Things have improved since my last post and I thank you all for the love and support. Sometimes this life just gets to me and I let down my defenses. It's a vicious cycle of strength and breaking points. I cried most of that day, impatiently waiting for it to end so I could sleep it off and start fresh the next day. After my pity party I decided to look into more ways to help Naysa. As you know, she's been doing ABM or Anat Baniel Method of therapy in place of Physical Therapy and Occupational Therapy. I can't say enough good things about this method but it's something that needs to be consistent and due to scheduling conflicts with our wonderful practitioner, Naysa hasn't been getting the 3-5 times a week she really needs to be successful. So, I put in the request to the scheduling department up North, in San Rafael to do a week of intensives with Anat herself and her top practitioners! I am VERY excited about this and anxiously awaiting an answer of availability. We are looking to go July 8-12. It is a pricey little adventure and thankfully some family has offered to pitch in but I will also be holding a fundraiser for those who are interested in assisting our efforts to get our bug the help she needs :) She will have two, hour long lessons a day. One in the morning and one in the afternoon. I'm estimating this week long trip to cost us about $2500, so any little bit helps.
On the baby brother front, things are going well! I am 27 weeks along and recently transferred hospitals. Originally I was going with the OB who delivered Naysa because I knew him and he was great with that birth, but he is also a Perinatalogist and we won't require so much medical intervention this time around. He wanted to perform a repeat cesarean section at 36 weeks and I am not comfortable with that. If it was an emergency and I HAD to be delivered that early, then yes...by all means do what you need to do for the sake of my baby but to schedule that?? No way. I told him I was willing to go to 38 weeks, late 37 weeks but apparently he had vacation plans so we had to stay around certain dates. Are you kidding me?!?! All of this on top of the fact he wasn't on board with any of my birth plan or even discussing the possibility of a VBAC (vaginal birth after caesarean) just turned me off to going with him again, so I switched! By the recommendations of some amazing strong mamas, I will now be going to UCSD and couldn't be more excited! They are exactly what I am looking for as it's a holistic hospital. I don't have to request immediate skin to skin, delayed circumcision, no vaccinations....they just DO it that way. I had my initial appointment on Tuesday and go to meet the OB on the 19th to discuss possible VBAC, if not then schedule my family centered cesarean birth. I am feeling good, just low energy but with a little bug to keep up with and run all over San Diego that's to be expected. All seems to be well and healthy with the baby but I don't think I will REALLY be at ease until he's here and I can see for myself.
Now for some random updates:
Naysa's Encephalocele repair surgery is scheduled for August 27th, unfortunately it couldn't be moved up so it will happen a week or so after the baby gets here which means I won't be able to stay the night with her in the room :( We see Dr. Levy in two weeks so talk more about the surgery and discuss replacing her shunt with an ETV when it fails, as shunt failure is VERY common after these types of surgeries.
June 1st our first niece was born! A beautiful little 8lb girl named Ada Leoni :) Benjamin was able to be there with his brother and his wife for the birth. I couldn't be more proud of my seester who had a drug free home birth at 22 years old, brave lady! Everyone is doing well and adjusting to life as new little family.
Benjamin is still med-down from his motorcycle incident but healing up great so hoping for a med-up status at his next visit with the Ortho so he can finally submit his cross rate package for SAR Corpsman and get us out of San Diego early! ***FINGERS CROSSED**
Friday, June 7, 2013
Saturday, June 1, 2013
:(
I don't know if it's the hormones or if I'm just long overdue a good cry, but last night and today have been rough. I find myself mourning the toddler I am missing out on if Naysa was a neuro typical child. I was reading to her last night and she did her usual feeling of the book but not paying any attention, head back and forth and I just started to cry. Here I am so desperate to bond and read to my baby girl, wishing she would bring me book after book to read to her or read the same one over and over while other parents are ignoring their kids or telling them to go play by themselves. I want to constantly be picking up toys because SHE left them all over the house, not because I pulled them out to play with her. I want to step on barbies in the middle of the night and have princess tea parties. It's so unfair and today I can't handle it! Don't tell me to be thankful, she's come so far or anything else you are thinking to say because I KNOW! I know you mean well but until you've been in my situation and know the things buried deep down I would never dare share, you cannot say anything to make it better so please don't even try. It's not fair my girl gets so frustrated because she wants to talk but can't, it's not fair I know she would be so much fun, so loving, so funny and kind if she could do things like a typical child. Why isn't she progressing?? All of the therapy, the diet, the supplements, the time, the repetition...why can't I help her?? I feel like there is something I'm not doing and I don't know what. I feel like I'm failing her and it's making me lose hope, lose motivation. I just want to hear her say a word...any word, a clear, intentional word.
