekeeper, a manager, a special educator, a researcher and an advocate all bundled up into the mother you can all plainly see…

10. Being the mother of a special needs child has taught me the greatest lesson in my life. I may be many things in the eyes of others but here at home I am the mother of a special needs child and this child loves me unconditionally and teaches me so much…that is what defines me, what makes me whole and loving and open to the infinite possibilities of the world…


AUTISM

Autism is a disorder of neural development characterized by impaired social interaction and communication, and by restricted and repetitive behavior. Maggie had a moment tonight that reminded me of a 2 year old Maggie. She used to take a group of 3 and sort them by tossing them into piles of 3 objects such as blocks or shoes. Always 3 and I would mess with her to see if she noticed by placing a 4th item into her group. She ALWAYS noticed and would remove it or another one of the objects to maintain her group of 3 at any given point. Maggie can be extremely Obsessive, is the polite way of saying it, but in actuality if it's not the way she wants it - she freaks out! It's quite simple so I try really hard to make sure things are the right number, color, smell, sound as to not set her off.

This evening she was desperately trying to sign something to me and I have figured out when she wants something but does not know the sign she takes both hands and waves them like she wants to fly. I eventually made out she wanted a drink. Which I got for her but as soon as I gave it to her she was signing again and pointing to the bookcase. I looked up and saw on the very top (10ft) her chewy. I took it down and she began to laugh almost cry - I understood her and that was wonderful! She took the chewy and went off and I noticed she had a group of chewy devices that she was sorting through and testing. She had piles and was mouthing each one of them.

Sometimes that Repetitive aspect is forgotten in some children, they outgrow it or become more controlled in social environments. Maggie is a creature of repetitive habit. It was one of the initial indicators something was not as it should be. She would become so fixated that if I touched her or disturbed her in any way it would result in a meltdown.

Sometimes a diagnosis brings a sense of relief. Sometimes it brings a sense of panic and uncertainty. I had mixed feelings. The more I read, the more I knew, the more I felt I could advocate and help my child. Yet in the same breath I feel more overwhelmed and intimidated by what the future holds.

And to be completely honest... I love the evening when Maggie is asleep and I have an hour or 2 of silence and am able to put some perspective on the day and the events or lack there of. And most importantly I need sleep and Myk time - I am a more patient mother when I have some perspective and breaks. I am so excited for this week! Maggie gets to start one of her most favorite activities on monday!!! I will post pictures :) I hope everyone had a wonderfully relaxing weekend!

Challenge

This morning in nursery I had a riveting conversation with an incredibly intelligent child about specific species of dinosaurs, characteristics of whales, traveling and food. I then braided a 2 year olds hair. I mean TWO french braids with her thin curly blonde hair. she sat for at least 10 minutes while my fingers worked this fine and whispy hair. And as so often is the case, I then looked over at my daughter, on the other side of the room away from everyone, twisting a chewy in her mouth while touching and mouthing everything in the room. I got that feeling that...

I will never have those experiences with my child.

It's hard to watch my child fixate on an object for an unusual amount of time. Or become so unhappy and so miserable so quickly in a situation. I try and praise her for every step she takes on her own or every page of a book she turns. I know I must say 'NO' or 'Don't do that!' a million times a day.

Some days are harder than others - Some days I stumble across articles like This. A mom with years more experience who gave me some perspective, hope as well as reality (which can really be rough)

If she, along with the many thousands of other moms can survive so can I - but I'm not going to lie or pretend that I'm excited for the next meltdown, because I'm not! But I am excited to see milestones, however small they may be to other children's, I'm excited for Maggie and her life! She's such a happy and joyful little person. From such a young age she was fascinated with everything and made everyone around her fall in love with babies. She even inspired a friend of mine to start her own family and she now has 3 children!

GOALS:
  • Figure out what I need to learn from a bad situation so that I don't repeat that mistake the next time.
  • Become more comfortable with others (strangers, random judge mental individuals)
  • I need to try harder to find the blessings in the challenges.
  • Not stress so much and just take it a day at a time



When you’re dealing with something like autism it’s a challenge 24 hours a day for your whole life.