Special Education Programs

I am in a very unique position to have 2 children, Matthew and David, with similar, yet different profiles, who are 3 years apart, and yet who are having insanely different school experiences.  While those who meet Matthew and David typically would see them as very different;

Matthew- loud, outgoing, excited, personable

David- calm, quiet, introverted

based on their special education profiles, both boys are somewhat similar.  

• Both boys are able to read most written words, yet comprehend very little.
• Both boys have worked on basic math skills, but have only limited understanding of coin value, passage of time, or anything beyond addition.
• Both boys possess the ability to share their thoughts and feelings, but both only do so on a very limited basis and not often with social awareness

Luckily, for David, he is 3 years behind Matthew in school, and for him it appears that our District is beginning to create some incredible programs.  David this year went from a self contained Skills class, to a self contained Intensive Skills class and I could not be happier.  What this has meant in layman's terms is that David has been able to go back and work on the things that he had not yet mastered.  For example, David does not have an understanding of 1:1 correspondence, a basic skill needed in order to learn other mathematical concepts.  However, in the Skills class last year, David was introduced to subtraction, and even multiplication because it was "part of the curriculum".  This year, all of David's skills are taught at his level, and so he is being given the time to master the concepts he has not yet mastered, and his education is being altered to specifically meet his needs.

At David's conference yesterday, David's teacher shared that the Intensive Skills program is being expanded through the Middle School and into the High School in upcoming years.  This will mean that the educational track that David is on, will allow him to complete his education on a similar path.  Sure, if he makes huge growth, there is room for him to reenter a Skills classroom environment, but if he stays on the path he is currently on, he will have a supportive, developmentally appropriate environment which will serve him until he is 21.

By contrast, Matthew, who is only 3 years ahead of David, has been unable to have his needs met adequately through our district.  It seems strange that the population of students is so different in 3 short years, but that is what I am being told.  In Matthew's age group, the Intensive Skills classroom is made up of children who are non verbal- for a child who likes to communicate verbally, which Matthew does, this makes the class a poor match.  In David's Intensive Skills Class every child is verbal to some extent.  

I have asked the District to please help me evaluate other program options for Matthew, but I feel like I am in a real life version of The Three Bears:

• This school is too academic.  This school is not academic enough.  We can't seem to find one that is Just Right.
• Matthew is too behaviorially needy for this school.  Matthew is not behaviorally needy enough for that school.  We can't seem to find one that is Just Right.
• The children in this school all have mental health issues, but not developmental.  The children in that school all have developmental issues, but not mental health issues.  We can't seem to find one that is Just Right.

It is strange to sit in a conference, as I did for David yesterday, and gush about what a perfect educational environment it was.  David is talking more, sharing his thoughts, understood by his entire staff, and learning!  There are strategies in place for the days when David is struggling, and there is recognition by a team of adults that David struggles at times and we are unsure why. 

It is heartbreaking to know that Matthew deserves and is owed the same high quality experience but I can't find it for him.  Just a year ago, this class seemed out of reach for David, and yet I fought and I begged and I pleaded and he was observed and finally we all agreed it was a great classroom for David- and it is!  The same type of experience has to exist for Matthew, but I can't find it.  I have googled, I have asked, I have done what I know how to do, and yet I am coming up empty.  It is disheartening to know that I only get 1 shot to get this right.  My boy is going into 9th grade, and he needs a rich, safe, warm learning environment that is led by a team of adults who understand children with permanent brain damage due to fetal alcohol syndrome.  

David turns 11

David just turned 11.  He is an amazing, sweet, loving little boy, but he is far from what most kids are like at the age of 11.  David is an 11 year old who is still not toilet trained.  He is entering puberty, and yet developmentally in most ways he is still cognitively, emotionally and developmentally a 4 or 5 year old.

David is working on basic concepts like 1:1 correspondence- he still struggles with counting items past 7.  

David is able to read, but not often able to tell you what he read without prompting.

David is able to know enough  to be aware that he needs to use the toilet, but either not able to recognize the need to go, or not aware of when he is going.  Instead of asking for help however, something many 2 and 3 year olds will do, David has recently started hiding his pullups that have poop or hiding his soiled underwear.  We talk about the reasons this is not a good idea.  I implore David that when he has an accident I am not mad, I just want to help him clean up, and yet this weekend I have found 3 pairs of soiled underwear or dirty pullups in David's bedroom.

