Tuesday, July 29, 2014

A Husband's Revelation

The last time I wrote I was upset over the subjective reports from Autumn's new SLP at the clinic. I had some words, released a lot of steam, and have since moved on. I understand that I'm going to come across all different sorts of individuals who will have their "expert opinions" and whom I will question from time to time. No big deal right? Gotta keep advocating for Autumn correct? Correct. 

So this past weekend (Friday-Sunday), we went back down to the shorehouse.  The weather, wind, and water conditions made it the perfect beach day. Long story short, Autumn had a blast. She was in her glory. She barely sat still from the time we got onto the beach until we left. In these moments, she was perfect. No limitations, no worries, no autism, just her being a sweet three year old enjoying the moment. As a parent, there truly isn't any words to describe my feelings in those moments. I kept saying to myself that with the input of the sand and water, this is the "best" OT session for her. No wonder she's in love with the ocean and sand! I also kept thinking to myself that I wish we could go to the beach often even though I'll be spending my time chasing after her rather than sitting my bum in a beach chair getting some rays...and that's okay too. Above all, I kept thinking how "normal" this all feels, how happy I was that she was happy and content and isn't that what we want for our children? Yes, yes and YES! Her inner peace is my inner peace here, it's no wonder that my in-laws and husband have loved every moment on that beach for over sixty years, which only makes sense that my daughter and myself are the happiest near the ocean and vision beach. So my goal is to get down to the beach as often as I can with Autumn before the water starts to get cold in October. 

While at the shorehouse and on the beach, I was so excited to finally talk to another "special needs" mom and family who "gets it". We shared our stories and frustrations and it just felt good to talk to someone whose been through similar experiences that were currently going through. This also brings up the next "topic" that's been inspired by the husband and I hope not to offend anyone here...

So my husband and me had a very lovely conversation Sunday driving back home and while at home. We talk a lot to one another, and I mean A LOT. After all, he IS my best friend and I am his. Any ways, I shared with him how great it felt that I was able to talk to another special needs mom and all that jazz. He went on to disclose something that was harsh, which excludes family members and my online support groups and here it goes: we don't have any friends. His point was very valid. The "friends" we do have don't understand what were going through with Autumn because they don't have kids yet, live too far away or are too busy with their "normal lives" to make time for us and who can blame them? As Matt put it, "normal parents want to do normal things with their normal kids...let's face it Trish, our little family will never be normal. This IS our normal." 

Theres a lot of truth behind my husband's words. He went on to disclose how he feels isolated at times and that at the end of the day, everything falls/is on us. Just him and me. It's a pain that I can't describe. I already know that his/my ideas on what parenting was "supposed" to be like have been jaded since her diagnosis, but these feelings of isolation and loneliness are even stronger. Bottom line: having a child with special needs, and in our case, autism, has made us (especially him) feel like were living on our own secluded island. Sure, this "island" is beautiful and majestic but the water that surrounds it can be very rough, which makes it difficult for those to "reach us" or for us to "reach them" at times. It's within those waters that fear lies. The fear that keeps those whom we care about away because of the unknown. A fear that builds barriers, walls and ignorance. The obligations behind the fear consumes our lives that we often forget how calmness feels like. A fear that I hope will subside with time and eventually we won't feel so alone anymore and we'll have "visitors" from time to time and we too can get off this island once in a while when the weather is appropriate.  

So after disclosing our feelings and hearing the hurt and pain within my husband's voice, I had to remind him how grateful I am to have him next to me on this journey and that were so lucky to have each other and really, that's all that matters at the end of the day. 

On the upside, I hear that the "special needs" parents in our town are wonderful. I am sure once Autumn starts preschool I will get to meet some moms who "get it" and they will become part of my village as I will in theirs. This doesn't mean that the friends I had previously don't matter, it just means were moving in separate directions and that's okay. That's life. The true ones will still be there regardless. 