Saturday, April 13, 2013
Thank you, Bug :)
Naysa Diane,
In your two short years, you have taught me more than anyone could dream to learn in their lifetime. Because of you I don't immediately judge a parent who can't control their child, as there may be underlying behavioral causes such as Autism or Bipolar disorder. Because of you I look the mother of a physically disabled child in the eyes and give a knowing smile instead of pretending I don't see them. Because of you I know real and true love. Your milestones are miracles and not just a time line of development. Your dada and my hearts burst at the seams with pride and joy when you learn or do something new, no matter how small or insignificant it would seem to the parents of a typical child. Nothing is ever overlooked or missed because we watch you so closely with such amazement. We don't get frustrated when you won't eat something we just made for you or when you refuse to try something new, we thank God for your incredible chewing abilities and that a feeding tube was never needed. We don't argue over whose turn it is to entertain you or take you to the park, we pray someday you will be throwing a tantrum to go.
There is an entire world that most don't even know exist. It's a world of the strongest men and woman who have chosen to fight, advocate and be there 100% for their special needs child. They live their lives in and out of hospitals, countless doctor appointments and therapies, spending more time on the phone with pharmacies, insurance companies, medical suppliers, offices and respite care than most people do in a lifetime. And they do it with heart. All day, every day...because that is what's best for their child, that is what keeps their child alive. We don't do any of it for recognition and it's actually quite uncomfortable when we get compliments because we are just doing what we assume any parent would do for their child, though I am painfully aware that is not always the case.
Each day with you is a blessing and that's all I can ask for. Another day, another birthday...because I shun the thought and knowledge that your life may be cut short. I promise to do whatever possible, everything in my power to help you succeed and thrive. I love you bug, thank you for teaching me my love and strength knows no limits.
In your two short years, you have taught me more than anyone could dream to learn in their lifetime. Because of you I don't immediately judge a parent who can't control their child, as there may be underlying behavioral causes such as Autism or Bipolar disorder. Because of you I look the mother of a physically disabled child in the eyes and give a knowing smile instead of pretending I don't see them. Because of you I know real and true love. Your milestones are miracles and not just a time line of development. Your dada and my hearts burst at the seams with pride and joy when you learn or do something new, no matter how small or insignificant it would seem to the parents of a typical child. Nothing is ever overlooked or missed because we watch you so closely with such amazement. We don't get frustrated when you won't eat something we just made for you or when you refuse to try something new, we thank God for your incredible chewing abilities and that a feeding tube was never needed. We don't argue over whose turn it is to entertain you or take you to the park, we pray someday you will be throwing a tantrum to go.
There is an entire world that most don't even know exist. It's a world of the strongest men and woman who have chosen to fight, advocate and be there 100% for their special needs child. They live their lives in and out of hospitals, countless doctor appointments and therapies, spending more time on the phone with pharmacies, insurance companies, medical suppliers, offices and respite care than most people do in a lifetime. And they do it with heart. All day, every day...because that is what's best for their child, that is what keeps their child alive. We don't do any of it for recognition and it's actually quite uncomfortable when we get compliments because we are just doing what we assume any parent would do for their child, though I am painfully aware that is not always the case.
Each day with you is a blessing and that's all I can ask for. Another day, another birthday...because I shun the thought and knowledge that your life may be cut short. I promise to do whatever possible, everything in my power to help you succeed and thrive. I love you bug, thank you for teaching me my love and strength knows no limits.
