How to Make Sandwiches and Other Absurdities

Thursday my son announced that he would be moving into the dorms several days earlier than planned. He received an email that day from university housing saying that “students with disabilities” would move in on the 15th. I couldn’t wrap my head around this piece of news. We’ve been mentally preparing for the big day for months. This really threw me off my game. When I asked to see the email, my heart sank. The woman in charge of disability resources at the university is the same woman who thwarted our efforts to get our young son the help he needed in grade school. She’s made life difficult for many families over the years, including ours.

My son was too young to know any of this at the time and there is no reason to share it with him now as he leaves home for the first time. He’s blissfully unaware of the drama she put us through and will have no such bias when he meets with her and the other students this Friday. Seeing her name in the email, however flooded me with painful memories and the trauma of those grade school years. As my brilliant young man joins the ranks of other college students this fall, it’s a relief to know that he can do more than make a sandwich.

Here’s our story

The End: The part of a story where you tie up the loose ends, bringing the tale to a satisfying conclusion. Anyone  familiar with special education knows that the end is only as good as your next Individualized Education Plan known as an IEP.

IEP’s are not the escapism novel you long to read but instead a series of required readings whose endings leave you feeling flat and defeated. Our oldest son has Asperger’s Syndrome, an Autism Spectrum Disorder. It took an ever-increasing series of professionals’ years to define the perplexing symptoms. It was a long and painful journey.

The Flashback is the chapter where we learn a little about our protagonist. Though we bought our home a year before having kids, a good school district figured prominently on our list of general requirements. We planned to start a family and we wanted to stay put while we raised them.

Life rarely plays out like the plot you’ve been thickening, and the first draft was no exception. My precious first-born was strong but fussy. He struggled to nurse and wore a serious expression a lot of the time. He cried upon waking and in the early toddler years he could tantrum for an hour without stopping. It was exhausting and frightening too, but the pediatrician and well-meaning in-laws assured us this was all perfectly normal. My son walked at a year, spoke at two, and generally hit the typical milestones on schedule. He started pre-school at age 3 for a few hours a day at a warm and loving Montessori school. Separation was painful for him every day; it never improved as all the experts predicted. His intense behavior continued, but because he had a younger brother at home, everyone said that was the obvious source of his displeasure.

He started hiding all his underwear and socks in a drawer, assuming we wouldn’t take him to school without them. He became increasingly resistant to anything outside his small comfort zone.

We eventually sought the help of a pediatric psychologist. His first diagnosis was Oppositional Defiance Disorder or ODD, coupled with sensory integration dysfunction. From there we saw an education specialist who diagnosed his suspected auditory processing disorder with intense hyperacusis along with the sensory issues and possibly neurological tics. I would soon be hauling out my dictionary in the hopes of understanding such terms as vestibular system and proprioception. I have a three-inch binder, plump with reports from psychologists, neurologists, neuro-psychologists and psychiatrists; pediatric occupational therapists, a speech pathologist, an audiologist and a woman who specializes in neurofeedback. One doctor said he had ADHD, and then depression coupled with anxiety. Neurological tics were initially ruled out; later ruled back in. The audiologist discovered that our precious boy fell into the abnormal range in four areas of auditory processing. He sailed through his Kindergarten hearing test, which we later learned simply proved he could hear. He couldn’t process the auditory input, but his ears worked fine. By grade three we enrolled him in our public school. His brilliant and dedicated young teacher actually came to our home to meet us to help with our son’s difficult transition. We were hopeful and grateful but filled with trepidation all the same. Districts have 56 days to complete an evaluation and to offer an IEP. Although we approached the district in late spring, they told us nothing would happen until at least October. Our son spent nearly two months in a new school before services could be offered. After the school’s testing, they only offered him speech.

He had a successful third grade year, but paced alone on the pavement during lunch and recess for both semesters, ending the year as he started it without a single friend. Fourth grade was harder as we continued to seek solutions to make his world work a little better and by fifth grade it was nearly impossible to get him into the car to go to school. I poured over a resource book of schools in our area and we interviewed and observed at several private ones. It was clear none of them would work. His doctor kept experimenting with various anti-anxiety medications, including one that elevated his triglycerides and brought about a significant weight gain. We started neuro-feedback, revisited the neurologist at the request of his doctor and agonized over the misery that was his day-to-day life. I was now carrying my cell phone wherever I went, anticipating the dreaded calls from the principal. Our troubled boy had started to run out of the classroom and hide. When the principal caught up with him, he told her he would have run home if his conscience had let him. Then he told her he wished he was dead.