Overall, my husband's revelation is a sad reality for many special needs parents: we do feel alone and isolated, even from family and close friends, until we find our "village" and those who truly "get it". Our marriage lives tend to be put on the back burner (no date night unless it's a wedding, anniversary or a birthday-as for personal time haha, unless driving and sleeping counts) and everything in our lives revolve around our kids who need extra, extra help and support in life in hopes that maybe, just maybe, they will grow up to be self-sufficient, responsible adults without requiring extra care someday.  Sure, don't ALL parents experience the above? Yes, but it's like comparing apples and oranges: they're both fruits but entirely different in their own rites. That's the same when trying to compare typical kids and not typical kids, one just can't. 

Lastly, ending with the words of my favorite singer/songwriter Sarah McLachlan that the hubby says reminds him of us (well Autumn and me) and he couldn't be more right. "We're gonna push on through, pretty girl, Just like we always do, beautiful girl. I know the world can be cruel, pretty girl. You're gonna make it 'cause you've got love on your side. One thing I know is it will get better." 

Yup, Sarah, I agree. It will. It has to because we do have love on our side. You're that love husband. Remember that. Forever and for always.  



My true loves (missing Leah here). 


Tuesday, July 22, 2014

What IS Forever?

So yesterday I updated you all on how fantastic Autumn has been doing and on my new job opportunity working for Early Intervention services once she starts school. I was feeling FANTASTIC then poof, that changed as soon as I started to read her evaluations from her new SLP and OT. 

Within the past month, Autumn has had three discharge summaries, two Battelle evals, one OT eval for school, two evals at the clinic, an IEP and an eval for the VB-MAPP (verbal-behavioral milestones assessment performance program). Ten meetings that I've had to disclose the same words over and over again. Ten meetings where her "limitations" have been noted. Ten meetings to remind me, shit, this is real. Her Autism IS real. 

I know that my posts lately have been filled with rainbows and butterflies prancing around in the glorious sunlight, depicting hope and remaining focused on "the good" within my daughter. Not on just the negative aspects or the realities that could quite possibly be "her forever", "our forever".  It's a feeling that I've chosen to dominate my mind but the other still lingers there so quietly and that, my friends, is today's focus.

Now reading the reports, always subjective to an extent, made me very upset because it listed her social skills at being of a six month old. Wait, six month olds have social skills? I just assumed most babies that age were just learning how to sit up and coo at this point. I am extremely pissed by this and will be saying something today when we go back. To make a judgment off of five minutes of her going from toy to toy because she's excited, which I already mentioned prior to our arrival, just ticked me off. She scored the highest in social/emotional at the school and within the ELAP so explain this to me? Hopefully a typo error. I'll just approach it like that... 
*** UPDATE: I did confront her SLP today to ask her where/how she determined her findings and I think I probably made her cry...totally not my intention. Just didn't understand how her scores elsewhere were much more higher yet hers was so low. I told her everything I've mentioned here and I think and hope she agreed and was empathetic and understanding about. We will see how next week goes and if I still feel similar, then I will look at another place to take Autumn for speech (theres other things that bother me but I'm choosing not to mention here).

I know that I should just take their wordings with a grain of salt and keep moving forward like I always do, but I can't help but wonder AND worry about Autumn's future within this moment when I promised myself I wouldn't try to think too far ahead. The realities are there. Dang it. I seriously thought I'd be immune to these feelings, but I'm not. Watching some Autism documentaries this past week also amplified some of my concerns. I guess these "worries" have to keep me grounded and not so much in la-la land hoping that she is going to truly climb out that window and be a typical child someday, even though anything is possible (here I go being that internal optimist again). It also has made me realize, and maybe it's just the feelings of being burned out from evals and meetings this past month, how I dislike this all and just wish we had a normal, uneventful life. Not this running around all over the place, hearing everyone's subjective opinions about my child and feeling like you and you alone are the only one in the battlefield, advocating for your child and doing the best you can with minimal support.

I will tell you all this much. All of these opinions and subjections surely knock one off their horse from thinking that their kid "is the best" in life. Man oh man, having a special needs child of any sort really does ground parents and teaches us to focus on what our child can do, even though what they're not doing is a constant discussion and motivator. So I add to my list of "what my autistic child has taught me" and this probably summarizes this entire post/rant: It sucks, and yes I said sucks, hearing about how "un-perfect" my child is and how she has these so-called limitations and how she isn't "the best" bc she is "special" but "special" because of those limitations. I hate being critiqued. I hate hearing where I need to improve as a parent mainly because I'm not her only parent and feel that the other one gets off square cleaned. I hate it bc I don't like criticism and never had and feel like it's "all on me". It's a huge pill that I choke on constantly and this, my friends, is the biggest dilmemna that I've had to overcome or try my best to not take so personally. This, my friends, is MY biggest struggle that I fight daily and will continue to fight. I am sure I will just lol at it all and grow numb to it as I hear more and more about "improvements" Yada Yada Yada...

