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.  

Xoxo,

Trish

My true loves (missing Leah here). 

 

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. 😉 

Xoxo,

Trish 

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. 

Xoxo,

Trish 

Looking all grown up with her hair pulled back

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) 

XOXO,

Trish 

Saying Goodbye to EI

Happy Monday All!

It's been an insanely crazy busy month with finally an end in sight soon enough (for a little while at least). I started to write a "poor me" depressing post yesterday but decided to stop myself because despite a lot of the negative things I've been experiencing lately, there is some good.

Miss Autumn belle has been improving speech-wise but her sensory issues seem to be getting more noticeable whenever were out in public and it doesn't help that she's up when the sun rises and doesn't fall asleep until it's dark out so we've been experiencing long days here. The only perk is taking her into the pool. It's where we both feel at ease and sleep more soundly at night after a day of water and sun. 

In addition, this is Belle's final week of EI. She ends on Wednesday and then it's vacation/birthday celebration time. It's also very bitter sweet and it hit me like a ton of bricks while I was driving last week. I can't believe EI is going to be over?! When did this happen? I know I've written about my EI experiences before and love that we've had such a passionate and loving team of therapists who continued to stay consistent and with us even during the move. They were there when we got her diagnosis. They were there during those long winter months when nothing seemed to be going right. They were our light out of this dark facade. Her therapists commitment and perseverance has paid off. We went to have another eval at the school last week and the case manager and Autumn's new speech therapist (her school one), couldn't get over how affectionate and social she was being. They had even questioned her diagnosis for a moment until a routine/OCD tantrum came into play. The case manager stated that they rarely see such jumps in development within a year like Autumn exhibited. I know this is all in part to her therapists working so hard with helping her gain these milestones. Like I've said before, who knows where Autumn would be today if I never got EI involved. Sure, I'm positive I would've helped her as much as I know how, but those extra tools and techniques have transformed this family. I'm going to miss them so much. Thank goodness for cell phones and being close enough to visit.

So what's next? In two weeks, miss Belle has her evals for speech and OT at the clinic and then the IEP with the school district. It's hard to believe that only a few months ago, I was thinking of opting out completely regarding her starting school this fall, but I've realized that it would be doing her a disservice and this is not about me or something personal I've done. I don't see or hear my spouse or other family members taking Autumn's limitations personally like I've done, so why continue to try to be superwoman when I know realistically, I'm human and far from being the perfect mom. Plus, it's about doing what's best for my daughter even if that makes me feel vulnerable and giving in to continued additional help and support. There's nothing wrong with this and I realize it now. If I don't do this for her, who will? So she will begin school half-time this fall. Depending on how well she does and thrives, we may send her full-time half year. Again, it's a wait and see decision. At the clinic, she will receive therapies twice a week: two sessions a day so we will be busy come fall.

With the end of EI also surfaces a lot of emotions that I've been experiencing. The "I can't believe a year had gone by" feelings of bittersweetness. It hurts because part of me is excited to see the year go and Autumn turn three but then another part of me feels like I didn't truly enjoy her being two because of how busy and focused I've been on getting her therapies to better her skills, among other things. It's a double-edged sword for sure. I know that I need to just cut my losses, be proud of how far she's come, and enjoy each day within the moment and that's my goal this summer for the both of us. 

Over the next few weeks I'm going to be busy but will try to update my page and try my best to write here. After this past year, some down time is long overdue. 

Xoxo,

Trish 

This is Autumn's birthday crown that her DI does for each of her kids who are aging out. Can't believe it's complete. Bittersweet for sure! My baby is graduating EI on Wednesday! 

Landslides

Good Morning and Happy "Hump" Day to all! The past few weeks have been extremely busy and I don't see them slowing down until July 3rd, which is Belle's last day of EI (cry). I'm looking forward to a little break from her therapies so that we, as a family, can enjoy time together as well as celebrating her third birthday. However, once that week is up, it's back to evals with the clinic we will be taking her to for OT/Speech and then the IEP at the school (can't wait). 

Anywho, Autumn has been doing stellar. She recently had her discharge evals through EI and has made tremendous progress. For instance, her expressive language went up from 6-9 months a year ago to 24-27 months! Was I doing a happy dance when I heard that? You betcha I was!! She did well in all of the other areas of development, but we still need to work on the reciprocal piece of language and her sensory issues, which can limit her ability to focus and stay on task.