At last, we found the Newton Program at Pine Hill. Although his doctor still didn’t think our son was on the spectrum, he suggested we take a look. We loved what we saw and were anxious to have our son ‘shadow’ for a few hours. The director of the program said ‘bring him to me; I’ll be able to tell you in five minutes if he’ll be successful here.’  So we did.  We went for a two hours trial run and within the first twenty minutes my sweet boy came up to me and said “Mom, I want to go to school here.”  I will never forget that moment. We finally found a home!

Good stories need conflict. We had that in spades.

We called an emergency IEP meeting and requested placement in the Newton Program. I naively assumed the district would be happy to have us off their hands and safely in a program that could adequately meet his needs. The woman in charge of special education in our district told me disparagingly that they would never place a child in ‘that program’ and that if all we wanted was for our son to come out ‘knowing how to make sandwiches’ then we could go right ahead. We were absolutely stunned!

They refused placement, other than conditional, and continued to research their own options. My nerves were so frazzled at this point that I started crying in the meeting and couldn’t stop. I asked Mike to step out of the room with me and we convened in a supply closet to regroup. I told him I was mad, not sad, but the tears were a physical reaction to what felt like a slap in the face. Enough. We went home and hired an advocate.

After waiting eight days for answers from the district we sent a formal notification of our intent to place our son at Pine Hill. We said that through our own investigations, we had discovered the Newton Program, had met their team, observed their classes and had successfully had our son shadow with a class for two hours during a regular school day. The director of the program concurs that this would be an appropriate placement for him. In light of the current situation at our district school (continued meltdowns, inability to focus and complete class work, threats of running away to name a few) and a lack of other options, we believe this placement to be the most appropriate for our son at this time. They countered with a recommended placement in a school one town over for students with emotional disorders, which we rejected. Finally they agreed to a three-month placement, but only if we “waived the stay put clause under California Ed Code 56505(d).” They fought with us to the bitter end, finally conceded knowing our next step would be a legal one. One month later, the woman who made our lives so difficult resigned from our district.

Our son attended Pine Hill from 5th to 8th grade.  He lost weight, his blood sugar returned to normal, and within one week of attending Pine Hill, an EEG showed his level of anxiety dropped from 49 to 5%! He made friends and received birthday invitations. Once bullied, he was now among peers that looked up to him. He attended daily social thinking classes and self-evaluated his own behavior several times throughout his school day to reinforce the social skills he’s acquired. What phenomenal growth.

We had one more challenge with the district. They eventually started a program for children on the spectrum in his 8th grade year. They wanted to bring him back into the district (it would save them money) and while we applaud their efforts, we did not want to move him to a middle school for one year. It would be hard enough to move a typically developed child to a new school for one year, only to transition them again the following year. We had to agree to have him visit the new program for an hour.

Our sweet boy stoically visited the program for the required hour while I nervously waited to pick him up. He was tired and ready to go home.

I asked him to write a letter that night to explain how he was feeling and to thank the director of the new program.

(Names changed for privacy)

Dear Mr. Smith,

While I really enjoyed the tour I am afraid I must decline your offer. It is nothing personal I simply am better suited at Pine Hill. Please send my regards to Ana and Alex. I hope we will meet again.

Sincerely C.

We faced this last district struggle, battled-scared and wiser and our son stayed put.

The Beginning.

 

30 thoughts on “How to Make Sandwiches and Other Absurdities

  1. What a fighter you’ve been, for your son’s sake! It must’ve been such an awful shock to see that woman again but a lot of time has passed and her role is different now–try not to borrow trouble! Good luck to your young man in his transition to college.

    Liked by 1 person

    • Thank you, Kerry. It was a shock seeing her name in his inbox. She no longer has the power to get in our way, and at the unversity level, she can old provide support, not hinder it.

      I like your term “not to borrow trouble.” That’s a good one.

