Category

Parenting

The System

I just got done staring at two large packets of government paperwork I need to fill out for services for the little man. I have a sneaking suspicion that these two packets are for the same service – one an initial application and one the follow-up. This is not the first time I’ve had this suspicion, but all of the paperwork is so similar it is really hard to tell.

Dealing with the Department of Human Services is a never-ending flow of paperwork and caseworkers. Every year or so we get a letter informing us that the little man has a new caseworker – I’m assuming this happens because of the massive loads the workers have. Only one has every shown any interest in the little man. Only one time in five years have we ever had a caseworker suggest something to us or even contact us after an initial phone call. [This has always been my #1 complaint with DHS – you have to know specifically what question to ask to get any help.] And of course, she wasn’t our caseworker for long enough to finish that particular application. There seems to be little carryover from one person to the next. Hence my sneaking suspicion that we have already filled out these forms.

Sometimes the paperwork arrives at the house without even a simple letter of explanation. Other times the letter is so full of convoluted government speak I have to read it multiple times to completely understand. Almost always I have to google the service I am filing the forms out for – it is usually something I have never heard of. The letter, of course, reads like it is something I have requested or discussed with the caseworker. Yeah, right. Other times, the paperwork is clearly meant to be completed by a DHS worker in the room observing and working with the little man. I don’t even know what all of these medical terms means, but the google and I will give it a go.

I try not to blame the individual caseworkers for the state of the system. I know they are overworked, underpaid, sometimes – sadly – very jaded. Our current caseworker isn’t even in our county, by the way. In fact, if I wanted to actually meet with her to discuss some of the complicated subjects and forms, I would have to plan for a three-hour drive.

Somewhere along the line we gave up. The only services the little man uses currently were facilitated by the social worker at his daycare. If we have questions, we call and ask her. I’d have to dig the form out just to tell you the name of our current DHS worker (something I will have to do to complete the section of the forms where they ask us, once again, if we have a DHS worker and, if not, do we want one).

He will be starting school next year though and it is time to jump back into the system. I really hate navigating the system. Sadly, I’ve found the best way to get any actual help is to take my [well-educated, white] self down to the office in person. I’d like to be able to do something to help. The people who so desperately need these services are being shut out of the very system set up to help them. I don’t even know where to start though.

Looking Towards the Future

I’m at a conference this week in Washington DC, so I’m reposting some old favorites from the beginning of my blog. I’ll be back with fresh content next week and – in the meantime – keep up with me on Instagram to see highlights of my trip.

This post originally appeared on my blog on June 7, 2013.

Parenting a disabled child takes all of the plans/hopes/dreams you had for the future and tosses them in a large blender then mixes them up and shreds them a bit before spitting everything back out on the other side leaving you a big mess to sort through. Kind of like a giant strawberry smoothie of life – the strawberries are still there and still taste good, but aren’t quite the same as they started.

Many of my hopes for the little man are things typically taken for granted – I hope he can speak; I hope he can sit up unassisted; I hope he can walk. The bigger stuff is still there – I hope he can fulfill his dreams, have a family, find a career, explore the world – but the day-to-day goals overshadow them.

And then of course is the overall hope – that the little man will live a full life regardless of limitations. That one is always in the background. Yes, I hope he can walk someday. But if he can’t? We can provide him with the most-awesome wheelchair available. Maybe one with flames and a rear spoiler. Yes, I hope he can speak someday. But we are working with ipad apps to provide him with a way to communicate with anyone he comes into contact with.

Don’t even get me started on my hope and dreams for my other family members. We just don’t have enough room to talk about all that today.

I am, by nature, a planner and an anxiety-ridden worrier. I worry that my daughter will one-day feel that her brother is a burden – regardless of how much she loves him. I worry that no one will be around to tell her that it is okay to feel that way, that it doesn’t mean she loves him any less and doesn’t mean she wouldn’t do everything in her power to help him. I worry about the other parents out there who feel like they can’t express their frustration, their desire for just a little bit of time alone, their need for a “normal” day, their jealously when the play group parents complain about colds and ear infections instead of therapists, feeding tubes, and an ever-growing list of medications.

I worry that no one has told those parents it is okay to be selfish sometimes. It took me a long time to feel comfortable talking about the challenges my family faces, to shake the horrible feeling of being judged if I spoke one ill word of parenting the child who is such a joy in my life. I worry that no one is there to help those parents when they need help. When they need someone to understand how difficult it is to find a babysitter and just come watch the kids for a couple of hours so they can go to the movies.

I worry that they will start to disconnect from their support systems. I worry that they will start out feeling like super-parents, but deflate when confronted with the burden that brings. I worry this will all be too much.

I worry that they will lose that hope for the future.