The eval at the school went well. It was short (thank goodness) and the school psychologist was efficient. She didn't do a lot of things bc of non-compliance, which we figure would occur. I must add that I love that her EI team all checked in with me to see how Autumn made out. As much as I'm looking forward to EI ending so that I can have some free time, I'm going to miss her therapists dearly. They've been like family to us. I'm sure they will miss Autumn as well, but it's time to move forward, which brings me to my "topic of conversation" today that I've been meaning to share for weeks now.

This is the time of year of celebration. It's graduation mode everywhere, which is a sign of growing up and moving on with life. Any who, I know Autumn isn't "graduating" per say, from school, but she's moving on from EI and this is where I get emotional. So you all know how torn I've been about sending her to school this fall. How I've feared the unknown and worry about how she will adjust without her mama bird there holding her hand through the way. My emotions have been raw and have challenged me in different lights, but deep down, I know what I have to do in order to give my daughter the best chance in life. I was listening to the radio as I normally do on my excursions outside of the home and one of my favorite songs came on the radio. As a child I never really took the time to understand the song and what it could mean to me personally, but when I heard it this day, it hit me as if I was sucker punched into my stomach.

This line in particular: "I've been afraid of changing because I've built my life around you." 

Isn't that the truth. For the past three years of my daughter's life, every single decision I've had to make has had Autumn in mind from taking a shower to seeing a client, Autumn's needs has always come first. Just like many parents, I too find myself neglecting me in order to give her my all. Will this stop? Probably not, but just listening to this song made me stop into my tracks and realize that as Ms. Stevie Nicks says, "Time makes you bolder, children get older and I'm getting older too". 

It was in those sobbing moments that I knew it's time to start letting her go. Meaning letting her go to school on her own and putting my trust into God's hands that everything will be okay. It was also in those moments that I realized I need to also start living for me too. Whether that's gardening, exercising, getting more in touch with my spiritual side or working again as a therapist, I know that I too need to stop beating myself up with guilt over this decision to send her to school and over my decision to want to do something for me for a change (work again). 

I firmly believe those "aha" moments happen when we need them the most. So as everyone celebrates their child or children moving on up this June (whether in age, school, life, etc.), remember to go through your own emotions, let it all out, take a deep breath, and be proud of this moment. As difficult and scary the unknown is for us all, if you believe, God will see you through it.

Xoxo,

Trish 

Here's a picture collage of Autumn: newborn, one year, two years, and just recent. Darn they grow way too fast! Hate it but love it (is that even possible?).

Breaking Down the Autism Diagnosis

Good morning all. I hope everyone is doing well. I was sitting down enjoying my "super mom" coffee this am and realized that I've never written a post on why Autumn was diagnosed with Autism. Sure, I've disclosed bits and pieces of information, but haven't shared the "entire picture". 

So I've decided to share the "entire picture" using the DSM-5 diagnostic criteria as a guideline and then break down in BOLD what Autumn's symptoms that caused alarm and a diagnosis. Please remember that each child whose on the spectrum will experience different symptoms and they will vary in level of severity.  I've studied the DSM and had to use it when I worked with my clients. However, I'm no expert or doctor. Just a therapist turned mom whose acting primary role is of being a mother. So if those of you are reading this and saying, "my child does xyz...maybe they too are autistic.," go talk to your child's pediatrician and get a referral to see a developmental pediatrician and pediatric neurologist. They are the experts. What I share here is about my child and only about her. Use as a guideline if you wish or a tool to help you understand more about Autism, but don't take my words as being absolute. Talk to your doctors. Also, those of you who follow this blog know how much I love and adore my daughter. I'm not trying to highlight her negative behaviors because some of her autistic traits are positive (yes I said that). I just want to open the doorways into what Autism looks like for one child, my child. That is all and I hope that after some of you read this, you will walk away with more knowledge. 

Okay now that's out. Here we go, and again, everything is from the latest DSM-5 (Diagnostic and Statistical Method of Mental Disorders, Fifth Edition, 2013). 