Now as for Autumn's forever? Who knows. Like I said previously, I can't think about next week, let alone "her future", which isn't probably very smart but it's my way of coping with the present moment. Even if this sounds naive and after my ranting and stating the annoyances above, I'm going to go back to thinking that everything is "rainbows and butterflies" today. I'm not going to allow the dark thoughts consume me or make me feel like a crappy parent. I'm not going to allow subjections rule my outlook on my beautiful daughter, despite what they think or say. I'm going to choose to see differently and even if it pisses people off that I choose hope. To hell with them as I smile and try my best to enjoy Autumn being Autumn. 

Here's Autumn being Autumn squashed between her teddy bear and chair:

Funny way to conclude. Yesterday were Autumn's first sessions at the clinic. Her OT comes out and says, "goodness, I don't know how mom you do it bc Autumn is intense within needing those deep pressure and lots of input." Yup, that's my kid. Hopefully the more and more she becomes regulated, the less input she'll need. However, I'm certain the hugs won't stop. 😉 



Saturday, July 19, 2014

The Week In Review: Awesome!

I suppose the title says it all and you all can stop reading (just kidding), but seriously, it was an awesome week. Busy, but awesome. 

Let me break it all down starting with her clinic evals. Autumn was her usual hyperactive self at the clinic because everything was fun and new. Her new OT and SLP seem lovely. It's going to take me a while to adapt to them but I really do like them and what they will be able to offer Autumn. They both determined that she could benefit from 2x a week speech and OT. I agree, however because of summer schedules, we might only be able to get in on service once a week and the other twice. They said they'd like to have her for OT and then speech back to back. I prefer this as well bc I personally don't want to be running her around all week if she can have the sessions back to back. She did this while in EI so I am sure she can handle it at the clinic. We start Monday with services. 

Second, the IEP. As my Facebook page updates had indicated, all went exceptionally well. Very pleased and grateful for the CST we do have here in my township. Overall, we agreed to have her be placed in a self-contained class. It is the best class for her that will have four aides and the most one to one attention that she requires. She'll go to the integrated preschool class for snack time and other activities as she gets older. She will be going half-days, five days a week. She was offered full days but I declined right now because I want to see how she adjusts to the school setting. She will be going to an elementary school so this is going to be an entirely different world for her. I also declined bus services. I want to be able to pick her up and drop her off on a daily basis. Until she's able to express her day to me, I will not be putting her on a bus yet. Someday yes, but not at three. She will also have OT and Speech, both 2x a week, individual for now until she is able to work within a group environment. They will provide me with daily progress notes, a speech and OT book so that I know what's she's doing and how I can carry over what she's learning while she's home. Every question and accommodation I wanted she's getting. I'm happy with that. Overall, the meeting wasn't as intimidating or overwhelming as I suspected. Luckily, Autumn's OT from EI was also present at the meeting bc she will be her OT at the school. Her and I spoke for a good 15 minutes privately after the meeting and it was nice hearing her comments and suggestions moving forward. 

Third, Autumns three year wellness visit went well. She's 40 inches tall and 38 pounds and is growing perfectly according to her pediatrician. She also received her MMR at this appointment and guess what, she hasn't melted yet. Still a jumping bean, silly little girl. The pediatrician and me had a good talk about Autumn's autism and him believing she will overcome some of the challenges associated with Autism due to EI and us being proactive by getting her extra therapies and the services she needs. He said she's probably on the mild-moderate level of autism but to not worry too much into it because he too has noticed a great change in her over the past year. He also stated what the CST stated, in a year, especially two years from now she's going to be an entirely different kid. I suspect this too because she'll be older (duh) but the concerns I've had will not be so heavy in the future. Still, I plan to take things daily and embrace the little things she does now. I also registered her for pre-k3 I can't believe Autumn is going to school this fall! I will be a total emotional wreck but I trust that she'll be in excellent hands. 

