Special Needs

The Mother kills the Teacher in Me

May 15, 2012 By Kristen 16 Comments

I have this fear.

It is better when I talk about it.

You see… I am 2 halves of the same coin. I am a teacher. One of my 8 years teaching was actually in special education.

I am a mother. One of my children has special needs and will be in a special education class for at least part of the day.

In this world of special needs I find myself compelled to offer advice on IEP questions when my newfound friends ask them. I can’t stop myself. I can feel their anxiety. I understand their fears. I relate to their worries.

From a teacher’s perspective, the things I want for my child are almost unreasonable. Almost.

If Alexander went to school right now, he would be non-verbal. This is one of my biggest fears. He will not be able to tell me about his day. The twins, at age 3, with their muddled version of reality, can at least give me a inkling of their day. They can tell me if they saw someone or what they had to eat.

Once… I worked in a home for adults with developmental disabilities. One man ate, but had no teeth (they used to pull them when you were institutionalized so you didn’t bite people) and he needed his food pureed. I watched a grown woman put everything from dinner in one blender and puree it together into one disgusting blob. Then she put it in front of him and told him to eat it. She was his caregiver. And – for the record – I did not report her.

Will Anyone Report This Woman If She Does This To My Son?

I believe in inclusion. In our house, Alexander is included in everything. He eats at the table with us. He takes a bath with the twins. He folds his hands in prayer when we pray our bedtime prayers. He brushes his teeth when they brush their teeth. Would it be easier to just leave him somewhere while we did our bedtime our routine? YES. But that is not fair, to the twins or Alexander. Tonight, Alexander raised his hands up to hug his siblings. He turns the pages on a book appropriately. He holds a spoon. He giggles when his siblings get into trouble. He is motivated to do things with them. Because he is included. It takes a lot of effort to make sure we adapt our day to include him in everyday activities. It takes a lot of time to make sure he is able to do these things. As a parent, I know my child will best benefit from this follow through in school. As a former teacher, I realize his teachers will probably hate me for expecting this.

Not only this, but Alexander will never be able to tell me if he sits in a classroom and stares at a wall everyday. (I’ve seen it happen.) Alexander will never be able to tell me if his teacher’s nickname for him is “Special Ed” (the kid’s name was Ed.. and yes, I witnessed it.) Alexander will never be able to tell me if he was offered food orally before it was just “shoved in his tube.” Because honestly? If you are in a rush… no one wants to spend 45 minutes trying to orally feed him and then another 45 feeding him through his tube. **sigh**

I really want to put a video camera on him so I can see and hear what happens all day. That is how protective of him I am.

Because… Who will Report People if they do something to my Son?

As a teacher, if a parent told me they were wiring a student to be in my classroom because they didn’t trust that I would do what was best for him or her I would feel betrayed. I pledged my career to take care of students. As a teacher, it was my mission.

Today, there is no acceptable policy for me videotaping my son’s classroom all day. If I were in an IEP meeting today, I would request inclusion for as much of the day as possible. I would request it in writing. Either hours or specific times. I would request a written note for every time my child was excluded from an activity that he should have been included in. (As much work as it might be to include Alexander, writing a note of explanation is more work.) I would request a log of how much food was given orally. And how much was given through the tube. I would want a private aid with Alexander at all times due to his seizure activity. I would want as much PT, OT, DT, VT, ST, every stinking Therapy we could get. You know why? Because they work. Today.. Alexander sat for 2 minutes unassisted during PT. Several times.

Teachers will hate me. It would be better if I could have a video camera. Because I can’t trust that this won’t happen.

I’m scared for my child who doesn’t speak for himself.

What would you do? Do you trust your school? What if your child couldn’t speak? What would you want in an IEP?

** PS: I don’t want to put limitation on Alexander. God can do all things. But, I am also a realist. There are times when it is ok to embrace the life you might have.**

Filed Under: Social Rights, Uncategorized Tagged With: Battling the Demons Within, Special Needs, Teaching

Sometimes Support Groups Suck

April 17, 2012 By Kristen 38 Comments

When there aren’t that many of you… people tend to find comfort in numbers.

There is a comfort that comes from knowing that someone else really “gets” you. There is a serenity that comes from knowing that your friends can help you navigate a world of complex medical issues.

There is support in those numbers. We love each other. We grieve together. We celebrate together. We understand that life isn’t measured by years or days; instead – minutes…. moments. Life is measured in moments.