Autism Spectrum Disorder (299.00)

A.      Persistent deficits in social communication and social interaction across multiple contexts, as manifested by the following, currently or by history (examples are illustrative, not exhaustive, see text):

1.       Deficits in social-emotional reciprocity, ranging, for example, from abnormal social approach and failure of normal back-and-forth conversation; to reduced sharing of interests, emotions, or affect; to failure to initiate or respond to social interactions.

Autumn's expressive language is around 18 months maybe a little higher. She doesn't "talk" in conversation. She only speaks when she needs something (for example: "I want juice please"). She can recite all of her letters, numbers, shapes and colors. She is labeling what seems to be everything, but again we do not have any real back and forth conversation, but we've been working on this daily. For instance, doesn't ask how I am or says things like "baby is happy" or "daddy is sad, I help daddy feel better." Which, at her age, she should say by now. She should be more "in tune" to other peoples feelings and the world surrounding her. The best way to put this is I feel as if she doesn't understand what others think or feel. She lacks the empathy where she can't relate or read others emotions. If I cry, she doesn't understand. She also doesn't smile back at me when I smile at her unless I tickle her. Basically, sometimes I feel like I'm seen as a tool to get her what she needs. 

2.       Deficits in nonverbal communicative behaviors used for social interaction, ranging, for example, from poorly integrated verbal and nonverbal communication; to abnormalities in eye contact and body language or deficits in understanding and use of gestures; to a total lack of facial expressions and nonverbal communication.

Autumn still struggles with eye contact and it takes several times for her to respond when I call her name. Her receptive and expressive speech (again) is lower than it should be. She still has difficulty understanding directions but has improved somewhat. She will also scream and make strange sounds like crow sounds or will say the same words/sentence in order again and again. We believe the screaming/crowing is a vocal stim. This is something were currently trying to work on decreasing. Also, one can have excellent expressive language, meaning they can speak/talk well, but they have a difficult time engaging in conversations or become lost in their own words. So lack of speech doesn't always mean autism. There are some extremely talkative kids who have Autism because of the above (debunking myths here).

3.       Deficits in developing, maintaining, and understanding relationships, ranging, for example, from difficulties adjusting behavior to suit various social contexts; to difficulties in sharing imaginative play or in making friends; to absence of interest in peers.

This is where Autumn is trying but there's some trouble mainly bc of the lack of words used to communicate. She will say hello to the little kids and grab their hand to play, but when they try to talk back to her to engage in a conversation, Autumn can't say anything else and "looses" them. It's one of the most heartbreaking things to watch. She does great otherwise, but mainly prefers to play alone after trying to engage with the kids. Her make believe play is great for her age. However, she doesn't like it whenever myself or a therapist tries to play and take turns. She will scream and fight her way out of it, but eventually she'll come along. Sharing and turn taking has been an ongoing work in progress and this has improved immensely over the last few months, but still a struggle at times. 

B.      Restricted, repetitive patterns of behavior, interests, or activities, as manifested by at least two of the following, currently or by history (examples are illustrative, not exhaustive; see text):

1.       Stereotyped or repetitive motor movements, use of objects, or speech (e.g., simple motor stereotypies, lining up toys or flipping objects, echolalia, idiosyncratic phrases).

As stated in the first section, she does become fixated on certain words and sounds. We don't believe she has echolalia, but tends to repeat the last thing said at times. Still not enough for her therapists and myself to be alarmed. She will line things up (lining up isn't always an indicator of autism-this is the organizational piece that I love about her) she flaps her hands whenever she gets excited and has verbal stims (she currently crows). 

2.       Insistence on sameness, inflexible adherence to routines, or ritualized patterns or verbal nonverbal behavior (e.g., extreme distress at small changes, difficulties with transitions, rigid thinking patterns, greeting rituals, need to take same route or eat food every day).

My Autumn Belle is big on routine and I mean, HUGE on routine and "sameness" as sameness is her comfort. However, she does adjust pretty well when she's not home and at her Memas house or when were on vacation. Maybe it's because I'm with her or she's with her Mema whom she also loves and trusts and she still gets the typical things that are part of her routine? I'm going to assume so. Another factor mentioned above is her difficulty to adjusting to new things. This is typical anytime one of her therapists introduces something new. Same with me here at home. She will scream and cry and throw herself on the floor whenever we try a new activity. This doesn't last too long because we don't allow this behavior for too long. After a few minutes, she comes along and will participate, but her "non-compliance" is one of our biggest concerns and the only reason why we implemented ABA therapy this past winter to kick this behavior in the bud. Anything new, "no thanks" in her world. This goes for foods (chicken and applesauce almost every day) and new people as well, which is why she scored extremely low in the Battelle. She didn't want to do the "work" bc she didn't "know" the therapist administering the test. However, on the upside, she has been saying hello to new people whenever were out. This is a huge and I mean HUGE milestone in our lives. Usually she says hi and is back to being fixated on something  else or will repeatably say "hi" over and over while the person tries to engage in conversation with her. A work in progress.