I know in many ways it is hard for parents when their children have a disability that is visible.  That said, I often wonder how life would be different if David and Matthew looked more disabled.  It took me until Wednesday night to shop for David''s birthday presents, not because I wasn't excited for his birthday, but because his list hasn't changed in 7 years.   For David's birthday, we bought him a train set and a 1000 piece puzzle.  We bought him Mickey Mouse Duct tape, Sponge Bob duct tape and a cook book.   He is still in the phase where he loves Mickey Mouse, Brio trains, and stuffed animals.  Most 11 year olds are into sports, or science, or chapter books, so it was hard to emotionally ready myself this year to once again shop in the preschool department.  For some reason, this year it was harder than in years past.

The decision has been made that David will be staying in 5th grade next year.  He has an awesome teacher, an amazing team and is in a fabulous classroom.  That said, his buddies from preschool are all moving on to middle school.  David is not ready for middle school.  I know this.  However, I have been David's mom for 11 years.  After 11 years, including 6 in Elementary School,kindergarten-5th grade, he is supposed to go on to Middle School.  My friends will be touring Middle School this summer with their kids.  There will be school dances, parties and other life experiences that I thought we would be a part of, and we won't.  David won't notice.  This decision is good for David.  It just is hard for me.  Essentially this is a precursor for me to go through as there are more and more phases of life when my friends children are entering independence, and we are still functioning at a younger level.

In many ways this younger level is great- he still snuggles with me, watches Mickey Mouse, and goes to bed at 7:30.  However, my hopes and dreams for him; to play a sport, learn chess, win the spelling bee, and more have all had to be altered.  I have had to readjust, and most of the time, I have done so, with little problems.  I love David's youthful innocence.  I love his childhood passions.  I love that he still sleeps with 2 Mickey Mouse stuffed animals.  That said, I would love to see what he would be like as a typical 11 year old.  Would he be the star catcher on his team?  A track athlete?  Would he be in theatre?  Would he love the arts?  Who would he be if his DNA had come together as it was supposed to?  Who would he be if he didn't have the duplication on his 15th chromosome?

I know at the core he would be lovable, gentle, kind, and sweet- he is all these things already.  But the other pieces of his puzzle, will remain unknown at least for now.

signs that I am doing it right

Sometimes as a parent we hear our child say things just as we say them and we moan...."ugh, he sounds JUST like ME!" and we wish that we were doing things differently.  As a mom, especially with Jacob, I have a lot of those moments.

 Today he and David were carrying a toy to the basement and Jacob started to scream, "hurry up David, help me NOW, I mean NOW, I need help" and he sounded just like I had sounded a few weeks ago as I was building the boys some furniture.  Sure, I could have been nicer, and I could have used a quieter voice, but as the piece was tipping and I needed help....well, that is just how things came out!

Today, as the boys were carrying toys, and Jacob was dropping his.....well, as he put it, " that's just how it came out....I needed help in a hurry!"

Last night however, I saw my favorite side of Jacob....we were at Temple for Camp Shabbat, and David was "off".  He was throwing his napkin on the floor, dropping crayons, and just looked "off". I was hoping he would be excited to be at Camp Shabbat because a staff member from his sleep away camp was going to be there and they would be singing camp songs.  I was hoping it would bring up good feelings for David, and he would be excited.

I'm still not sure what David was thinking or feeling, but my heart swelled as Jacob supported David through his struggle.  Jacob is amazing with David.  He often puts David's needs ahead of his own in order to ensure that David is happy.  Last night, as Jacob saw David was struggling, he started asking him questions:

"Are you happy?"- no answer

"Are you sad?"- no answer

"Do you miss camp?"- no answer

"Are you afraid you are going to have to go back to camp?"- no answer, but a long look at Jacob- our first hint....there is some worry about camp- Jacob immediately catches this and continues questioning

"Are you afraid you have to go to camp tomorrow?"- no answer

"Do you miss me when you are at camp?"- David's eyes fill with tears

"Do you miss David, Mommy, Jacob time when you are at camp?"- tears fall down

"It's ok, it's not time for camp.  We can figure it out.  Do you want this magnet?"