Friday, April 5, 2013
Ultrasound Scare
Yesterday's appointment...where do I begin? I was excited to go because it was the first scan Ben had been able to attend since the first one confirming pregnancy, but I am also always nervous and I know he is too. We sat in the waiting room in silence, a comment here and there but mostly trying to distract ourselves until they called my name. Everything started off well, he is perfectly perfect...until I noticed her spending a lot of time on his stomach. I was afraid to ask if everything was okay and why she was looking there for so long so I just held my breath until she spoke. She said she couldn't see any fluid in the stomach and she was going to see if the Doctor wanted to take a look. As she left the room my mind raced and I had vivid flashbacks to the day we were told of Naysa's Encephalocele, I felt the tears burning behind my eyes and prayed. My poor Benjamin is sitting in the chair next to me as I lay on the table staring at the ceiling, doing what he always does when I'm upset...tries to make me laugh. It didn't work but I love him for trying, especially because I know he was just as panicked on the inside. Every time I heard a nurse or doctor talking or hanging around out side our door I prayed they weren't coming in with a complicated medical term for a condition our baby had. The thing that caught me so off guard is I didn't have a feeling anything was wrong, this entire pregnancy I haven't had that feeling and with Naysa I did. I didn't buy baby clothes or anything baby related until I was almost 20 weeks because I was so weary. That day we made the 40 minute drive from Atsugi to Yokosuka I had a feeling in the pit of my stomach something wasn't right and I wasn't able to just enjoy going to see our baby with my husband for the first time.
When she finally came back in she said we would check one more time and then we would just be sent downstairs to see the OB. Another check and still couldn't see the stomach so downstairs we went. We sat in that little room for about 30 minutes waiting on the Doctor and I couldn't stop thinking. She finally came in, asked a few routine questions which I barely remember mumbling answers to. She started to explain the situation and said it could just be bad positioning and the baby isn't cooperating and to come back in 3-4 weeks. Yes....almost a MONTH to sit on the fact there is a possibility my baby has a birth defect. My eyes watered and I stopped responding to her questions other than "mmhmm." I felt my face flush and was about to lose it, thankfully she saw this and came up with a solution. She called back upstairs to see if they could take another quick look and walked us up to make sure we got right in. I got back on the table and Ben went to the restroom, I held my breath as she applied the warm gel and started to roll the wand towards the stomach...and there it was! The little dark grey patch I was so desperately hoping they would find. She snapped a photo and I could breathe again. It was so quick, I was already off the table by the time Ben came back from the restroom. He walked in with worry on his face and I told him everything was fine so he could breathe again too. I couldn't shake the funk I was in the rest of the day, that whole experience just wiped me out. So very thankful he is healthy.
When she finally came back in she said we would check one more time and then we would just be sent downstairs to see the OB. Another check and still couldn't see the stomach so downstairs we went. We sat in that little room for about 30 minutes waiting on the Doctor and I couldn't stop thinking. She finally came in, asked a few routine questions which I barely remember mumbling answers to. She started to explain the situation and said it could just be bad positioning and the baby isn't cooperating and to come back in 3-4 weeks. Yes....almost a MONTH to sit on the fact there is a possibility my baby has a birth defect. My eyes watered and I stopped responding to her questions other than "mmhmm." I felt my face flush and was about to lose it, thankfully she saw this and came up with a solution. She called back upstairs to see if they could take another quick look and walked us up to make sure we got right in. I got back on the table and Ben went to the restroom, I held my breath as she applied the warm gel and started to roll the wand towards the stomach...and there it was! The little dark grey patch I was so desperately hoping they would find. She snapped a photo and I could breathe again. It was so quick, I was already off the table by the time Ben came back from the restroom. He walked in with worry on his face and I told him everything was fine so he could breathe again too. I couldn't shake the funk I was in the rest of the day, that whole experience just wiped me out. So very thankful he is healthy.
