A Post Of Gratitude

This weekend my family has experienced a degree of support and love that we never expected.  I can't even begin to express how thankful we are, and how loved we feel.

For autism awareness month, one of the local service dog organizations ran a "contest" for a grant for an autism service dog.  The award is $10,000 toward the dog and it's training (note that the total cost is $18,000, so we will still have some work to do if we win).  I filled out the application and had Jack color the picture they asked for the applicants to color- this is torture for a kiddo who hates fine motor activities, but he did give it his all.  I sent everything in and hoped for the best.  All the sudden last week, Jack's picture, and several others appeared on the service dog website and it was announced that whoever got the most votes would win the grant.  I had no idea going into all of this that the decision would be based on "votes".

On Friday I started an event on facebook "Vote for Jack for a Service Dog Grant".  John and I invited all of our friends, and added it to a few groups, I reached out to a few fellow bloggers who shared our invite as well.  We hoped to get some votes.

We could NEVER have imagined what would come next.  As of right now, with all of the people family and friends have invited, there are over 4800 people invited to this event, and we have had over 1400 votes for Jack.  If you haven't voted yet and would like to, just follow the link below (you do have to be a member of facebook) and "like" the first picture, which is Jack's.  It is the black dog with the orange collar.  Voting is open until Friday and we can use all the help we can get as the competition is close!

https://www.facebook.com/servicedogswarrenretrievers/posts/864690363601636
As a family with two kids with autism, we sometimes feel isolated.  We feel like many of our struggles go unnoticed, or that people just can't understand what we are going through.  Even though these facts remain, I have to say, this outpouring of love and support for our family?  It means the WORLD to us.  Just everything.

We have not told Jack that the contest is occurring as we did not want to get his hopes up and have them dashed.  But....his birthday is tomorrow.  What a fabulous thing to possibly be able to share with him later this week!!

Here is a little more information about the purpose of autism service dogs:

• To help prevent the child from wandering or running away.
• To help with self-soothing during melt-downs. The tactile stimulation, whether by petting, hugging, or having the dog actually lie on the child, can help the child learn the skills of calming themselves.
• Socialization (including serving as a "social bridge", so as children and adults come over and ask about the dog, the child with autism is prompted to answer. The parent should not answer questions, but should refer all inquiries to the child. Thus with the dog, rather than having just the parent or teacher try to bring the child out of their own world, the entire community is talking to the child.)

A long-term study of service dogs and children with autism reported:^[3]

• “Highly significant increase in pro-social behavior with a parallel decrease in self-absorption."
• "Fewer autistic behaviors - examples include clicking noises, repetitive spinning or jumping or hand-posturing (stimming), and bolting or roaming."
• "More socially-appropriate behaviors (such as reaching up for hugs, frequently imitating the therapist's actions, joining or initiating games).”

Autism Assistance dogs can be trained to help keep the child safe. With tracking the family is able to quickly find the child if they wander away and can't be seen. With tethering the family is able to enter the community with their child who has Autism safely. The parent is always in charge of the dog.


Thanks for helping our family, and most of all, our Jack!!!!

Our NIH and Aricept Journey with Nate

I have had a few people ask me if Nate is ok, so I wanted to post quickly to say YES!  He was in the hospital at NIH last night as part of a study he has been participating in for the past 18 months.  Yesterday was his last of 5 comprehensive appointments (and I do mean comprehensive!!!).  The trial was testing a drug called Aricept, which is traditionally used in Alzheimer’s patients, in children with autism.  One of the commonalities that have been identified in kids with autism is shortened REM cycles during sleep.  It has been proven that in our little ones, lots of brain development occurs during deep sleep.  The hypothesis is that Aricept will help increase the length of the REM cycles (IE the amount of this deep sleep), helping promote brain development, and hopefully leading to increased language/communication. 

http://www.nimh.nih.gov/labs-at-nimh/join-a-study/trials/childrens-studies/the-dreme-study-a-trial-of-donepezil-for-rem-sleep-enhancement-and-improvement-of-asd-core-symptoms.shtml