Immediately, a smile comes across David's face, and Shabbat peace resumes.  Jacob has figured it out, through kind, calm questions, and David never even said a word, yet Jacob has solved his worries.

Tonight we were at Staples getting our computer fixed and Staples is Jacob's favorite store!  He immediately ran off to go look for a new pen or folder, or something that he HAD to have for his art desk.  As he was looking, David found a folder that he wanted.  Without missing a beat, Jacob came over to tell me that he had 50 cents, but David really wanted a folder and a pen and they both cost 50 cents, but he wanted to be the one to buy them for David.  He was willing to not get himself a folder, so that he could buy David what David wanted.  

All of this making David happy, is done with such a calm, purpose, and with such joy for Jacob, that it makes my heart swell.  I hope that I can say that while Jacob may at times model my shortness, and my exasperation, that he also models my kindness and my patience!  I hope that a part of this comes from me......cause it sure makes me proud!

December Vacation

We are at the end of December Vacation and it has been a long two weeks.  This has been potentially one of the most challenging vacation weeks we have had as a family for many years.

For David, I believe, he is loving his classroom so much, and the routine and structure, that vacation for him creates a challenge.  He is a child who thrives on routine, loves his new classroom, and therefore the unstructured days of vacation are a challenge.  He started vacation with many challenging days full of intensity but unable to express what he was feeling.
It is so hard for me as David's mom because I know he is feeling things, and I know that he hates to be defiant and I think it scares him when he is out of control, however I still need to respond to it and set limits for him so that he learns.  No matter how much you are missing school, or how unsure you are of your schedule for the day, it is not ok to scratch me and to yell at me and to throw things.  That said, when David is yelling and screaming, it is a more obvious scream for help.  He calms when I hold him close.  He calms when I whisper and he calms when i finally hit on what it is that is bothering him.

I am often unsure when it comes to parenting David.  It is hard to set limits when you don't know that the child understands.  It is hard to rationalize with a child who struggles to communicate.  It is hard to look at his eyes that are filled with sadness and know that he has a want or a need or to tell you something but that he is unable to communicate.  Luckily, once David's rage is over and his need is met, he quickly goes back to a calm space and he can be engaged in a puzzle, playing with trains or often some other quiet activity.  Given time, David will reconnect and makes amends once he finds calm and is back to feeling comfortable.
After a rough first week David seemed to settle into vacation mode, and has done relatively well since New Years Eve.

Matthew has had a rocky break as well.  He has had some great moments, we had a date that went well, and he has enjoyed some great time with friends.  However, many of his comments are scary and he has had multiple outbursts that leave the family shaken.  There is no way for me to know which of Matthew's comments are made for effect, and which are made because if it is in Matthew's head, it is said out loud.  That said, comments about pushing people over railings, and killing people are never funny and are never things I can take lightly.  I don't know what to do with these comments, except to tell Matthew over and over again what is socially appropriate, how he can better express himself and remind him of the consequences of poor choices.

He has been quick to anger over silly things- a slow car driving in front of us, creates  a panic for Matthew.  Someone looking at him, becomes a reason for him to yell.  Me taking "too long" to get ready, becomes a fight.  With Matthew you have to have a daily plan because empty time is reason for tantrums, however any plan that we have is talked about so many times that the fun is sucked right out of the plan.

For example, Matthew was supposed to go out to eat with friends of ours on Sunday and I told him about it on Saturday.  Every single time we saw each other, he had to make a comment about going out to eat.  Where are we going?  When?  Who is going?  What time?  How many people?  It becomes too much talk, and the fun is sucked right out of the activity.

On Saturday Matthew got upset because he drank almost an entire bottle of orange juice and so i told him that he simply could not buy an iced tea with his respite worker.  I wasn't upset about the orange juice, I simply set a limit that he had enough "junk" for the day. Unfortunately, this limit sent Matthew into a tail spin and he raged at me.  He ran at me and pushed me into the counter in the kitchen, he threw a massage toy at me, and he punched me in the back.  All the while, I spoke calmly to him and reiterated the rule.  I needed him to know that I wasn't upset, and i wasn't punishing him, he simply had already had enough "junk drinks" for the day.