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  2. I had to wipe my tears when I read the end of this or shall I say the beginning. There are so many who have had the same struggle with the “system” as you and have not had your strength of character to fight back and win. Your son picked the perfect parents to advocate for him and by proxy, others. I know many un-diagnosed Asperger’s and other spectrum disorders walking around in a world that they just can’t quite handle. I wonder how many are on our streets because of it. If this woman gives your son even the slightest difficulty, she will soon feel the wind in your sail. Mother’s love. There is nothing more powerful.Thank you for bravely explaining this battle you have endured and won on his behalf. I think it needs so much more attention in this world where there are so many that don’t “fit in the box”. I wish there was someway to get this post out to a broader audience. It needs to be. I will hold you all in my daily meditations.

    Liked by 4 people

    • Marlene, it’s true. Our systems are not keeping up with the need. My story is one of dozens I’ve heard from other mom’s with kids on the spectrum. We’re not providing adequate training to teachers so they are ill equipped to handle these bright, struggling kids. Over and over again, schools fail to meet the federally required mandate of FAPE (fair access to public education). Our kids are lumped into “special needs” as if one size fits all. Kids are labeled as typically developed or ‘special’, then placed together in programs that do more harm than good. They tried to put our son in one of those programs. He would have been grouped with several boys who were currently living in institutions. They’re methods for dealing with a child who was a runner (i.e. one who boltsfrom class while on sensory overload) was to call the police. Hello!!! These are grade school kids, overwhelmed and in need of support, not the threat of a police officer. It just floors me how far afield we were.

      You’re right: the streets are full of people that never got the help and support they needed, on the spectrum and otherwise. It’s mind-numbing and painful, isn’t it?

      Well known advocates like Temple Grandin, herself on the spectrum, has been a powerful voice. Have you read her book, “Thinking in Pictures”? She designed her own ‘squeeze machine’ a method of applying pressure to the joints to give sensory feedback. We used a weighted blanket for many years and lycra tubing. They were both calming tools.

      Thanks for your supportive words, understanding and love of the universe at large. A friend refers to us as Mother Warriors. It sure feels that way at times. I’ve often thought of the parents that don’t have the time, finances or emotional resources to help their child. Every last one of our kids deserves the best life can offer. I’m so grateful for how far we’ve come and where we are today. I’m proud to my very core to call him my son.

      His bags are packed. We’ll be off to the university in the morning. I’m excited and I’m scared, but the train is leaving the station and he’s on it. I celebrate that every single day.

      Thank you for being here, Marlene. xoxox

      Liked by 2 people

      • Warrior Mothers is a wonderful term. I an quite familiar with Temple Grandin. Many years ago my son worked on the editing of the movie about her and one of her books is on my shelf. I think I’ve been researching everything I could find on autism and the spectrum since TS was born and they gave a dire prognosis due to lack of oxygen. I think there was some “extra” help at play in his case but some days he does make us wonder. 🙂 Everyone is different in some way; to expect us to all fit in the systematic box is ludicrous. Trying to place children in the autism spectrum is like trying to nail down jello. They are not broken, they are a gift. They are here to teach us all a great deal. What a sacrifice they have make and you as parents to stand up to make sure they are heard. I wish all of you the very best of this long journey. Don’t lose heart. You are needed. I’m cheering you both on.

        Liked by 2 people

  3. Oh, THAT woman! What bad karma she has chalked up for herself, that will be an interesting transition to undergo! Even though I am familiar with this story reading it all here like this melts the heart again. As Marlene has said C chose his parents well – you have done a formidable job on his behalf and he IS and will be a stronger and more assured presence in the world because of that. You and Mike are doing such a fabulous job of parenting both your boys – the rest will fall away eventually and they will remain to fill you with pride and joy!

    But still it is quite a story Alys and should be widely read – it will give heart to the other parents who are struggling within your medical and school systems to get affirmation and help. Choosing not to share the back story with C shows the depth of your wisdom and ability as a parent!