I was all for this study when we began, and I stand behind my decision to participate.  That being said, what sounds “reasonable” when you are starting can quickly become quite overwhelming.  The study visits were not frequent- approximately every 6 months (except while he was taking the medication, when it was a bit more frequent), however they were extremely intense and had Nate and me leaving feeling like a dish rag that was rung out, crumpled into a ball and hurled down the stairs (not to be dramatic, lol)

Each visit entails about 4 hours of developmental testing- the Mullen Early learning scale, the ADOs, if you are an autism parent you are very familiar with these.  That doesn’t make them any less painful, but you are familiar.  I also sit with the team for a good 2 hours and answer questions (think rating aberrant behaviors, giving a number to measure the progress of his eye contact and answering to his name, etc.).  Then after the kiddo is completely fed up, I am put in a room and told to “play naturally” with him for 15 minutes.  HA!  After that is inpatient registration, admission to the hospital and EEG lead placement.  That is one of the more painful parts, as you have to keep your child still to have MANY electrodes glued to their head and then “blown” dry with puffs of air.  For a child with sensory issues this is NOT an easy task- letting someone hold his head, especially near his ears, hold it still, blow air near his ears, not fun.  The first time we did this with Nate, he was able to stay unrestrained for the full placement.  As we have moved through this process it has become more difficult- could be one of two things- 1- he is wise to our game and isn’t putting up with it, 2- he is more aware of what is going on with his surroundings and more distressed by it.  I tend to think it’s a combination of the two.  In any case, we have used a papoose restraint the last few times.  I made the decision to just put him in it from the get go yesterday- the faster the process goes, the sooner he will be done.  He was actually quite calm.  The research team is incredibly supportive and literally holds your hand through this whole process, and your child’s.  The neurologist has practically stood on her head to get Nate’s iPad at the appropriate angle so he could see it during the lead placement, and she stays the entire time, as do the research assistants- you will see one lounging with Nate below.

After the leads are placed, he has an awake EEG that just measures his regular brain activity.  Then we head downstairs for an hour or two to eat and wait for bedtime.  This is when I am reminded of how blessed we are as a family, as the inpatient pediatric unit at NIH houses children with a multitude of issues, the main commonality is that they are more severe than what we are dealing with.  Yesterday Nate’s nurse was giving another patient a bone marrow transplant (brought back memories of my BMT nursing days!), the patient next to us was 4 and not yet sitting up (and had come from Germany seeking help), and we came face to face with a small child with gray hair and wrinkles (and in a wheelchair).  Sometimes, we all need to see and hear about people dealing with these difficult and life threatening issues to see the blessings in the fact that although yes, Nate is running laps and yelling all day long and can’t tell me exactly what he wants, he CAN run, and he CAN yell, and he knows what he wants.  That is priceless, and something I try not to let myself forget.  But life gets in the way and we all get caught up in our own issues.  Even though I am a nurse and speak with patients with serious medical issues daily, face to face contact really is different.  Nate’s survival is not in question.   This is so crucial to remember.

Anyway, it’s good to get this perspective BEFORE the sleep study begins lol.  Nate always goes to sleep like a champ, and stays asleep for a good 4-5 hours (last night was almost 6!).  But when his normal half waking period in the middle of the night happens, the trouble begins.  He will turn and kick, which he does at home, only now he has electrodes and leads on both legs, and electrodes on his chin (which they place after he falls asleep).  No matter how many times he starts to fall back asleep, and believe you me, we rock, we sing, I massage his legs, I rub his back, and I beg…..he just can’t get back to sleep.  He was up at about 2am, fully awake at 3am.  At 4 am, Rajiv, our wonderful tech popped in and asked me what I thought.  I told him I knew the jig was up- he laughed and said he always knew that when Nate’s legs start kicking, it’s all over.  So then we went through the process of removing all the electrodes (at 4am) during which time it became painfully clear that Nate’s frequent approximations of *uck are not at all coincidental, sigh.  As Rajiv put it, I WAS hoping for language, and I know I said at one point I didn’t care anymore if it was all curse words, at least he would be communicating.  Guess he took that literally- freaking autism, lol.