Once his rage was over, he was over it....unfortunately, the impact of Jacob seeing Matthew push me was a catalyst for him to fall apart.  The entire evening was spent with Jacob in hysterics because he was afraid.  Once again, I don't know how "afraid" Jacob was, vs how tired Jacob was from vacation.  Jacob kept saying that I didn't call for help, but I was trying to explain to him that I didn't need to call for help because Matthew's respite worker was there, so we all just had to leave the house and could go along with our day.  Unfortunately, Jacob's own ability to either understand all of this, or make sense of it was a mess, and so he ended the day with an  hour long tantrum.

It isn't easy to be Jacob.  He has his own learning challenges that he is just becoming more aware of , coupled with a desire to be a helper to others, and often I fear that Jacob may crumble under the pressure he puts on himself.  Jacob is expressing a lot of anxiety tonight over going back to school tomorrow and I cant tell if it is because of some social issues at school, concern over school work, or him just not being ready to be back on schedule and routine.

If you had asked me when i adopted these three guys what I thought parenthood would look like, I would have never guessed it would look like it does.  I envisioned a constant stream of friends over.  Hours of watching movies together and family card games.  In reality, friends over is not typically a reality because of Matthew's unpredicatable nature.  Jacob, David and I love movies and need to watch more of them together- it is the perfect time for snuggling, and in place of family card games, we have started to do family puzzles.

Not quite the family I envisioned in my plans, and this was certainly not the vacation I had pictured, that said, if I look back over the 2 weeks we had time at the trampoline park, did 2 puzzles, each that had 1000 pieces, took on 2 new family volunteer projects, spent time with friends, and weathered the storms of our life.  Not our best December break, but honestly, not our worst either.

have i done it good enough for me?

I feel like I am stuck.  I often feel like I am at the top of a parenting cliff with Matthew, and I am avoiding us falling down.  Unfortunately, I am not the only one who is responsible for the decisions that keep us teetering at the top of the cliff, and I am not the only one who will be responsible if we fall, but i will be the one to shoulder  the load, as I am Matthew's mom.

The biggest problem when you are raising a human being is that they are constantly being molded and formed by everything around them.  From the food they eat, to the songs they listen to , and the company they keep, everything is impacting the development of the human brain.

If I had my way, I might choose right now as the best time to put Matthew in a bubble of sorts so that I could have complete and total control over all of the things that impact his development.  Honestly, if I was independently wealthy, I may choose now as the time to take Matthew from school and home school him as a way of purifying his environment.  I am not sure that I could do this and maintain my own sanity, but, as a mom, I would give up anything for my children, and in this case, while it might mean giving up my sanity, it might mean saving Matthew and I am willing to risk my sanity to save my son.

I am constantly trying to figure out right now how much of Matthew's struggles are developmental in nature, how much is due to mental health instability and how much is potentially Matthew's response to being surrounded all day by other children with challenges and mental health instability.  In Matthew's school it is fairly common for children to be out of control.  It is fairly common to be in a classroom with a child cursing, and being  disrespectful towards staff and other children.  It is common for their to be a child in crisis.  Given that this is all common place, I find myself wondering would Matthew's behavior be the same if he was not exposed to the chaos of his school?

Would Matthew curse at adults if he wasn't surrounded by cursing at school?
Would Matthew lash out verbally and physically, if lashing out was not something he was exposed to daily at school?
Would Matthew treat teachers with disrespect if he wasn't seeing others treating teachers with disrespect?

Could Matthew be a different kind of student?  Could Matthew be on a different path?

I have begged our school district to allow Matthew back into a district classroom.  I have begged for him to be educated again inside a typical school building.  I have begged for him to be educated in a school environment that offered him opportunities for music education, for interactions with typical peers.  I have begged for him to be educated in a school that did not have rooms where children are locked in when they are out of control.  I have begged them to let him be back in a school where he was not witnessing children being restrained by adults when they are out of control.

How would Matthew be different if he wasn't exposed to these things?  How would he be different if he wasn't exposed to the language and behaviors he is surrounded by daily at his school?

I know that given his diagnosis, there are challenges that Matthew is likely to face.  I also know that Matthew was a child who struggled even when he was in a special education class within a typical school setting.

I know that given his diagnosis, Matthew is a child who is likely to struggle with limits that are imposed on him.  He is a child who is likely to struggle with self control, and attention to work.  he is a child who is likely to be impulsive and reactive.