But, sometimes support groups are not all they are cracked up to be. Sometimes I feel that WHS is all around me. Like the noose that suffocates me. I just can’t break loose.

Maybe today… I don’t want to discuss deletion sizes and how it may or may not impact our kids.

Maybe today… I don’t care.

Maybe today… I don’t want to be reminded about all the scary dental/urinary tract/ kidney/ EVERYTHING issues.

It isn’t that I don’t care. We have those issues too.

But, just maybe – today … I want to pretend that we don’t.

And yet, being a part of 4 WHS support communities and 4 other special needs communities – complete with notifications, e-mails, and updates, is sometimes overwhelming.

It tears at your heart. … to know so many people who have medical issues. To read the fear of our friends. It isn’t like a “real world” – where you know one child in the hospital… it is this medically fragile world – that can have numerous children in the hospital on any given day.

Sometimes it is us. And we need support. Sometimes it isn’t… and – it can be overwhelming.

Confession: I don’t want to look the future… positive or negative. Because, the truth is – every child (with or without WHS) is different. And one person’s reality is not ours. Nor is our reality someone else’s.

Maybe today – I just want to be us. Family of 5.

ps. I really hope our friends in our WHS community can understand the post of my heart. And thanks, Shell – for letting me share it.

Filed Under: Uncategorized Tagged With: Battling the Demons Within, I've Got an Opinion on Everything, Special Needs, WHS

The hardest working kid in Blogger Land.

March 30, 2012 By Kristen 10 Comments

Sometimes, when I blog – I just need to release that valve of pressure. I unburden my heart, so I can sleep at night. I would like to first thank everyone for their encouragement after reading this post of my heart. The truth is, our house has a lot more happy moments than they have sad.

Want to be happy this Friday? Be happy with us.

Alexander is eating like a champ. He’s been chowing down on lasagna, chicken dinner with stuffing and mashed potatoes, his new favorite – macaroni and cheese, and basically everything. (you would THINK that Turkey would gain a little weight!)

Sometimes – after he eats – he is so exhausted he falls asleep. Also, he has started to “rock” a bit. He needs extra sensory input, so I put a hat on him to give him that stimuli.

Alexander is also getting stronger. The best therapy – is seriously – siblings. Alexander is VERY aware of what his brother and sister are doing. And if they are doing it… then he wants to be doing it. See for yourself.

I’m not going to lie. I LOVE this picture with his hair. Love it.

Finally… if you want to see something really remarkable – check this out. He is truly amazing:

When the kids pray, they thank God for Mommy and Daddy and Alexander – and then everyone else.

Alexander is extremely vocal when the twins are doing something and he is not with them.

Several times a night, they walk up to him – wrap their arms around him – and say, “I love you Little Buddy.”

There is a lot of love going on around here. That makes me smile.

Share the love. What’s happy in your house?

Filed Under: Uncategorized Tagged With: Inspirations, Our Happy Place, Photo Heavy Post, Special Needs

We Are RARE, But no longer Silent or Alone

February 28, 2012 By Kristen 6 Comments

Today is Rare Disease Day. I know… everything has a “day” – huh? But, seriously… sometimes I think of all the rarities out there. Because of our blog and our connections, it seems I meet a different person connected to a rare disease every few weeks. I recently met someone with Dravet Syndrome. I also recently 2 other people with very rare syndromes.

Sometimes I feel so alone. Always thinking… What to do next? How to help my family next? How to help Alexander? How to help the twins? How to keep them together? How to keep us out of the hospital? Do I let the twins go to pre-school? (We have been illness free since they stopped going…) **Sigh** Sometimes it is isolating.

And then there is this DAY. This one day dedicated to Rare Diseases. You know what else? It is on Leap Day… The rare day. How cool is that?

Here are some awesome videos – that I didn’t make. But they are amazing to watch. And inspiring. Sometimes we all need a little inspiration.

I love the one from 2009

This was the National Winner for 2010. It is not as uplifting. It is more “reality.” A sneak peek into the world of someone who cares for a person affected by a rare disease. I love that she is honest. It breaks my heart. It makes me want to look away. But I watch… because she needs me to. She needs to know that her reality is not glossed over. That people understand life is not always easy…

This video is the one for 2012:

Did you make it the entire way through? Some of the struggles we face as families with Rare Diseases are … daunting.