Saying goodbye was surprisingly hard this morning.  The doctors, techs, psychologists, research assistants, etc. (even our nurse on the inpatient unit) have been following Nate for 18 months.  Nate has done a lot of growing during that time.  I don’t think his assessments are going to show his progress, after all, the fact that he now requests bubbles with “more bubbles, again, now, go” , pointing, and physically pushing the researcher back to the bubbles, as opposed to requesting bubbles with just “more” in the beginning still “tests” as requesting.  I frankly don’t care.  Because I see it.  And I know that the people doing the assessment see it- and that’s all that matters to me.  The subtleties of his improvements may not show up on paper, but they have made a tremendous impact on his and our quality of life.  We will take it.

I would highly recommend that if you or a loved one has a medical condition and you are feeling at a loss, you contact NIH.  We have been to many doctors, facilities, and research groups at this point (Kennedy Krieger, Hopkins, Children’s National Medical Center) and by far, NIH has been the easiest to work with.  They are appreciative of your time, they are respectful of your family, and seem genuinely concerned for their subjects’ well-being. That just can’t be said for everyone out there.  

When we said goodbye to the neurologist this morning, she told us that if Nate ever has any neurological testing ordered by a physician, we should contact them first before going to another facility.  If they can fit him in, they will do any EEG’s or sleep studies he needs there.  Because then they will have even more longitudinal data, and Nate will be in a familiar environment.  Rajiv also said he would see us in 10 years when they had finally put more of the “pieces” together and could recognize any of the, as of yet, unidentified abnormalities on his eeg (there is abnormal brain activity, just not seizure activity).  I have no doubt that if anything that could help Nate comes up, they will get in touch.  That makes every single minute of holding my breath and begging my son to go back to sleep 100% worth it. 

Choices, Chances, Changes

I really don’t have time to be writing this at this stage of the game, but I almost need to.  I need to process how after years of being an “autism warrior mama” so many things can be changing all at once, leaving me feeling like “the new kid” all over again.

That’s the thing about autism, since there is no “right way” to parent, or seek treatment for our kiddos, and there is no “end game” involved either.  There is no, ok, well we sought “treatment” or “therapy” and now we are all set.  Nope.  There is always something different that can be tried; there is always someone over your shoulder making suggestions.  And no one is right, but everyone is, because no one really knows.  In some ways, it’s positive, because there are always other avenues to explore if what you are doing isn’t working, but, there is always that feeling of not knowing what you are doing, and if you are me, always feeling like you aren’t doing enough.

Tomorrow is the start of some huge changes.  Nathan has finally been approved for ABA- starting tomorrow we will have therapists and techs here 8:30-11:30 am Tuesday, Wednesday, and Friday, and 4-6pm Tuesday-Friday.  Jack is right behind Nathan, and will be finishing his ABA evaluation on Thursday.  For Nathan that means a lot less down time, and less time at Cisco Center, which has been a huge part of his life for the past 2 years.  As I said to Cisco over the weekend, this is not a reflection of our opinion of Cisco Center, this is just me, as a mom, trying absolutely everything I can to help my son.  But that doesn’t make it easy, for Nate, or frankly for me.  This will change everything about our day to day life, from my schedule while working from home, to cleaning the house, preparing meals, to getting Nathan on the bus for school (I will need to drive him to Cisco center after lunch as that is where the bus picks him up).  My “guess” is that Jack will also end up with daily ABA 4-6 pm, after school.  Talk about crazy afternoons!  It’s worth it, and they deserve it.  It’s just more change.

Add to that the fact that Nate’s transition IEP meeting is this Thursday.  There will likely be about 12 people, in a room, reviewing all of his progress or lack thereof, and deciding where he will go to school next year.  I am pretty confident of what the decision will be, and I agree with it, but that doesn’t change how extremely emotional it is.  Because beneath this exterior, I am still that mom who wishes more than anything that I could put my little guy on the regular old bus with the neighbor kids and send him to kindergarten like most parents do.  There are several kids on our street who are the same age, and I will be watching them go next year.  It’s just all hard.  None of this is easy, and contrary to what people have told me a million times, it doesn’t get easier.  It gets harder

We are also working on new medical interventions for the boys, new supplements, dietary changes, the “usual”.  Jack has several medical consults coming up.  Nate still needs to complete his final NIH sleep study, as we had to cancel it last week when he was sick.  Jack’s IEP meeting is April 9^th, this year has been rough for him at school, and I don’t feel he is getting the support he needs.  His new BCBA and an educational advocate will be helping me prepare for this meeting.  I love his teachers, and his special educator, but I am seeing changes in him that concern me, increased anxiety, increased behaviors, and an inability to keep up academically. 