What I don't know is how much his current educational setting is impacting Matthew now and how much it will impact Matthew in the future.  I have always felt like Matthew needed to be shown things in black and white.  There is a right and a wrong.  For Matthew, it was important that these distinctions be made clear.  In Matthew's current school setting there is a lot of gray, and Matthew does not understand gray.

I don't have all of the answers for Matthew.  I wish I did, it would make life easier.  Last night as he cursed at me for over an hour I was unsure how to respond.  I have learned over time that the better I am at controlling my own responses to Matthew's behavior, the better I feel about the situation.  I have learned that for David and Jacob it is important for me to remain calm, especially when Matthew is out of control.  However remaining calm when your child is screaming and cursing at you is a huge challenge.  I wanted to scream back.  I wanted to ask him who they hell he thought he was, and why did he think he could talk to me that way.  I wanted to ask him what the hell he thought he was doing calling me names and cursing at me, but I know that in those moments there are  no answers.

Matthew is lost in Matthew.  I wish that Matthew was surrounded by people all day long who modeled how to have self control.  I wish that Matthew was surrounded by people who modeled using nice language, and appropriate social interactions.  I fear that Matthew is responding and getting more and more lost because of the negative interactions he witnesses daily.  I worry that he has come home and told me yesterday and today that he saw his friend be restrained.  That his friend had a crisis.  That crisis staff was in his room.   Today the police were at his school.  He asked me if I knew they were there.  Were they there for him?  Were they watching him?

I worry that he is asking me repeatedly tonight whether the police are coming.  I worry that he is asking me whether he is going back to the psychiatric hospital.  Are these questions his way of telling me he needs help?  Are these questions his way of expressing that he feels out of control?  Are these questions just questions?

I have no answers.  I have my gut instinct, I have my hope and my faith and I have my worries.  I am hoping that Matthew is going through a time of testing his new classroom.  he has been in this room about 3 weeks, so it makes sense to test the staff to see what will happen.  I am hoping that Matthew is just going through a pre thanksgiving bump in the road.  This is his rough time.  Halloween through Hanukah, these are the challenging months for my boy.

I am hoping that with love, consistency, and patience that we can get through this, and take a few steps away from the edge of the cliff.  I am hoping that his teacher and I can find our way together, I will forge ahead and try to build a relationship with her even though my entire being wants my boy out of this school.  I will forge ahead because for now she is the teacher who is spending 6 hours a day with my son, and for those 6 hours she is at the helm of the ship, and she is balancing him on the edge of the cliff.  I will forge ahead because hopefully she is the person who can be my partner in finding him a more stable educational setting for the future.  I will forge ahead, because for now I have no choice.

This is the placement the district is offering, it is the only one they are putting on the table, and so for now, I can only forge ahead towards the future.

Life in the trenches

Last night I read an article about a family in Canada who had to surrender their son with Fetal Alcohol Syndrome to the equivalent of CPS in order for the child to be placed in a group home with the appropriate supports.  A few years ago, I would have been horrified by such a story.  I would have blamed the family.  I would have assumed they hadn't tried hard enough.  I would have done all of this as a way to protect myself from the fact that living with FASD is really hard.  I would have done all of this as a way to protect myself from the reality that it may get even harder as time goes on.

This week, things got harder and they got more real for us.  What happened doesn't really matter, because truly it could have been any situation with Matthew.  Essentially life happened, Matthew got mad.  This time Matthew was with his after school babysitter when she placed a demand on him that he get ready to come and meet me, and so this time the situation wasn't just between me and Matthew and the boys.

While I may have decided it was unsafe to take an angry Matthew in the car until he calmed down, the sitter decided to have Matthew get in the car and she drove to meet me.  The entire way he was threatening her.  His language was horrible.  He threatened physical assault, and he raged throughout the 10 minute drive.  When I met up with them I was met with a fuming Matthew.  He raged at me and threatened to hit me.

We met at a local day care center so that I could get my boys and the sitter could pick up her nephew, and so I did my best to keep calm and just try to get us away from the child care center, in my mind that was of the upmost importance.  Matthew cursed, I tried to remind him to be quiet as little children were around.  Matthew waved his fist at me, I tried to remind him to calm down.  Matthew punched me in the back.

At that point the sitter called 911.