No one really knows what to expect. There are not enough people to have real studies done.
The Doctors. Man – the Doctors…. Each visit is different. Do they have faith in my child? Do they see rare and equate it with death? Or limited quality of life?
No one knows what treatments work. When people have a “common” syndrome – there is a list of treatments “proven” to help.
Usually the list of issues is long. For WHS it is seizures, oral issues, low muscle tone, kidney issues, vision issues, hearing issues, reflux, GI issues, heart issues, urinary issues, spinal issues, cognitive issues, …. the list goes on and on. Most people don’t have any idea.
We just want people to know. We exist. Our children exist. We, as caregivers, exist. Please look at us.

Videos from Rare Disease Day

National Association for Rare Disorders

I don’t want your pity. Our life is good. Just – for people to LOOK at us. Not AWAY from us.

Do you know someone with a rare disease? Want to share their story? I would love to hear it. Did you learn something? I would love to hear it.

Filed Under: Uncategorized Tagged With: Medical Issues, Special Needs

I Never Thought it Would Happen to Me.

January 16, 2012 By Kristen 11 Comments

I’m going to write something that will probably come across as arrogant, rude, and selfish. I’m not going to filter my words or sensor my thoughts. I’m going to write to the people who will read. This is probably one of the few posts I would not share with my children. Ever.

But. The internet is forever, and so I will apologize to my kids first. For not being a better human. And secondly tell you that – every once in awhile – something needs to be said, even if you are ashamed of it.

I never thought it would happen to me.

I never in a million years imagined I would have a child with special needs. Much less – many needs.

You see…. My mom was a strait “A” student. She is smart. But my dad, is so smart – he makes even smart people feel dumb. He scored perfect on his math SAT’s. He missed 50 points on his English SAT’s. He’s a certified genius.

I was part of the “gifted” program. (I told you it was going to sound arrogant.) I don’t mean it to come across that way. Not that many people even know that. So was my brother. I don’t know that I ever took a class that wasn’t CP or AP. (Ok … yes… a science class I had to take when I realized Chemistry was not for me.) I was lazy when I felt like it because usually I could pass a class with minimal effort.

Arrogant me talking again – I never once doubted I would be accepted into a “Non-Ivy-League” college. I only took my SAT’s once because I knew the score was high enough to get in. I didn’t study for my teaching tests and even took the Math test without a calculator. (I forgot it… Who does that?!?!)

Ray is smart. He went to a big college. He graduated with honors. (Me too! Me too!) Several of his nieces and nephews are in various gifted programs.

We have great genetics.

It never in a million years crossed my mind that we would have a child with a genetic syndrome. That would impair almost every aspect of his life. Not in a million years.

You can judge me as you see fit. I’m ok with it. I’m not going to hide in shame because of my shameful arrogance. That we were too bright to have a child with delays.

Guess what? It doesn’t matter how bright you are. I used to “pray” for a healthy baby, but – if I am revealing the secrets of my heart – I never really thought I wouldn’t have a healthy baby.

It happens to other people. I’m impatient. I want instant gratification. I want to multi-task my life away.

Ugh. If I were another parent I would want to smack myself.

** I’ve make a lot of mistakes when it comes to being a “person” **

But, once you enter this world – lights shine on things that clutter the corners of other houses. Without Alexander, I may never have truly understood what it means to fight for your child. Or have fear for your child.

I will tell you – there are many people that have special needs and are denied care or services. You can chose to believe this statement or ignore it. But it is the truth. If you read and research this topic – you will find other stories.

Most parents I know (with children who have many medical needs) have a fear that someday their child will be “cut off.”

Most parents I know (with children who have many medical needs) have had to fight for some sort of care.

Most parents I know… never thought it would happen to them either.

You never know where life will take you. The twists and turns come so fast – sometimes the momentum propels you further than ever imagined. When looking at families around us, we should all be thankful for the blessings we have – because you never know when something life changing will happen.

** I am, for the record, THANKFUL that it happened to me. Everyday with my children (all 3 of them) is a blessing. That isn’t what this post is about. It is about recognizing that life does not always “happen” the way we think it will. **

Filed Under: Uncategorized Tagged With: Battling the Demons Within, Medical Issues, Misunderstanding, Parenting, Special Needs, WHS

If you are Stopping by

January 15, 2012 By Kristen 1 Comment

to check for updates on Mia, I think this is the wrong place to be.