So in a nutshell, I know we are doing “the right things”.  But I feel like I am living in a pressure cooker over here.  There are days in life when all you can do is focus on “walking through” all of this.   Never in a million years did I think that there would be this many people involved in the raising of my two children.  Never in a million years did I think that I would have no idea what to do for my own kids.  But here I am.  I am extremely fortunate to have all of this support coming for the boys- but I am overwhelmed.  I think I need to seek some more support for ME.

Development In Slow Motion

As parents, we celebrate all of our children's accomplishments.  In the beginning, with Jack, I was completely clueless.  He was such an early talker, and as a first time mom, I was oblivious to the fact that other kids weren't developing at the same rate- until I took him to playgroup, where he would want nothing to do with the other kids, but would talk "at" all of the adults in full sentences, at 18 months.  And the other moms would say things like, "excuse me while I go kill myself".  My little boy genius.  It took awhile for me to realize that he did not truly understand most of what he was saying.  To this day, scripting is a huge part of our lives, and people who don't know him too well say how brilliant he is.  Which he is.  But that's not why he is spouting those facts out rapid fire every day.  That is his comfort, his script.

Watching him learn how to read this past couple of years has been absolutely amazing.  I now have a different point of reference, Nate.  And watching Jack learn how to read is in many ways like watching him learn how to talk all over again.  I just have a whole different level of appreciation for my kids' accomplishments these days.

Nate's development, like many kids with moderate to severe autism, has been such a roller coaster.  Two steps forward, five steps back, another five steps back, four steps forward, and then freeze frame, repeat.  My level of fear far outweighs my need for hope at this point- to put it another way I am absolutely AFRAID to hope.

At some point though, you have to make a decision.  Are you going to live your life feeling this anxiety, or are you going to do everything you can to put that fear aside and allow yourself to enjoy these positive moments, however fleeting they may be?  Can you allow yourself to enjoy your child saying new words when you know they may never say them again, or they may disappear tomorrow?  Well, it's really really tough.  But you have to find a way.  Right?

I am trying really hard to do this.  When I first started this blog, I would jump on when Nate would start saying new words, and say things like "I hope this is it!"  Maybe you haven't noticed, but I have stopped doing this.  It's too scary.  It's never "it".  I don't think there is any such thing anymore.  I don't believe anyone who tells me Nate's speech is just going to "take off."  John and I sit and talk at night about how weird it would be to have Nate walk up to us and just start talking.  It would be freaky at this point (don't get me wrong, I would get over it)

He IS developing though.  He really is.  It's just in slow motion.  The accomplishments are things that with Jack, I never even noticed.  But they are there, and now I have to admit it.  It is absolutely fascinating.  For instance, Nate is obsessed with peek a boo right now.  And it's not the object permanence thing, it is the interaction piece.  He LOVES to see your reaction, to be surprised, to do it again and again.  This may seem like a small thing, but it is not.  It is Nate realizing his actions can have an impact, that he can affect his environment.  Yesterday he hid behind my bedroom door when it was time to go downstairs in the morning.  I found him laughing hysterically, hiding.  He knew he was going to surprise me and was anticipating it.  Now, he is super interested in doors- he stood in his bedroom this morning opening the door, looking behind it, closing it, getting down on his knees and looking under it.  It's like it's the first time he has ever realized the impact of a door, even though he has been opening and closing them for a long time.

Watching Nate finally notice his environment like this-  it's just crazy.  When Nate hits a milestone like this, my joy almost happens in reverse.  It's like- wait, oh my gosh, I never even realized he wasn't noticing this before.  I can't believe he wasn't noticing this before!  But wait, he is noticing it now!  And for now, that is enough.  