    Obviously the rules and regulations around your schooling system are very different to here. Here parents vote with their feet and can have their children attend any alternate school system freely. It is even possible to attend a state school outside the designated area if you are determined. But so often getting the correct diagnosis and help is challenging – on both sides………… I have seen many kinds of parents in my time as a teacher. I have seen parents who never wanted their child diagnosed as that would ‘classify’ them – never mind that then an IEP would be able to identify the extra help required. [I have also dealt with a Munchausen-by-Proxy parent who came to me every other week with a letter from some specialist or other who had bowed to her wishes and asked for something to be provided for the poor child. It took me years to suss that one out and there was little I could do except run interceptor for the child and plant the seed into the minds of the various specialists who turned up to any of the many IEP’s. Recently I have heard that the child, now a young adult and in therapy, has finally ‘discovered’ her parents diagnosis – it is heartbreaking!] But, I digress 🙂

    Once again your dedication as a parent and a human being shines with heart and strength and wisdom Alys. You have fought a formidable battle and you have won. Just look at your young man – you have indeed won!! xoxo

    Liked by 1 person

    • Pauline, you made me bark out just the tiniest laugh. Yes THAT woman. And thank you for validating my parenting choices. It was a lonely road before finding Pine Hill. I’ve met and made friends with other warrior moms who’ve been through similar if not worse. It’s criminal, really, what we do to these kids.

      When we attended that first birthday party with boys just like him it was positively cathartic. Finally we belonged. We found our own little sanctuary and both of us thrived. I remain in touch with Pine Hill’s beloved social thinking teacher as well as Ed Phipps, the director and creator of the program and several moms. It was so nice to hang out together without having to explain your child’s behavior.

      Prior to Pine Hill, I was getting to know another mom and her son, both acquaintances from a pre-school art class. She took me aside and said that my son upset her son and that we couldn’t have play dates together anymore, but that she was happy to remain my friend. Can you imagine how devastating this was. I needed to return a book, but after months of trying to muster the courage, I finally mailed it to her instead. I just couldn’t take any more rejection.

      I’m impressed to read that children in your country can attend any school, without all the jumping through hoops. Voting with your feet sounds good to me. I’ve known parents that preferred the head-in-the-sand approach and I’m stymied by the denial. It helps no one, least of all your child. What a wonderful teacher you were to those students. You remain a wonderful teacher to the rest of us, making me grateful to call you my friend.

      How terribly sad for the student you described. I hope the modern-day therapy, unlike the trouble the mother stirred up, can help. Tragic.

      Thank you for sharing your stories and experiences. It’s great to have this documented as part of the conversation.

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      • Isn’t it simply wonderful that you found Pine Hill and your little community – we seem to get so lucky sometimes and find ourselves in the right place at the right time with enough bad experiences behind us to really appreciate what we have found…….. I’m daily grateful that I somehow bumbled into your path way and now have you as such a dear friend too 🙂 xo

        Liked by 1 person

    • Thanks, Lisa. It was a shock. Parents are invited to a special session on Friday and he asked me if I wanted to attend. I left it up to him whether he wanted me there and he said no, so it will be better for everyone all around. I want to send him off with as much positive energy as I can muster. We’ve had some wonderful conversation over the summer and I know he’s as ready as he can be. He also knows we’re here for him, today and always.

      Here we go.

      Liked by 1 person

  4. oh Alys I applaud you for your unwavering support and advocacy for your son. it is hard…i know as i did the same for my son’s health care. It is hard enough to have your child suffer but to have to fight for diagnosis, to fight predjudice and to weather criticism from many fronts is truly exhausting. I am glad you had the happy ending of Pine hill…mine was a wonderful Chinese herbal doctor and naturopath who helped us save our son and get our lives back…more than that …give us better lives. i am so sorry that you and your son will have to deal with this woman again and for the painful memories her name on that letter recalled for you. Things are different now. Your son is strong and moving forward. You have seen your tenacity and loving advocacy for son pay off. She was mistaken in her beliefs and your son’s acceptance into University proves that. He is empowered now and you are still by his side offering support. I am sending positive energy your way.

    Liked by 1 person

    • Wilma, you speak the truth: it is excruciating watching our beloved child suffer, while enduring “well-meaning” but misguided and often unkind advice. Facing judgment and the preconceived ideas of others can fill us with self-doubt, even when you know in your heart you’re doing what’s best. It’s easy enough to doubt yourself as you parent your way through a maze of uncharted territory, without support.

      I’m glad you had your own happy ending with the guidance of an herbal doctor and naturopath. What a relief.

      Wilma, thank you for our guiding words. You’re right: he is strong, bright and ready to move forward. His experiences have not left him cowed in a corner, but ready to face the world.