You see… this isn’t her family’s blog, I’m not her mouth piece (she is quite articulate on her own), and she regularly posts at wolfhirschhorn.org.

Yes, I did post about Mia, with her parents blessing… but it was still the post of my heart. Many others have written the posts of their hearts also… but to hear to post of Chrissy’s heart – you will have to wait and look where she regularly writes. Wolfhirschhorn.org.

That is not to say I will never blog about Mia, I have before and will probably do so again – I love that girl. But not at this moment.

And – one last thing. Sometimes waiting is the hardest thing to do. Please remember that the internet can spread faster than a person can think. This is a family we are talking about. This is a child who’s life is being discussed all over the internet.

Filed Under: Uncategorized Tagged With: Special Needs, WHS

Human Rights, Going Viral, and What Next?

January 14, 2012 By Kristen 48 Comments

Well… we went viral yesterday. It was an unbelievable experience. I wrote THIS POST about our friend Mia. I wrote it because Mia’s mom, Chrissy, shared her story. After a devastating visit to CHOP (Children’s Hospital in Philadelphia) earlier this week, she wrote about it HERE. (Her words are better than anything I could ever say.)

I spoke to Chrissy this morning. We discussed many things, and it is with her blessing that I write the post of my heart.

1. There have been several people who have asked “What is MIA able to do?” “What is her quality of life right now? For people removed from the special needs community, this might seem like a reasonable question. But, anyone who knows anyone with a disability will tell you – that question doesn’t matter. It really doesn’t. My son – whom many of you read about on a regular basis – is 20 months old. His peers walk, talk, eat… I know, we have a nephew a month younger than Alexander. Alexander does none of these things.

Does that make him less of a person? Does that mean he will never? Does that mean he should be denied medical treatment?

Many children with Wolfhirschhorn Syndrome have significant delays. G-tubes are a regular sight at our gatherings. I personally, have a love hate relationship with the G-tube. I hate that Alexander has it, but know it has saved his life many times. However, he is learning to eat. He is learning to be “vocal.” He is bearing weight on his legs. I know a lot of children with WHS that walk, talk, and eat. Often our syndrome is associated with Down Syndrome because some of the “classic issues” are similar. Some children have more delays and some have less.

Here is the thing. It shouldn’t matter What any child is able to do at this point. It just doesn’t matter. Alexander is my child, I love him, and I take care of his needs. Mia is the same. It doesn’t matter what she can or cannot do – so that is why I’m not even addressing what Mia “can” do. Because it just doesn’t make a difference All children deserve the right to life.

What if it was your child. It could be. Count yourself lucky if you have never had to fight for your child’s right to live. I have… and it stinks.

2. There has been a lot of speculation weather or not this story is real. I am the most skeptical person around. If I read this on the internet, I would probably question it also. Except – I know it is true. Mia is a real child. Her parents are real. Her siblings are real. I know them. I’ve heard her mom’s tears. They are not people who would “make a story up.” And… if you read through the comments on CHOP’s Facebook page – I have seen other parents already reply they have been told similar things by doctors. I have been told similar things. Before Alexander was released from the NICU, my husband and I asked the doctors (At Pinnacle Health in Harrisburg) what to do if Alexander had a seizure or other medical issue. A well meaning doctor held my hand, looked me in the eyes, and said, “let him pass in peace.” I also posted in February about visiting a GI doctor who refused to help us put weight on Alexander because, “I could help you, but then you will just have a FAT baby to lug around until he dies.”

Two years ago, if you searched Wolfhirschhorn Syndrome on Google, you found these awful stories. Terrible accounts of people with disabilities from case studies done in the dark ages. One of the reasons WolfHirschhorn.org was founded was to tell the real story. The stories of children who walk, talk, play, love, yell (as Alexander is doing now), and … did I mention love? The real story is getting out, but not fast enough. Mia is the ultimate example of people who place value on life based on your contribution to the world. So if you don’t become a rocket scientist, you don’t have value?

If you want to learn more about Mia… to better understand HER… you can find old stories and videos they have posted. Here are some links you can browse if you are still skeptical.

Video of Accepting Mia as she is

If you go to Wolfhirschhorn.org (our stories) on the left: Amelia = 16 posts about her.