The Measles Outbreak: A Reality Check

     

Disclosure:  I have two children with autism, they are both fully vaccinated.  I believe that vaccination is hugely important and my children WILL be vaccinated.  I don’t want them to die of a disease that could be prevented.

Guess who is not fully vaccinated in this family?  Or at least is more likely to be an issue.   ME.  And my husband.  In your family, it’s likely YOU.  Why? 

http://www.usnews.com/news/blogs/data-mine/2015/01/26/whats-really-behind-the-measles-outbreak

Two doses of vaccine were not recommended until 1989 – meaning that anyone over the age of 26 today may not have received a booster. Orenstein says the CDC for this reason advises adults traveling outside the U.S. get an MMR vaccine.

According to an article in the Journal of Infectious Diseases, people who were not in the targeted age group went unvaccinated, leaving a gap of people in older age groups who were not protected. "The major problem with measles in highly vaccinated populations occurred among middle school, junior high school, senior high school, and college students," the article read. "The quickest way to eliminate that problem would be a mass revaccination campaign of all such students. This was considered too expensive and logistically difficult to carry out."

Orenstein says the reason public health measures focus on vaccinating younger children is because they suffer the most severe consequences of measles. This approach, however, means some adults could have been missed during that time period. "What I wonder about are these people who fell through the cracks," Orenstein says

Here, directly from the CDC website:

http://www.cdc.gov/vaccines/schedules/downloads/adult/adult-schedule.pdf

Measles, mumps, rubella (MMR) vaccination

• Adults born before 1957 are generally considered immune to measles and

mumps. All adults born in 1957 or later should have documentation of 1 or

more doses of MMR vaccine unless they have a medical contraindication

to the vaccine or laboratory evidence of immunity to each of the three

diseases. Documentation of provider-diagnosed disease is not considered

acceptable evidence of immunity for measles, mumps, or rubella.

Measles component:

• A routine second dose of MMR vaccine, administered a minimum of 28

days after the first dose, is recommended for adults who:

—— are students in postsecondary educational institutions;

—— work in a health care facility; or

—— plan to travel internationally.

• Persons who received inactivated (killed) measles vaccine or measles

vaccine of unknown type during 1963–1967 should be revaccinated with

2 doses of MMR vaccine.

Mumps component:

• A routine second dose of MMR vaccine, administered a minimum of 28

days after the first dose, is recommended for adults who:

—— are students in a postsecondary educational institution;

—— work in a health care facility; or

—— plan to travel internationally.

• Persons vaccinated before 1979 with either killed mumps vaccine

or mumps vaccine of unknown type who are at high risk for mumps

infection (e.g., persons who are working in a health care facility) should

be considered for revaccination with 2 doses of MMR vaccine.

Rubella component:

• For women of childbearing age, regardless of birth year, rubella immunity

should be determined. If there is no evidence of immunity, women who

are not pregnant should be vaccinated. Pregnant women who do not have

evidence of immunity should receive MMR vaccine upon completion or

termination of pregnancy and before discharge from the health care facility.

Health care personnel born before 1957:

• For unvaccinated health care personnel born before 1957 who lack

laboratory evidence of measles, mumps, and/or rubella immunity or

laboratory confirmation of disease, health care facilities should consider

vaccinating personnel with 2 doses of MMR vaccine at the appropriate

interval for measles and mumps or 1 dose of MMR vaccine for rubella.

Now, tell me, have you all followed this guideline?  I am a nurse right?  I worked in a hospital for the first 8 years of my career.   I had to get my hepatits B vaccination as part of being employed; I had to get TB tests annually.  I was expected to get the flu shot.  No one checked my titers for measles, mumps or rubella.  And for people in my age range, we should be checked.

“Anti-vaxers” are to blame right?  Did it occur to you that you may be a big part of the problem too??  I think there needs to be more education about this issue. 