Lastly, and this one's about me. Starting in September (because it's going to take that long to do my trainings and paperwork), I'm going to be working for an agency that's contracted throughout the state to provide Early Intervention services. Thus, this mama bear will be working for EI! I will be providing behavioral intervention services and once I complete other trainings, I'll be writing the programs and behavioral plans for families. It's definitely not the path I envisioned when I started grad school, but because of everything I've been going through with Autumn, this new area/journey in life has inspired a shift career-wise. Sure, I want to still try to obtain my LPC but right now, I want to focus on helping families and children affected by Autism. I want to be an Autism advocate in regards to early detection and helping to implement services (not preventing or finding a cure) as well as focusing on parental support since this area is seriously lacking (especially up in my neck of the woods). Who knew that having my Autumn would be a game-changer in so many different areas within my life.  Sadly, I will make more money doing this than I do as an LAC. I couldn't be happier with this new job opportunity and my decision to work for EI. So, once Autumn starts school, I'll work with families during that time even if it's one family per day. I'm happy with this decision. Plus, we need the extra money so it's time for me to do this. Perfect timing I suppose. Talk about fate.  

So there you all have it. What an excellent week. 



Looking all grown up with her hair pulled back

Monday, July 14, 2014

The Silver-Linings of Autism

It's been a few weeks since I posted last. We had a week long family vacation spending half the time at home relaxing and having Autumn's birthday party and then the other half was spent down at the shore. Loved seeing Belle in the water. She enjoyed every minute of the beach. She better; it's in her blood. Now were back home again and it's filled with a week full of appointments and evals. Fun stuff. I received her multidisciplinary report in the mail from the CST and have read it several times and started to write another "poor me, poor Autumn" type of post but realized, "wait, nah, I'm not going to go there."

So despite all of the negatives associated with Autumn's Autism diagnosis, and believe me, there's a lot, I'm going to take some time to reflect on the silver lining points of it all.  Nothing is in particular order here so bare with me. 

1. Being a parent of a child with Autism has humbled me. Yes it has. I have learned to appreciate what my child CAN do and what her potential is capable of being. Sure, I've mentioned plenty of times her limitations and how they're stuffed down my throat, but I'm trying my best to choose to reflect on how far she's come and how much she's achieved rather than focus on her weaknesses. This brings me to my next point:

2. Being a parent of a child with Autism has also knocked me off my pedestal that I have to "do everything" for my child, all on my own. That's been my entire life: Trish never ever EVER asked for help. I did everything myself. Well not anymore. It's taken me the entire length of Autumn being in EI that I realized I can't continue to feel like I'm the only person to help Autumn. I can't do this alone. It takes a village to raise a child right? Right. The path I was on was making me a miserable person on the brink of depression and turning me into someone I know I'm not. Thus:

3. Having a child with Autism has taught me that there was NOTHING I did wrong, this isn't about me. I'm learning to let go of the guilt of feeling like I somehow caused her autism yet that sounds like the most selfish thing a person could say and what a burden to continue to carry. No wonder I was miserable! I've learned to stop thinking I caused her autism and to stop wasting time wondering what did. That shouldn't matter anymore. She's here and she is whom she is. I've learned to let it go. 

4. Having a child with autism has seriously made me focus on the here and now rather than the what ifs and the future. I was such a future-planning person. Not anymore. I can't think about Autumn in five or ten years from now, heck I can't even think about what our lives will look like next week. If I do, it brings out my anxiety and unnecessary worries and wasted time that I should be spending enjoying the moment. Yes, autism has taught me to enjoy the moment! 