3. Lastly, no one expected this story to blow up the way it has. Chrissy is in complete shock. One of the biggest questions asked is, “what can we do to help?” You can post on CHOP’s Facebook page. HERE. You can e-mail anyone you know who has any connections to ANY ONE. You can share this story through social media outlets like twitter and Facebook. You can “link in” to this story. You can Share it with your friends. You can sign the petition for Mia found HERE. You can follow #TeamAmelia and #Lifeformia on twitter. And tag any posts you write about her story. You can read other blogs.

If you have written a blog or article about Mia’s story, please leave a link in the comments section so others can find it.

If you have found an article or blog about Mia’s story, please leave a link in the comments section so others can find it.

If you have suggestions on how to spread the word, please comment… we really don’t know what we are doing!

Our biggest fear is that CHOP will attempt to “wait out” the long weekend in hopes that things die down and people forget. Please don’t let them forget. Continue to spread the word.

Remember… this could be any child. This could be your child.

Filed Under: Uncategorized Tagged With: fears, I've Got an Opinion on Everything, Medical Issues, Special Needs, WHS

My Worst Fear … Is Coming True

January 13, 2012 By Kristen 27 Comments

One of my biggest fears? That someday people will deem “Alexander” not worthy of medical treatment. That some day, some doctor will say, “No more seizure medicine.” “No more g-tube formula.” ” He’s never going to be a rocket scientist – so we will not help him.” Many of you are probably thinking these fears seem irrational.

It just happened. Not to Alexander, but to one of his closest pals, Mia.

Mia is beautiful. She is sweet. She is innocent. She is so loving. She could be Alexander. She has the same syndrome, the same diagnosis, and on paper – they both are classified as MR.

They both take slow steps. But, unless something is done – the doctors at CHOP (Children’s Hospital in Philadelphia) are not going to allow Mia to …. live.

Mia needs a kidney transplant. In 6 months to a year. Her parents aren’t even asking to be put on a list. They want to step up and donate one themselves. They don’t even want to take a kidney donated from anyone else…. And CHOP has just denied them. They say they will not do surgery for Mia because she is considered Mentally Retarded.

They will not give her a kidney. Donated by her parents. Because of her mental IQ. I am in complete shock.

Please help us. Please go and read Mia’s story HERE. Her mother writes it better than anyone else ever could. Please share. Tweet it. Facebook it. E-mail CHOP. E-mail everyone. Please. We know Mia. We love her. I’m asking as if it were Alexander…. because it could be. Please help her.

Filed Under: Uncategorized Tagged With: fears, Medical Issues, Special Needs, WHS

I will FIX you

December 17, 2011 By Kristen 5 Comments

Most of you who read regularly have probably seen the video I made about our feelings when we first learned Alexander had Wolf Hirschhorn Syndrome. If you haven’t seen it… here it is. If you have – skip below. It gets better.

A close friend of mind made a video that touches me in such a way – that I need to watch it every once in awhile. She reminds me constantly that God’s plan is divine for each and every one of us. She doesn’t need to “fix” her daughter.

I’ve been struggling these past few weeks with sorting this out. I posted a little bit about this HERE. This fall has been pretty brutal for Alexander. 4 ear infections, one UTI, a bought with Pneumonia, and 3 seizures. It looks like we may be headed for surgery in the near future. We are going to see a urologist and then move on to a nephrologist. (they look at the kidneys.) We have “classic WHS kidneys.” – We shall see to what extent the kidneys need “fixing” – but it does look like the urologist will be “fixing” us up so he doesn’t have so many UTI’s. We are also going to see an ENT to “fix” Alexander’s ear infections. Probably we will have tubes put in. That seems the most logical choice.

Again. I will move mountains for my child. I do not want him to suffer. If tubes are needed, then tubes it will be. If other surgeries are necessary, then those will be also.

Our appointment on Friday was with the Neurologist. *sigh* This is where the “how much can I ‘fix’ Alexander?” eats at me. His illnesses have caused him to fluxuate in weight gain. He’s been growing longer and not chunkier. He seems to have a loss in muscle tone. Ok. He’s lost muscle tone. But he has this increase in appetite. SO…. I’m thinking that his dose of Keppra is making him a little “off.” We switched to name brand (which controls better) and upped his dose.

Should I ask the doctor to lower the dose a little? To avoid the zombie – like state I’ve seen him spiral into several times? What if he has a seizure then? How can I help him? without needing to “fix” everything about him?