On “anti-vaxer” parents:  I disagree with not vaccinating your child.  I do.  I have done a ton of research as a mom, and even more as the mom of two boys with autism.  The benefits do outweigh the risks.  If you are worried about your child having a reaction, there are measures you can take to help “shore up” your child’s immune system, to protect them the best you can.  And you can spread out vaccines (although not the MMR which is no longer available in separate doses-  http://www.askdrsears.com/topics/health-concerns/vaccines/separate-measles-mumps-rubella-vaccines-longer-available-can-parents) .  Which I believe is fine- as long as you take the time to follow through.  I have a good amount of medical knowledge, both professionally and of course personally.  Even with all of that information, my education, and my experiences, I have found myself questioning the norm.  And I have had numerous medical professionals tell me the norm is wrong, I have had professionals tell me that my son is vaccine injured.  Literally told me that.  Once again, I am well educated and have a very hard time swallowing all of the conflicting information.  Imagine how those who have less information and are hearing these statements must feel. 

What pisses me off is the holier than thou people out there that slam anyone who questions the status quo.  And I mean- Pisses.  Me.  Off.  Most of these parents do not have children with autism or other health issues, in my experience. It’s easy to judge when your toddler is running around you saying WORDS and going to regular preschool.  When you haven’t had a professional tell you that vaccines have affected your child negatively.   I have come so close to defriending some people who are otherwise dear to me lately because I can’t stand the snide posts that are constantly in my news stream.  I have chosen to block their posts instead, we all have our opinions, and I can love you and not agree with you.

I have kept my mouth shut to this point because I feel like I will be attacked no matter what I say.  But screw it, I started a blog to express myself, and this is how I feel.  Before you go attacking parents for not vaccinating, look at the facts above, we, as parents, are being infected MORE than our children.  We are more responsible for this outbreak spreading than any unvaccinated children.  Get your titers checked people.  We are just as much to blame for this situation, if not more so.  So yes, kids need to be vaccinated, but so do we.  It’s much easier to blame the problem on others, to single out one group, especially when you disagree with them to begin with.  If only it were that simple.  

Autism Parenting and Chronic Stress

Lately I find myself on the verge of my own meltdown fairly regularly.  I have so much on my mind that I have very little capacity to handle the unexpected, and unfortunately, the unexpected happens pretty much daily.  I am chronically tired and constantly planning my day in 5 minute increments, it gets old. 

I think this is the case for most moms out there; we all have to cope with constant change.  That being said, I still believe that my life as a mom is quite intense.  My job is intense, and never lets up, not for inclement weather, or holidays, or illness, nothing.  Working from home- people always tell me how lucky I am- and it’s true in many circumstances.  However, the past 6 weeks have been HELL.  The boys’ childcare closed for a week and a half over Christmas, then has been closing for any and all inclement weather.  The end result has been me, at home, with two children with autism who literally do not understand the idea of “being quiet” (yes, I know moms are going to say no child does, but I PROMISE you, this is different), a 30 phone call daily requirement with all calls being recorded, and constant fear that I will lose my job if Jack chooses to come in and start talking about his latest obsession during one of the calls that will be listened to.  It has involved me locking myself in my office at various intervals to make important calls with two small children pounding on the door and crying.  It has involved me running all over the house with my computer, hiding, just to get something done.  It has involved me allowing my kids to constantly watch TV when I am totally against it.  And while I have gotten some offers from people to sit for the boys during the bad weather (which it has to be said, has never been bad enough for anything to actually be closed), I am already paying for the closed childcare and cannot afford to pay for more.  It’s an awful situation, and I think that people forget on both ends just what we as parents are trying to juggle.   I find myself feeling like a bad parent (see above TV statement) and a poor employee (seriously, try to get the 30 calls in each day, with kids at home, school tours daily like last week and an IEP meeting to boot- try).  My house is a mess, laundry is everywhere, there are potato chip crumbs all over the floor from me shoving food at the boys to try and keep them quiet while I am on the phone.  My parents live just far enough away that when the weather is even a little bit rough I feel bad asking them to come help, John’s new job takes him an hour away each day, and he has no vacation or sick time because it is a new job- so I am on my own.

End result- I am slowly losing my mind.   I also decided to do a 60 day “insanity” diet and exercise challenge starting in January. HA!!!!!  After 2 weeks, and only 2 pounds lost, I found myself so lightheaded while visiting my sister and trying on bridesmaids dresses that I ended up outside a Panera tossing my cookies.  Yep, good times. 