      His acceptance at a private, prestigious university is extraordinary. He applied without revealing his Apsperger’s (his choice) and has shown real pride in his new school. It wasn’t until the summer when he requested an accommodation for his dysgraphia that they flagged him as part of the disabled student body. All he asked for was permission to use his lap top for note taking since his writing is illegible.

      Thank you for your positive energy. Right back at you. xox

      Liked by 1 person

      • you are most welcome Alys your story touched my heart. there are so many silver linings that come with the pain of struggle. you and your family can hold on to those as we have to our silver linings. how wonderful thatcyour son was accepted to the school. A big adventure for him. best of luck to him.

        Liked by 1 person

  5. Pretty emotional stuff here my dear. You’re very brave to document it all, since it’s probably brought up all kinds of horror from back then. Very troubling that one person can cause so much grief for families. Sounded like she was on a bit of a power trip, or a mission to put up as many hurtles as possible. Talk about poorly suited for a position. Seems like her role was more about being a bean counter (saving the district money) than advocating the best solution to families. I read your other messages here too, so I’m happy to hear she’s not wielding any power to deflate, derail or disenfranchise C’s experience in any capacity. Good for you to not let him in on your private worries, since it would serve no positive purpose. It might be naive to think “what goes around, comes around” but I do. See, now she gets to see your son whiz by her, floating on success, with confidence and intent **dispite** of her. It’s poetic justice! Congratulations again for your stellar advocacy, look what you’ve accomplished together! Go Chris Go! xo K

    Liked by 2 people

  6. Although I know your story well, it still amazes me how far Chris has come. I’m impressed by all you both did to not let him “slip through the cracks”. I am also so proud of Chris, and it’s wonderful that he will now talk to me. I’m glad I got to wish him well on Sunday. When he walked me to my car, I got to tell him that I was excited for him and that I’d be thinking about him. I am so happy for you all!

    Liked by 1 person

  7. I first read this a couple of days ago and had no words to express how sorry I felt for what you have been going through all these years. I still don’t have the words, but may I say that you have my full admiration for the way you have persevered to get the best for your son. I hope things get easier here on in. He’s lucky to have you.

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    • Thank you so much for your kind words. I just stumbled upon your comment from back in September. It makes me wonder how many others I might miss.

      I appreciate that you took the time to come back to this post and leave a comment. xox

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  8. Pingback: Life on the Spectrum: When the Universe Calls, You Pick Up – Gardening Nirvana

  9. Alys, I don’t know how I ended up on this page this morning, but I’m sure I don’t need to tell you what an emotional experience it was for me to read it. So much of your story is familiar. Our son never found his Pine Hill. The few times we came close, it was at the end of a tour and we had to pull him out of a place where he had started to bloom, because our family was being relocated by the military. Then the fight would start all over in a different state, where the heroes and the villains had yet to reveal themselves to us. Thanks for having the courage to share this story. I know that so many others will see common threads and know they are not alone.

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    • Julia, I think of you and Matt often and what you’ve been through. I can’t imagine the extra burden of all your military moves, when stability and structure are so beneficial to our guys. You’ve managed so well with all that you’ve had to deal with, but how ridiculous the way we have to fight for the basics, the very education that we are already paying for with our taxes. I hope others will read this and share it. There is light and hope, and perseverance pays dividends, but the battles people must fight for their child’s right to an education is cruel and damaging to everyone. Arms around you and an extra hug for your brave son, too. xo