Usually I’m ok. I can balance these dualities pretty well. This past week I was not that fine. I kept replaying my friends video and wondering if I was pushing too hard. Especially when it came to the neurology visit. Keeping the seizures away is our number one priority. All else must take a backseat. What if he just doesn’t have great muscle tone? What if that is the price we must pay to keep the seizures away?

Our visit went well. We had a great talk. We made some plans. Alexander is going to have some good Omega 3’s entered into his diet. I’m going to try to put some weight on him and see if he can “grow” into his dose.

Still… I must tread with caution. To help my son, but not need to “fix” him. Something I will continue to ponder.

Filed Under: Uncategorized Tagged With: Battling the Demons Within, fears, Inspirations, Special Needs, Sweet Child of Mine

It is So Much Work

November 30, 2011 By Kristen 17 Comments

I need to choose my words carefully. I don’t want to offend anyone or misrepresent my true opinions.

Got everyone’s attention now?

There are these tools. For children with special needs. These … amazing resources. They give life (literally) where life would not have survived. They change lives.

- In the literal sense… Alexander’s feeding pump has saved his life. His g-tube has allowed him to be hydrated and nourished; I know he would not have survived the past year without it. You have no idea how hard that is to actually say. Because the reality is I hate that thing. I’m the mom that dreams of ripping that thing out. Who dreams of the day when we don’t need it. Alexander didn’t use the pump regularly until last spring. You can read that post HERE. And…. then he just didn’t eat enough. Went way down hill….. This past summer, there were days where he was not oral at all. *sigh*

- In the life changing ways… we have standers, a wingbo, sensory toys, AFO’s, Vision therapy tools, a z-vibe, the iPad, and tons of other things to help Alexander develop skills he might never have gained. I really feel these therapies are changing the things people (especially with Alexander’s syndrome) can achieve. Sometimes older children are scary. But, what if that is just because they didn’t have access to all the things we have now?

Ok. So here comes the controversial part. To help a child with disabilities reach their full potential requires a ton of work. And… I’m not only talking about from the child.

Don’t get me wrong. Alexander is the hardest worker I know. He puts more energy into sitting up than I put into any activity. And often I find it ** tactless ** when parents of children with special needs whine. This is a little different. It is not a whine. It is not a post about “why is this happening to me?”

But … on a very regular basis – I beat myself up because I haven’t done enough to help Alexander that day.

In case you missed it … Alexander is eating now. And I mean eating like a champ. He is almost 100% oral. I say almost because he is probably just shy of his caloric mark. Here is where it becomes a lot of work.

* If Alexander is fed on the pump – all I need to do is calculate how many calories he needs, formulate a feeding plan, and pump it into his stomach. (In all honesty…. easy) There are other things that go into it… but you basically figure out the best nutritional cocktail and serve it.

* I have fought the pump since the beginning and it has required a lot of extra time and energy. And now… It is a ton of work. Not only does it take him a long time to eat (time that I can’t do much else), but I must also count every single calorie and nutritional aspect of what he takes in. Do you know how many calories are in 3/4 of an egg over easy? Or in 1/2 slice of bread? with a little bit of butter? How about how many calories are in an oz of cheese? Or is it too much to give cheese and eggs on the same day because of protein overload? How many calories are in “some” pizza? Or “some” pork? Anyway – you get the idea. It is not easy to figure out how many calories he is getting during the day to recalculate how many he needs to grow. It is so much work. I’m not going to lie. It is hard work for him to eat and it is hard work for me to help him to eat.

* The same respect, every piece of physical therapy equipment takes so much work. Alexander has to work so hard to move those muscles, but I have to put his braces on, his shoes on, give him time in the stander, adjust the stander, put him on tummy time, help him roll over, help him grasp for things, make the signs for “more” and “all done” when he is eating. We also have to use the z-vibe on him, mimic his coos, practice sitting, practice with the iPad technology…. practice. It is labor intensive and … work.

It is really a labor of love. I once heard a woman speak about how she spent 2 years touching her son on the shoulder to indicate when he should put the spoon to his mouth… until he was able to self feed. Two Years.

I am so grateful for all these things to help my son. But, there are times when it still really lies on the motivation of parents to move past these tools… to put the tools to necessary use – so development happens – and they aren’t necessary anymore. So much work.

So next time you see a parent of a child with special needs. Celebrate any milestone you can. And give the child a high five. … and the mom a hug. Because she probably needs it.