This constant “fight or flight” crap is mentally exhausting.  If I could get one day of “just work”, well, honestly I don’t know what I would do.  I see some dancing though, definitely dancing. 

The cherry on top is the whole autism parent-advocate role.  This spring is extremely intense, trying to decide Nate’s next step- he is going through a series of assessments over the next 60 days, I am touring his different school options, and then comes the big meeting with the current school staff, the “transition team” , his outside teachers and therapists, and mom and dad in March.  We also became aware recently that our health insurance with John’s new job covers ABA, which is amazingly, fantastically wonderful.  However, it has involved a ton of paperwork on my end, not to mention the assessments that are coming up connected with that, etc.   I will say that I am ecstatic about finally having the opportunity to provide my son with ABA- it’s one of the few “proven” therapies for autism and it has killed me that I haven’t been able to do this for him (it’s you know, thousands of dollars each month).  This development is a huge mark in the win column for our family.  Nate also recently started some new medical treatment, which involves weekly trips to the pediatrician.  Oh, and grant applications for state funding were also due this month. 

What chronic stress?  I’m all good over here.  But if you hear a primal scream emanating from our general vicinity, well, it could possibly be me.

Kindergarten Planning In Our Alternate Universe

It doesn’t matter how long you have been preparing yourself, how many times you have told yourself that it will be fine and you are prepared for what is to come, that you are doing what is best for your child.  When the time comes to confront your child’s challenges yet again, it HURTS. 

I remember Jack’s kindergarten transition, how nervous I was, how concerned I was that he didn’t have the services he needed (he didn’t) and that he would struggle a lot because of it (he did).  And now I know that relatively speaking, it was child’s play.  That experience was merely the training wheels for now.  The training wheels are off, and I find myself having a very difficult time coping.

Bottom line- I want my son to go to kindergarten.  I know that he can’t go- not to traditional kindergarten.  But right now, I am mourning this loss.  Even though I thought I had prepared myself.  I am angry, and I am devastated.  I am disappointed in myself, and all of the interventions and therapies that we have employed to help Nate.  We couldn’t get him there.  And God knows we tried.  I feel like a buzzer is going off “buzz!  Time’s up!”  Early intervention time is over, time to move on.  You had your chance and you blew it.

That’s not “what it is”, but right now, that’s what it feels like.   It’s hard to accept that these years of early intervention, these years that I was assured would be effective and I “wouldn’t even recognize my child in a year”, were unable to get him where he needed to be.  My kid is obviously not the only one, and we are super lucky to have the options that we do, but honestly, that doesn’t make it hurt any less.  I hurt for him, for what he doesn’t even know he’s missing.  I hurt for my husband, who would love to be able to coach a team for him and likely never will.  And yes, I feel sorry for myself.

I avoid moms who have kids Nate’s age, even friends who had babies at the same time I had Nate, especially when their kids are with them.  It is so incredibly painful- even if their child just interrupts a conversation “mommy, can I have this..?”  I can’t take it anymore.  It’s so incredibly, beautifully normal.  These kiddos are going to go to kindergarten and my beautiful perfect son will not.  They will be getting on a bus of their peers for the first time; my son has been taking a bus every single day since he was 3.  I ran into someone in the grocery store last week, her older son was in Jack’s preschool class when he was 3.  She has a daughter Nate’s age.  She was talking about the preschool, where her son continued to go, that her daughter is about to “graduate” from.  This weird feeling came over me.   It’s like I forgot it existed.  I forgot that world kept going when we had to bow out.  Nate never got to go to preschool.  I guess those other kids did- why this didn’t occur to me is beyond my comprehension.  We are living in an alternate universe over here.

We will be fine, I will be fine.  We will find a good program for Nate.  None of those things are in question at this point.  I just need to go through the process of letting this happen.  Of reacquainting myself yet again with what will be our “normal”.  I know that I would never want to subject Nate to typical kindergarten; it would be absolute torture for him at this point in his life.  But letting go of that dream, it’s just really hard.  No one will ever know what it’s like until they experience it.  See, there I go, trying to try to wrap a nice little bow around this post and end on a positive note.  You know what?  I’m not gonna do it.  THIS SUCKS.