Thursday, March 28, 2013
Cranio
Well we had the long awaited appointment with the plastic surgeon yesterday and it was less than climactic. He told us how he would be performing the surgery and the recovery time frame to expect but still no dates or even an estimate of dates. She will have one surgery and that will be to graft the hole where the Encephalocele was. As far as a reconstructive surgery to round out her head, he feels it would be more a cosmetic procedure than anything so we have decided to opt out of that one. Her head is flat in the back but it's not inhibiting brain growth which was my main concern, if anything is inhibiting brain growth it's her shunt which I will be talking to Dr. Levy about next month. So, I will break the procedure down for you with a sorry excuse for an illustration :)
He will cut the bone in a zig zag sort of pattern and bring them together over the hole so there is very little need for anything foreign or artificial. This may leave some gaps depending on how he is able to cut in which case he will use cadaver bone as children tend to reject anything artificial as they grow. Dr. Cohen said as Naysa's head grows there is a chance a gap may form again but most likely it will be small enough a second procedure won't be necessary, it will be watched closely just to be sure. The recovery is fairly quick and should everything go smoothly her hospital stay will only be 2-3 days. We see Dr. Levy April 23rd so hopefully we can get things moving along after we see him, I'd really like her to have had surgery and be recovered by August before her baby brother comes so she can enjoy and bond with him. Speaking of the girl, I think I just heard a little squeal of hers which means she is awake from her morning nap :) Gotta go play!
He will cut the bone in a zig zag sort of pattern and bring them together over the hole so there is very little need for anything foreign or artificial. This may leave some gaps depending on how he is able to cut in which case he will use cadaver bone as children tend to reject anything artificial as they grow. Dr. Cohen said as Naysa's head grows there is a chance a gap may form again but most likely it will be small enough a second procedure won't be necessary, it will be watched closely just to be sure. The recovery is fairly quick and should everything go smoothly her hospital stay will only be 2-3 days. We see Dr. Levy April 23rd so hopefully we can get things moving along after we see him, I'd really like her to have had surgery and be recovered by August before her baby brother comes so she can enjoy and bond with him. Speaking of the girl, I think I just heard a little squeal of hers which means she is awake from her morning nap :) Gotta go play!
Saturday, February 23, 2013
Oh, baby! ;)
I can't believe it's been over a month since my last entry! Things have truly been busy for this little family. We are expecting baby number two! :D My due date is September 6th but will have a scheduled c-section the week of August 9th. When I had my c-section with Naysa they did two different cuts, the one on my stomach is horizontal...the classic "bikini cut" but the one on my uterus is vertical because that was the safest way to get Naysa out without rupturing her Encephalocele. All c-sections after a vertical cut must be done at 36 weeks and cannot chance going into labor as it is life threatening to both mother and baby. I'm excited but more nervous than I would like to be, for obvious reasons. We are just hoping these next few weeks fly by for that 20 week ultrasound and they tell us everything is okay, then I can finally breathe and enjoy this pregnancy. I am very excited for the great things having a sibling will do for Naysa's development, the studies of delayed children and typical siblings are astounding! Okay, now on to what you all read this for...the bug :)
A few weeks ago we saw the other neurosurgeon at Rady's who works under Dr. Levy. I cannot even begin to describe the amount of restraint it took not to punch this man in the face, but we'll get to that in a minute. Dr. Levy recommended we see Dr. Meltzer because of Naysa's upcoming surgery to repair her Encephalocele and reshape her noggin, Dr. Meltzer has more experience grafting so I agreed to meet with him. He came in and shook my hand (I REALLY wish I could demonstrate the fake, awkward way her introduced himself) we sat down and began talking about her medical history, development, the usual. He asked if anyone had predicted where she would be developmentally and I gave the answer I always do "They have stopped hypothesizing about her future, no one has been right so far...as you can see she is alive and far from the 'vegetable' they told me she would be." To which he replied "Hm, well I believe you can predict a child's future development so I'm going to refer you to a specialist." At this point, I look at the nurse practitioner, Natalie who knows me well...after all, we've been going to this office since before Naysa was born. I look back at Dr. Meltzer and say "You can put in that referral but we won't be going." He dismissed my comment and continued to ask about her health, I told him she is in a great health and I do a lot a make sure she stays that way. What does he say next, you ask? That's wonderful, keep up the good work? Nope. He says "Yeah, she doesn't look like she's probably going to be with God anytime soon..." I'm sorry...WHAT!?! I felt my face flush and Natalie wrapped up the appointment, she knew shit was about to get real, and I love her for it. He said to follow up with him in 3 months and I laughed...I couldn't help it. He once again shook my hand with the same vibes he had walked in with and I took my girl and we left. We will stick with Dr. Levy, thank you!