I wouldn't have made the call to 911 at that point, not because I think what she did was wrong, I don't, but more because what I have realized is that there is nothing the police can do to help us.  Matthew typically calms down soon after the police are called, so that is a benefit, however then we have to stay and fill out lots of paperwork, and we talk through with Matthew what he can do differently next time, but then the next time comes and Matthew gets just as angry, and forgets all we have talked about.

This time however the police were more real with Matthew.  I'm not sure if it is because this incident took place in public or because Matthew had physically threatened a non family member or why this time the police were more focused with Matthew on what could happen in the future, but I do know that this was a wake up call for me.  One day, it is likely that I am going to see my son interact with the police and I am not going to have the control over the outcome.  Read that sentence again.....focus on it and pray I am wrong.  I hope nothing more than to be wrong about this prediction.  However, given Matthew's rages and his size and his mental health issues, it is becoming more and more a reality to me that my son will likely end up interacting with the police at some time in his adult life.  All I can do is hope and pray that the officers understand that at the root of life Matthew is a good boy.

Don't take normal for granted

I am not sure if it is easier or harder on those rare times when I  have a break from our normal world and get a glimpse into the world of parenting typical children.  This weekend I spent a lot of time in the world of typical parents, and typical children and in that world I found it oddly uncomfortable and awesome all at the same time.

My weekend started off with plans to go to First Friday Shabbat at Temple because they were celebrating the November birthdays and Jacob was born November 1.  On the way there, the boys were fighting in the car. Likely I should have just gone home at that point, but I was in need of some Shabbat peace and calm and so I pushed on to get us to services.  Sadly, no sooner did we walk into the social hall then Matthew realized that he could not sit where he had planned, and he lost his mind.
It is a very alienating feeling to be in a Temple filled with over 100 people and have no one offer help.  He was screaming and cursing and saying horrible things and it felt like the world was watching, but no one stepped forward to help or to talk to him.  We eventually drove home before services, Matthew was aggressive and cursing the entire drive, and then as soon as we drove into the driveway he immediately calmed and quickly fell asleep.  Apparently, huge public tantrums are exhausting.

At this point I had 45 minutes before a babysitter was coming so that I could go out and hang with some mom friends.   As I left my house just 45 minutes after the tantrum,  I entered an abyss of normalcy.  The moms talked about parenting, school, homework, PTA, and just other mom stuff.  There was no talk of tantrums, no mention of the challenges I had survived just mere hours before, it was as if I just became a typical mom hanging out with other mom friends.  It was relaxing, and rewarding to just chat about the simple things in life.

Then on Saturday I took 4 of Jacob's friends to a SUNY Albany football game.  It was Jacob's wish to have a day just with him, me and his friends.  He was insistent that David and Matthew not be with us, so that he could just have a special day.  During the 3 hour football game my emotions ran the gamut.......from gushing at Jacob and his friends, to sadness that I did not get the opportunity to have these moments with Matthew and David.  From giggling as I listened to 7 and 8 year olds chatter about everything from Justin Bieber to how many gallons of water are in the ocean, to longing for a time that I could share these moment with all of my boys and their friends.   I would give my right arm for Matthew to have one friend who we could take somewhere.  I would give anything for David to have a buddy to be with.  I know it would mean the world to each of them and it would offer that completeness for all of us.

There is something magical about joining a world of 7 and 8 year olds.  As a group these boys were a riot!  I don't think they really watched more than 3 minutes of the game, but in their own minds they could give you a play by play!  They spent the game racing each other, playing imaginary football, (I totally loved watching them do an imaginary kick off, and an imaginary complete pass, they were so in sync with each other that it was hard to believe they didn't have a real football in their hands.)  At one point they found another group of boys and they played a pick up game of football against them and then proceeded to challenge this older group of boys in all sorts of races and challenges.

 If you had seen me at any point throughout the night you would have seen the goofiest smile on my face.  This was a night of parenting that I had dreamed about.  This is what I dreamed of as I filled out my adoption application three times.  This is what I dreamed of when I wrote my "Dear Birthmom" letter, and this is what I dreamed of on the day that I adopted each of my boys.  I had always imagined that we would be "the fun house!" The house where the kids came to hang out, and the house where all the fun happened.