5. Having a child with Autism has seriously made me appreciate all of the things my daughter does and to not take anything she does for granted, especially her words. As many of you know, I'm a talker. I love to talk! It's no wonder why I became a therapist. So having a child with a significant speech delay hasn't been easy because we've struggled in the communication department. However, as the words come, I sit with anticipation listening to that small voice. A voice I will never take for granted as I can only hope that someday I will be able to tell you all "this kid won't shut up"! I mean this about all of the things Autumn will do someday. I say do because of:

6. Having a child with Autism has broadened my faith in God. Sure I have my "poor me, why her, why us" moments but when I take a deep breath, step back and look at the entire picture, I see hope and potential. Sounds cheesy perhaps but that's how I have to get through this. The internal optimist always hoping things will get better and they will. I truly believe God only gives us what we can handle and he must of thought I can handle being a mom of a child with special needs. If that's my struggle in life, life can't be too bad. 

7. Having a child with Autism has possibly spared me from some of the "typical" struggles my friends will go through with their kids. The competitive sports crap, the girl drama, all of that jazz, I have a feeling we will only see minimal of that in Autumn's life and hey, that's fine by me. 

8. Having a child with Autism can be pretty cool at times. Yes it is. Want to know why? Autumn is very content with simplicity. Her routine, her books, her shows, just running and playing outside or on the beach is enough for her. She doesn't need constant stimulation that will make her go into sensory overload. She also doesn't need me 24/7 to entertain her every moment. She's predictable. I know what she wants and when she wants it and I know what makes her tick. So in a sense, parenting her is easy, but can be overwhelming because I don't get much "me" time alone, but that too will be coming soon enough. Also, because she's constantly moving, so am I. Who needs a gym when I have Autumn around. Somedays I want her to just sit and play but I am glad she likes to move. It keeps me going as well. 

9. As strange as this may sound, having a child with autism has made me love and appreciate my spouse even more. Long story short. Matt and I got married very young (he was 23 I was 24). We were college sweethearts and best friends. We knew when we were 19/20 we wanted to get married to one another. Not many people approved of our engagement bc they thought we were "too young" and didn't date enough people to know whether this was the right decision. Well we didn't care what they thought and got married anyway. We enjoyed our stress-free lives doing everything twenty-something yuppies do from traveling to buying our first home to degrees to enjoying life. It was awesome! Married seven years now and times haven't been easy, especially once we became parents. I hear the divorce rate is higher for special needs parents and I understand why. No alone time and focusing on the kids leaves couples exhausted and they put themselves last. Okay, so my point here is this: despite how busy and crazy our lives have been, the one thing that remains sane is my love for him. Even though I feel alone at times, I know he's right beside me. He's the only other person who gets this life we live because he's living it too. We are in this together, hand in hand becuse that's "true love" and Matt is and will continue to be my partner through this all. 

10. Overall, having a child with Autism has made me let go of everything I once thought about being a parent and to embrace the life I'm currently living. To try my best to stop complaining and feeling sorry for myself because at the end of the day, this is a pretty good life. I made the decision to become a mother regardless of my child's challenges and I'm trying my best to enjoy this journey as the scenery changes every day. It's an ongoing battle that I'm hoping the internal optimist within me will win. 

Yes, all of the above sounds so lolly gaggy, spinning around in circles on top of a mountain, too positive and possibility superficial, but I don't care if it does. This is me being real. I can either focus on all of the crap, because there is always going to be crap, or share the love. I chose to share the love and to conclude with more love:

Lastly, to my sweet Autumn: I love when you make crow sounds when you get excited. I love how your face lights up when you look at me after saying a word. I love how you squeeze me and find comfort in my arms whenever you need "pressure" to keep your sensories in check. I love how fast you run even though you never sit still. I love watching you flip through your books and recite the words from your memory. I love how eager you are to learn something new and to try your best to complete a task even though you sometimes get frustrated. I love how you'll say random words and make me giggle and then you laugh too. I love that you're talking more and saying "I love you" to daddy and me when we say it to you first. I love how content you seem when your eating your pasta or when you're on the beach rolling around in the sand. I love the way you grab my hand to  "walk" and you rock from side to side when you're waiting for your milk or juice. I love that you still want me to hold you and enjoy cuddles while eating your popcorn. I love that when I leave the room you cry because you miss me too. I love to watch you when your in the car and your moving along to the music. I love watching you when your sleeping because you look like an angel. I love it when you smile because it lightens my world. I love so many things about you there's too many to list here. Above all, I love you for you. 
(Autumn on the beach, she loved it)