Yesterday, we finally got to see our amazing neurosurgeon to go over the CT results and discuss surgery. The 3D CT was incredible, it was so strange and amazing to see my girl's head like that...I feel it everyday but to actually to see her skull and how it's built was wild. *Pictures Below* The surgery date has not been set but we will see him back in April after we see Dr. Cohen, the Craniofacial surgeon who will reconstruct her head. It will be a two part surgery, until we see Dr. Cohen I'm not sure which will come first. One will consist of closing the gap in her skull with a graft, the other will be to round out her head as it is flat in the back and doesn't allow her brain to properly grow. I will keep you updated as these dates approach :)
Now to the fun stuff :) Nay has been going to the Chiropractor for a little over a month now and I couldn't be more satisfied with the results! She tolerates tummy time much longer, is moving better and even beginning to make new sounds! She babbles like she never has before, she has regular bowel movements, sleeps better and has less spasms. I love love love our chiro and look forward to Mondays and Thursdays to help my baby feel free. She is always so relaxed and zen after an adjustment.
A few weeks ago we saw the other neurosurgeon at Rady's who works under Dr. Levy. I cannot even begin to describe the amount of restraint it took not to punch this man in the face, but we'll get to that in a minute. Dr. Levy recommended we see Dr. Meltzer because of Naysa's upcoming surgery to repair her Encephalocele and reshape her noggin, Dr. Meltzer has more experience grafting so I agreed to meet with him. He came in and shook my hand (I REALLY wish I could demonstrate the fake, awkward way her introduced himself) we sat down and began talking about her medical history, development, the usual. He asked if anyone had predicted where she would be developmentally and I gave the answer I always do "They have stopped hypothesizing about her future, no one has been right so far...as you can see she is alive and far from the 'vegetable' they told me she would be." To which he replied "Hm, well I believe you can predict a child's future development so I'm going to refer you to a specialist." At this point, I look at the nurse practitioner, Natalie who knows me well...after all, we've been going to this office since before Naysa was born. I look back at Dr. Meltzer and say "You can put in that referral but we won't be going." He dismissed my comment and continued to ask about her health, I told him she is in a great health and I do a lot a make sure she stays that way. What does he say next, you ask? That's wonderful, keep up the good work? Nope. He says "Yeah, she doesn't look like she's probably going to be with God anytime soon..." I'm sorry...WHAT!?! I felt my face flush and Natalie wrapped up the appointment, she knew shit was about to get real, and I love her for it. He said to follow up with him in 3 months and I laughed...I couldn't help it. He once again shook my hand with the same vibes he had walked in with and I took my girl and we left. We will stick with Dr. Levy, thank you!
Yesterday, we finally got to see our amazing neurosurgeon to go over the CT results and discuss surgery. The 3D CT was incredible, it was so strange and amazing to see my girl's head like that...I feel it everyday but to actually to see her skull and how it's built was wild. *Pictures Below* The surgery date has not been set but we will see him back in April after we see Dr. Cohen, the Craniofacial surgeon who will reconstruct her head. It will be a two part surgery, until we see Dr. Cohen I'm not sure which will come first. One will consist of closing the gap in her skull with a graft, the other will be to round out her head as it is flat in the back and doesn't allow her brain to properly grow. I will keep you updated as these dates approach :)
Now to the fun stuff :) Nay has been going to the Chiropractor for a little over a month now and I couldn't be more satisfied with the results! She tolerates tummy time much longer, is moving better and even beginning to make new sounds! She babbles like she never has before, she has regular bowel movements, sleeps better and has less spasms. I love love love our chiro and look forward to Mondays and Thursdays to help my baby feel free. She is always so relaxed and zen after an adjustment.
