Things You Need to Realize

These past two years have been filled with challenges and situations that have really made me think. I have sat by and listened to some very unkind remarks, questions, comments....although I know they weren't made to be malicious, they hurt, the situations were uncomfortable.
As a special needs parent I find myself realizing that the world is not educated in special needs at all. They are not educated on topics that matter, conversations that matter, but instead things are said, asked, and done that I truly can't wrap my mind around.

Here is a list of things that everyone needs to realize:

~When we walk into a medical office that we have been to a million times....Please do not ask me about my child like you have never met her or heard her history. Instead open that computer in your hands and read BEFORE you walk into our exam room. It shows me you don't care when you don't know.

~Please do not say you "understand" when you don't. This goes for doctors as well as everyone. Raising a child with special needs may not seem hard on the outside but when I say I am exhausted.....I really am. Understanding is something you can give with empathy and listening. Sometimes listening is the best medicine.....you don't have to understand or agree with our choices but as a family/friend please just listen to what is going on and why I am concerned.

~Just because Maelee is not in a wheelchair does not mean she "really" doesn't have CP. This one drives me crazy. If you spend any amount of time with her and watch her play you will see the gait difference, how she uses her right side most, and most of all you are not a doctor so please don't act like you know it all. Even finding a physician who knows anything about CP has become a challenge.

~Please be honest with me. If you have questions ask...don't just google everything and then roll your eyes......this applies to doctors and other individuals. I promise you I am educated in all that is going on..........I could have a degree in my child. When I tell you something is concerning, IT IS CONCERNING FOR A REASON. Trying to find someone with compassion in the medical field has been a challenge and finding help for Maelee is not always easy but I am up for the challenge today and forever.

~"Every child is different." Yes I understand this, everyone is different. Please don't use this as an answer to my child's concerns. Maelee is unique and we love her for that. She has been given challenges you can only imagine and her life has just begun. I know everyone develops and grows differently. Maelee is at a 14 month level in her fine motor, 16 month in gross motor, and does not use more than 15 words.....and most are repeating us. So as you can see she is behind, so when I say these things out of concern I don't want to hear "every child is different", instead try listening and showing compassion.

~When someone tells me Maelee seems "normal" I want to scream. What is this "normal" you speak of???  Maelee is doing amazing but what you need to know is all the hard work she puts into just making it through the day. Her determination and fight are something to admire. I don't want Maelee to fit in your "normal" category....I want Maelee to remain Maelee the rest of her life!

~Toddlers and children thrive off of routines, I know this. So when I tell you we have a routine and it is something we can't waiver from please understand. Maelee not only has the need for a routine because she is a toddler but also because she has SPD and routine makes her world go round. If we don't give her the right cup, allow the nighttime routine to be perfect, change her schedule without notice, don't allow for proper transitioning time, etc. Maelee WILL meltdown. She is not "spoiled or not punished, she can't control what happens and no matter what we do to stop it she has to calm herself.....and many times this takes a long time.

~Comparing your child to mine is hurtful and unkind. Comparing how she learns, talks, walks, grows, eats, or anything else is wrong. Do not compare you child to anyone's child. People need to realize that yes all children do things at different times, but telling me your child can say all there alphabet while I'm telling you Maelee's speech is regressing is something that completely breaks my heart. I feel bad that you can't see the amazing child before your eyes just because she can't name all the animals or make the correct animal sound. She is amazing and I am completely proud of her. She walks, talks, sings, bounces, rocks, plays, and most of all she is a miracle! So when your child does something amazing I am proud of them. Just remember to return that proud feeling even if my child doesn't do things on your time frame.

We have been blessed with a miracle. Our amazing sweet peanut continues to teach me and allow me to learn from her everyday. She is filled with compassion and has the greatest heart to offer. Her love shines bright.  :)

Too Many Appointments

It has been over a month since I wrote a blog and we have a ton of updates to fill you in on. So here goes.....

Maelee is doing good, we have the good days and the bad days but overall she is precious! :) She has been a trooper with all her appointments and therapies and still finds a way to smile during the day. Her personality is so funny, she is loving one minute and pretends to kick the next. I am just proud she can raise one leg up and not fall over every time. :)

Maelee had her ABR scheduled for last week to check her hearing and figure out a plan....well it was completely unsuccessful and resulted in a horrible sensory meltdown. I felt like we spent 2 hours torturing her just to be told they were going to do it under anesthesia on Sept. 4th! So we still have no answers to her hearing but it is becoming more of a concern.

She also will be going to the pediatric eye specialist next Friday to figure out if anything is going on with her vision. She constantly squints the right eye, her depth perception is terrible, and if she could sit inside the television to watch it she would. Her left eye sometimes does the floating in and out which they have been watching but we will see what is going on. So no answers to her vision yet.

She was seen by a Pulmonologist about 4 weeks ago to discuss her lungs and then schedule an appointment with the partner allergist. She is now on an inhaler two times a day....... completely impossible but we are trying everyday! :) Her lungs are not matured enough and after going through her records he feels she has BPD (Bronchopulmonary Dysplasia) and it has caused her lungs to take longer developing. So we are using the inhaler to help the best we can so maybe this winter she won't live with a nebulizer attached to her. He feels she will have the diagnosis of asthma but doesn't want to give her that yet....and we are just find waiting for that.

Maelee will be getting AFO's in the coming weeks and has already been casted for them. Her knee hyperextension has not stopped and this will help as well as keeping her off her toes. Of course we picked out cute colors and made sure they would be stylish. I would be lying if I said I wasn't worried that others will notice them more....they are not something you can hide.....

A big concern right now is Maelee is experiencing a speech regression coupled with a lot of meltdowns and behaviors. Her therapist are concerned as well but right now we wait to see what happens. The meltdowns have become so much the past few days that it is hard to even take Maelee out to a store or restaurant without her being overstimulated....it completely breaks my heart. There is nothing you can do to console her and as a Mother that is the hardest part. She has a wonderful team of doctors and therapists but I can't help feeling we should be looking elsewhere for assistance in this matter. Lee and I both know in our hearts what is going on.....but to find someone else who does is never an easy task.

So there is a quick update but the biggest thing is in less than 2 weeks she will be 2!!!!!!! I can't even believe how much she has grown! Our sweet Peanut is growing up way to fast!