3.       Highly restricted, fixated interests that are abnormal in intensity or focus (e.g, strong attachment to or preoccupation with unusual objects, excessively circumscribed or perseverative interest).

To be honest, I am not sure if she has any real attachment to anything other than her momma lol. She currently is preoccupied with wanting to watch Frozen every night before bed. It's become her bedtime routine but not sure if that counts. 

4.       Hyper- or hyporeactivity to sensory input or unusual interests in sensory aspects of the environment (e.g., apparent indifference to pain/temperature, adverse response to specific sounds or textures, excessive smelling or touching of objects, visual fascination with lights or movement).

Yes, yes and yes. Autumn also has sensory processing disorder, but that's just another symptom of her autism and I can write an entire post on this topic alone. She needs constant pressure/deep massages. She seems to be hyposensitive when it pertains to pain or water temperatures (bath water too hot or too cold or food too hot and she doesn't say anything-of course I cool it down and take her out of the tub immediately knowing if the temp isn't right). She has light sensitivity. Hates loud sounds or people talking at the same time. For example, in mickeymouse club house, she screams when they say "oh toodles". I guess she's filtering out the sound. She is constantly moving and going. Nonstop. Rarely naps. Has poor coordination meaning she walks over everything and trips easily. Some of these symptoms mimic ADHD but she's too young to be diagnosed with it. For now, we have her on a sensory diet where we jump with her, rock her and do other activities to help "calm her". Again, a lot to say here, but the above are the main concerns.   

Specify current severity:

    Severity is based on social communication impairments and restricted, repetitive patterns of behavior(see Table 2).

C.      Symptoms must be present in the early developmental period (but may not become fully manifest until social demands exceed limited capacities, or may be masked by learned strategies in later life).

        I started to see symptoms when she was about 18 months. She also lost words and this was probably the biggest indicator something wasn't "right". The "Prelude" post breaks down this in more details.

D.      Symptoms cause clinically significant impairment in social, occupational, or other important areas of current functioning.

     Yes, I would say this has in more ways than one: social (her communication deficits), occupational (the sensory processing disorder), adaptive/self-help, etc. The communication and sensory issues are the biggest concerns. Everything else is relatively mild. 

E.       These disturbances are not better explained by intellectual disability (intellectual developmental disorder) or global developmental delay. Intellectual disability and autism spectrum disorder frequently co-occur; to make comorbid diagnoses of autism spectrum disorder and intellectual disability, social communication should be below that expected for general developmental level.

No global developmental delay bc of multiple areas of delays. 

***So I hope that my personal breakdown of what Autism looks like for us helps you understand a little more about the spectrum regarding Autumn. I didn't list every little thing here because this has already turned into a novel. Autumn has made tremendous strides with EI therapies and us working with her in decreasing the "non-compliant" behaviors. Her symptoms may get better or worse with age, but the above is regarding today. Lots of love and hope. As in her favorite movie and song (changing the lyrics): "The stims never bothered me anyway". 

Xoxo,

Trish

The "non-compliance" above. 

The pressure below (looks like a normal hug, but this is usually every few minutes and she pushes her lips against my cheek and squeezes my neck so hard that I feel like she is strangling me. She also likes to wrap her arms around me from my back and climb on me like a monkey and will make funny sounds when she does this. Looks so precious and believe me, it can be, but every few minutes it can become exhausting and painful for me bc she's pulling my hair and my skin.)

Her playing with the water table bc she's obsessed with water (not sure if this is truly a good thing, her love for water, it scares me a bit, I'll admit). She is "fearless" and a bolter so this is a fear I have, which is why I feel like I have to watch her 24/7. Another ongoing fear for many parents of children on the spectrum, as most of our kids love potentially dangerous things and are attracted to water and wandering. 

I love this girl!