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  10. Hello dear Alys, at long last I have had a chance to read your post. I am only barely returning to blogging after my mother’s stroke, but now she is recovering, I am able to give myself permission to do the same…but of course, life is never that simple with an Aspie child which I don’t need to tell you. I read your story here and shake my head in despair but then smile, one warrior mum to another warrior mom – although I am called both mom and mum 🙂 As a Brit, I married an American and lived and raised my three children in California for almost 20 years. Oh how I feel for the very long journey you have travelled with your dear son and the so-called ‘professionals’ who made things so much harder for you and your family than they should have been, but you won! My daughter went all the way through school and a two year college programme in art & design before she was diagnosed at 18 with Asperger’s. Since then, she has been unable to leave the home unless with me, becoming socially avoidant. Her entire social life is online other than with our immediate family. She is so bright, astute, wise, a lovely, beautiful person inside and out yet she can’t cope with life outside although she longs to be able to find her way, to make her mark. She writes and blogs and writes html, continues with her art and takes care of her Chinese Button Quails – pet mad! She has so much to offer the world! Your victory for your son at Pine Hill is a testament to your love and fight for your boy. When my daughter was in third grade, she cried every morning. I tried moving her to a private school at a cost we couldn’t really afford, but that didn’t help and she seemed lonlier than ever. Eventually she went back to the previous elementary school, and seemed okay to a point, but despite me picking up on ‘things’, the teachers always told me she was fine, a delight, well behaved. She slipped beneath the radar. How she got through school I will never know. Every single day she begged me not to send her. I honestly don’t know how we got through those years, and I was a single mum for part of them when my now ex decided to call quits on our 22 year marriage. Such is life. When she was 16, ‘professionals’ blamed her problems on mine and her father’s divorce and the fact that I had ‘dragged’ her to England from America, even though she spoke up and denied it all, saying she had felt different all her life and that her problems went far deeper than that. One social worker once asked her why she looked so miserable and why couldn’t she just go out with her friends? She became mute, holding in her rage, and so he did so much harm. Needless to say, I went to war!! Thank you so much for sharing your journey, for connecting with me and for your patience and understanding in me taking so long to come over to your blog. It’s a pleasure to meet you, in the fray… xo

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    • Sherri, I think it’s more common for girls to fall through the cracks. Fewer are diagnosed on the spectrum, and those that are, manifest some of the typical traits differently. We too were told time and again that behaviors where this, that or the other. They don’t do themselves, our kids or anyone else any favors. It makes me mad and sad, depending on the day, sometimes both. But it also made me fight for what he needed and that’s what you do. I’m very sorry your marriage ended when it did. Life is hard enough without that.

      The social piece is challenging. One of the greatest benefits of the PH program was the social cognition class. Every single day they worked on social issue using the Michelle Garcia Winners model. I wonder if there is anything in that curriculum that might help your daughter? My son learned about turn-taking, the social fake, how to identify a crisis on the scale of 1 to 10, i.e. if a house is on fire, it’s a ten. If you missed your turn it’s a two. I remember the first time he got into the car and asked me about my day. It was really something.

      I’m glad we’ve connected and send you best wishes as your journey continues. My best to your mom/mum as well. xo

      Liked by 1 person

      • I’m so glad we’ve connected to Alys, and thank you so much for your best wishes for my mum…and me 🙂 Means a lot that. It’s so good to know we can walk this particular path together. I have written on my blog from time to time about females with Asperger’s and the way it presents differently. My daughter fell through the cracks, she was invisible at school. The only ‘intervention’ she ever had in high school was something called Kinesthetics, a more hands-on style of learning to help her study for her exams. But even there was talk by one of her teachers about the possiblity of Asperger’s, our doctor (through whom the referral for diagnosis had to be made) did nothing to help. It took a year of going back time and again and finally a different doctor before things moved. After her diagnosis, I thought ‘hallelujiah, now we’ll get the help’ but that turned out to be a nightmare time, years at a stretch. It is getting a little better, but due to Government cut backs here in the UK, the funding for all things mental health wise is making it even harder to get the ongoing support. I did at last fight for my daughter to get a referral to an psychologist from the Asperger Specialist Team, and he’s been meeting with her regularly for the past 3 years. As you say, our experiences have made us fighters, but it gets exhausting sometimes doesn’t it? I’ve not heard of the Michelle Garcia Winners model; it sounds excellent. Perhaps if my daughter had been diagnosed while still at school it would have been different, I don’t know. For adults, the support is abysmal, but she is slowly finding her own way to cope, her own strategies. Sometimes this means she shuts herself away (shutdowns), but these don’t happen too often these days. Her world is safe and secure yet she still struggles with severe anxiety. It took 5 years before we finally met with a psychiatrist who took her seriously and gave her the right meds which are helping greatly. And not addictive!!! Ahh…I could go on and on! I am beaming at the thought of your son asking about your day…that is a huge milestone! And thank you for your kindness and understanding Alys…it helps, a lot! Big hugs… xoxo

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