As we left the football game, the boys high fived the SUNY Albany players, and one by one the boys were handed football gloves that the players wore during the game.  As if the night had not been awesome enough, THIS was the icing on the cake!  This was the moment that made the night perfect!  Five little boys treasured these gloves like they were gold.  They retold the story of how they each got their gloves over and over again in the car.  They  marveled at how amazing it was that the players could just "give away their gloves".  To them the football gloves were the crowning glory on an already magical night, and to me it was like the  cherry on the top of a sundae.  It was the extra sweetness, the magical touch.  It was a bit of the magic that we could now take home and hang on to forever.


On the way home from the game we picked up Matthew and David, and I could feel my chariot turning back into a pumpkin.  I begged Matthew to just sit quietly in the car.  I let him sit in the front with the hope that he would just focus on me and let Jacob have his last few moments of awesome, but Matthew is Matthew, and impulse control is not something he excels at.  For Jacob and I we could feel our time in the "land of typical" slipping away.....Jacob explained to his friends what a respite worker is, and why Matthew had been with his respite worker while we were at the game.  He also explained why David was talking so fast........as Jacob put it, "there are 2 David's, one who is quiet, and one who is loud.  The loud David is there first in the morning, until he takes his medicine, then the quiet David comes, and then at night the loud David comes back.  Loud David is funny, but talks REALLY fast, he asks lots of questions, but doesn't listen too much.  Quiet David is calm, but also really quiet."

It was neat to hear Jacob's take on his brothers and to see him explain it all to his friends.  It was interesting to hear him talk about it in front of Matthew and David and they didn't seem phased by what he was saying at all.    For Jacob's friends, these explanations were just explanations....it didn't lead to other questions, it was simply statements of fact that were quickly accepted.  After dropping everyone off at their houses, we returned home and everyone went right to sleep.....except me......I spent time basking in the happiness of the night.  I wish I had more moments of typical, and easygoing, on the other hand, when I get those moments they have such an impact on me, so maybe it is good that they are infrequent, maybe it makes them more special.

Tonight I had the opportunity to do David's first ever long term homework project!  His assignment was to make a poster with facts all about the state of Florida!  Florida is David's favorite state because Disney World is in Florida.  Together he and I searched for all sorts of Florida facts.....the state flag, state tree, state bird.....you name it, and we researched it!

 I loved doing this simple project with David.  I loved getting a glimpse inside his academic world.  David is a hard worker.  He is inquisitive, and dedicated.  This project had a list of questions to answer, and he was determined to find the answer to each question.  I got to watch him type in the questions, and read through the answers.  We then worked together to write out all of the answers on the poster board.  Some of the words David was willing and eager to write, and other times he insisted that I do the writing.  While I know that this project was not exactly like doing it alongside a typical 5th grader, it was as close as I have come to having the parental experience of doing a project with my child.  I am so proud of the work  he did, and the effort he put into making his Florida poster!  I am so happy to have had what I hope is the first of many homework assignments to tackle with David, because even just this glimpse into normalcy was fun and was part of what I dreamed of as I ventured into the world of parenthood.

Childhood is made up of a combination of big moments and small moments, big successes and small successes.  I feel like this weekend I had lots of small moments that felt like huge successes!  I have alternated between loving each of these small moments and feeling angry because we don't get more of these small childhood moments in the life of my boys.  Even something as simple as a playdate is not simple for us.  For Jacob to have a playdate at our house, I have to ensure that Matthew is somewhere else because Matthew simply cannot tolerate Jacob having a friend over.

For many years I thought I would just work with Matthew and teach him how to behave when Jacob has a play date, but in reality, this is not a skill that Matthew is showing success with, and therefor for the sake of Jacob, his friend, and my sanity, we will simply plan play dates when Matthew is with his respite worker.

I will also continue to plan more big moments and small moments, and  I will try to remember that parenthood is a marathon not a sprint.  What I can hope is that when the boys are grown and we are sitting around a table together, they will each have enough small and big moment memories to look back on when they felt like they had enough of me and my love and attention.  As for me, I can hope that I can continue to get moments in the "land of typical parenting", but i will also try to remember all of the things that make parenting children with special needs memorable.  After all, just this week I got to celebrate David reaching out to hold my hand at CVS.  When you wait 10 years for this moment, it is extra special.....and all of the moms in "the land of typical parenting" likely won't get to celebrate a little moment quite as special as that was for me~!