Tuesday, January 15, 2013
Things I wish I knew before becoming a SN Parent.
I love my daughter and this life as a special needs parent has taught me so much more than I ever thought it would. I've become more patient (okay, a little more) understanding, informed, strong and just about every positive trait you can think of. Sadly, I've also become more aware of the ignorance and hate towards special needs children and people, be it neurological like Naysa or Autism like a good friends incredible son. People get sent my way and come to me when they find out or meet someone whose child is SN and I love being able to help and guide. I tell them the things I wish I knew before this journey in hopes it will be of use.
1.) ADVOCATE ADVOCATE ADVOCATE!!!!
Being apart of this SN world means YOU will be the reason your child prospers or fails. You need to do your research on treatments, therapies and anything else that will give your child the best chance. Do not let doctors bully you into doing things you are not comfortable with, i.e vaccinations. If you let yourself live in the stage of denial (it's okay for a little while, we've all been there) you are wasting precious time that could have been used to help your child thrive. Remember, no one knows your child like you you do. If aren't satisfied with a therapist, doctor or nurse...get a new one! It is your right as a parent to ensure your child has the best care.
2.) Ignorance Is Everywhere & People Are Cruel.
People fear what they do not understand, so they chose to remain ignorant. It is your job to educate them. They will stare, make rude comments (most of the time unknowingly) whisper and give looks. Don't stand for it! There are a number of ways you can approach the situation depending on what was said/done and depending on your personality. I tend to be more on a blunt side, if you can believe it ;) I've actually been thinking about getting business like cards printed with her conditions, a snarky comment and the link to my blog and email address for questions. Most recently I caught a man just staring at her head and said "Isn't she beautiful? She will two in March and can guarantee she's been through a hell of a lot more than you and I combined." That leads to questions, which I am happy to answer. Majority of these instances end well and they walk away feeling enlightened. If they are just rude and don't want to listen, then kindly flip them the bird and be on your merry way with your little miracle :) If you don't educate and teach acceptance...who will?
3.) Pity Party's Are OKAY!
This isn't the life you pictured. You didn't expect to have countless doctor visits, therapies, medications to be administered at precise times. You never thought you would have to watch your child struggle to do simple tasks or work so hard to learn his ABC's. It's OKAY to feel angry, resentful, sad, scared....You've been dealt an unfair hand, it's what you do with it that matters. Three years into this life changing diagnosis and I still break down, get angry and I'm sure I always will. The key is to let out your frustrations in a healthy way...kick box, take a bath, cry it out and move on. You can't stay in this pity party funk forever, sorry friend!
4.) Do Not Compare Your Child
I know I know....easier said than done, I struggle with this myself. It's human nature to compare and breaking the habit is no easy feat. The fact is, every kiddo, neurotypical or not, is different. No one child develops the same way or rate as another. The process is just as unique as our kids. A child with Spina Bifida cannot be compared to another who has Autism, just as a preemie cannot be compared to a full term. It's just not the same and they are developing the way their bodies and minds are meant to. It's hard seeing a friends kid Naysa's age walking and talking while she still struggles with learning to crawl and sit up but I remind myself of Naysa's injuries and all that she CAN do. Focus on the positives and be thankful for the ability your baby has & remember it can ALWAYS be worse. Embrace and cherish what you have.
5.) Stay Connected To Other SN Families.
Sadly, after Naysa was born I lost a few "friends" who just didn't know how to handle my new role as a SN parent. God help them if they ever become SN parents themselves, & if they do, I will be right here to support them. Because that's what we do in the SN community. It's important to have other friends who are in similar situations, who understand what it's like as a special needs parent and the daily struggles we face. It's equally as important to keep the good friends you had pre-diagnosis. It not only gives you a healthy sense of what was and keeps you motivated, but it educates them and believe it or not....makes them better people too. My friends now think twice before judging a child throwing a tantrum because he may be on the spectrum or have a chemical imbalance, they cringe when they hear the word "retard" or "retarded" and some have even taken it upon themselves to educate others, & I love them for it. A good support group is necessary, you can't do this alone and you shouldn't have to.
1.) ADVOCATE ADVOCATE ADVOCATE!!!!
Being apart of this SN world means YOU will be the reason your child prospers or fails. You need to do your research on treatments, therapies and anything else that will give your child the best chance. Do not let doctors bully you into doing things you are not comfortable with, i.e vaccinations. If you let yourself live in the stage of denial (it's okay for a little while, we've all been there) you are wasting precious time that could have been used to help your child thrive. Remember, no one knows your child like you you do. If aren't satisfied with a therapist, doctor or nurse...get a new one! It is your right as a parent to ensure your child has the best care.
2.) Ignorance Is Everywhere & People Are Cruel.
People fear what they do not understand, so they chose to remain ignorant. It is your job to educate them. They will stare, make rude comments (most of the time unknowingly) whisper and give looks. Don't stand for it! There are a number of ways you can approach the situation depending on what was said/done and depending on your personality. I tend to be more on a blunt side, if you can believe it ;) I've actually been thinking about getting business like cards printed with her conditions, a snarky comment and the link to my blog and email address for questions. Most recently I caught a man just staring at her head and said "Isn't she beautiful? She will two in March and can guarantee she's been through a hell of a lot more than you and I combined." That leads to questions, which I am happy to answer. Majority of these instances end well and they walk away feeling enlightened. If they are just rude and don't want to listen, then kindly flip them the bird and be on your merry way with your little miracle :) If you don't educate and teach acceptance...who will?
3.) Pity Party's Are OKAY!
This isn't the life you pictured. You didn't expect to have countless doctor visits, therapies, medications to be administered at precise times. You never thought you would have to watch your child struggle to do simple tasks or work so hard to learn his ABC's. It's OKAY to feel angry, resentful, sad, scared....You've been dealt an unfair hand, it's what you do with it that matters. Three years into this life changing diagnosis and I still break down, get angry and I'm sure I always will. The key is to let out your frustrations in a healthy way...kick box, take a bath, cry it out and move on. You can't stay in this pity party funk forever, sorry friend!
4.) Do Not Compare Your Child
I know I know....easier said than done, I struggle with this myself. It's human nature to compare and breaking the habit is no easy feat. The fact is, every kiddo, neurotypical or not, is different. No one child develops the same way or rate as another. The process is just as unique as our kids. A child with Spina Bifida cannot be compared to another who has Autism, just as a preemie cannot be compared to a full term. It's just not the same and they are developing the way their bodies and minds are meant to. It's hard seeing a friends kid Naysa's age walking and talking while she still struggles with learning to crawl and sit up but I remind myself of Naysa's injuries and all that she CAN do. Focus on the positives and be thankful for the ability your baby has & remember it can ALWAYS be worse. Embrace and cherish what you have.
5.) Stay Connected To Other SN Families.
Sadly, after Naysa was born I lost a few "friends" who just didn't know how to handle my new role as a SN parent. God help them if they ever become SN parents themselves, & if they do, I will be right here to support them. Because that's what we do in the SN community. It's important to have other friends who are in similar situations, who understand what it's like as a special needs parent and the daily struggles we face. It's equally as important to keep the good friends you had pre-diagnosis. It not only gives you a healthy sense of what was and keeps you motivated, but it educates them and believe it or not....makes them better people too. My friends now think twice before judging a child throwing a tantrum because he may be on the spectrum or have a chemical imbalance, they cringe when they hear the word "retard" or "retarded" and some have even taken it upon themselves to educate others, & I love them for it. A good support group is necessary, you can't do this alone and you shouldn't have to.
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