Things You Should Know About Raising A Special Needs Child

You will be tired.
Raising kids is hard. Raising special needs kids is hard in different and unexpected ways. Yes, you will be tired because you don’t get enough sleep (who isn’t?!). But you will also be tired of constantly being an advocate, of changing diapers way past potty-training age, of carrying around a non-mobile child, of doling out of medicines, of dealing with the questions, of scheduling doctor appointments. . . I really could go on for a while, but you get the point. Try to find that time for yourself. When I feel like I’ve had enough, I spend an hour browsing in TJ Maxx, Pier One, and Ulta.

You will be jealous.
There will be a day when you look at another child and wish your sweet little guy wasn’t disabled. There will be a day when another mom complains about how horrible it is for their kid to have strep throat and you will long for a life where that was your biggest worry. It is okay. Don’t feel bad for having these feelings. The grass is always greener, right? None of this means you don’t love your kid just the way he is; it just means you are recognizing how unusual your home life is.

You will feel alone.
Where are all the special needs parents? My guess – they are all at home because they are tired. Sometimes raising a special needs kid feels like those early months with a new baby when leaving the house is almost a burden, when it is just so much easier to sit around and cuddle. Fight past that urge. Find a way to get your family out of the house. Yes, you will have to plan and probably bring way too much stuff. Yes, you may need to go at off-hour times when things aren’t as crowded. But just do it. The longer you wait, the harder it will be. Check for special needs support groups or meet-ups in your area. Get connected with advocacy groups. There are others out there, I promise.

You will feel strong.
There is nothing that makes me feel stronger than taking an active role in the little man’s medical care. Telling the doctors and therapists what is best for him and having them work around my expectations. Getting rid of someone who is not a good part of the medical team. Confronting your challenges head on – whatever they may be – can make you feel like a super hero.

You will celebrate everything.
When the little man pronounces a word particularly well (usually “yeah” or “bye” as those are his two best) the house erupts in celebration. It is just exciting. When you ask you four-year-old if daddy hurt his head and he responds by grabbing his head and saying “uh-oh,” you will call the grandparents and post it on facebook. [Yes, that might be an actual example.] The little things mean everything when you are dealing with development delays. Don’t feel bad to celebrate.

You will view everything through a therapy-lens.
One day the little man was obsessed with trying to take a bandaid off of his leg and put it back on. My initial though? “Well, at least he is practicing his fine motor skills.” This is pretty much an everyday occurrence. New toy? – what skills can that improve? Playing with the dog? – is he stretching new muscles? Reading with his sister? – what book contains words he is struggling with?

You will be on a never-ending quest to find toys that fit your child’s development level and age.
When your child’s development starts to fall behind, you will find yourself caught in the trap of toys designed for younger children fitting better with his development stage. But damn it, there just comes a point where you don’t want to buy primary-colored baby toys for your toddler. Be on the lookout for older toys you can modify. I personally love B Toys; their unconventional color scheme makes them appear a little less age-specific. Dig deep on Amazon and you will start finding more appealing toys. And don’t forget to read special needs blogs for recommendations. Love That Max has some great posts with suggestions for lots of ages and stages. When all else fails, make your own!

The little man, an update

The little man had an excellent appointment a couple of weeks ago. This particular doctor is part of the medical home clinic at our local children’s hospital and he operates as kind of a catch-all who coordinates our children’s hospital activities, gets everything to our regular pediatrician, and serves as a place to meet with multiple therapists/services at once. Great place. Love it. They tried to tell us we didn’t have to come see them anymore, but we balked at that. Even if the appointments are just check-ins, we get a huge benefit from them and have someone to call when we are having trouble dealing with the children’s hospital red tape.

This appointment was extremely productive.

#1 – the little man is off of his reflux medicine. This appears to have cleared up on its own with age and weight gain. We have to watch him to make sure he isn’t still having problems, of course, but this is a big step that cuts an entire medicine out.

#2 – the little man is off of his daily Flovent. He was taking the Flovent as a precautionary measure since a three-week stay in the hospital for respiratory issues three years ago. The dose had been slowly cut down and now it isn’t needed at all. Related, but not an outcome from his appointment, the little man hasn’t needed his emergency Albuterol inhaler in two years.

#3 – the little man is off of his nighttime pump feeding. This one is my favorite. The little man takes all of his meals through his g-tube. Until recently, he still received 16 oz. of liquid overnight through a slow feed. This is completely gone. We are all daytime feeding now and I really hope this will be a positive step in getting him to eat a significant amount by mouth. Plus, I just can’t explain how happy we are to be free of the tubes and pump at night. It is amazingly freeing!

What does this all mean? Basically, his ancillary medical issues appear to be clearing up leaving just your basic cerebral palsy behind.
emma-stone-excited

Therapy news – we are talking about putting the little man in hippotherapy (horses!). I really think he would love it and there are some excellent programs in our area. There isn’t an easily accessible water therapy nearby, so this is definitely out next best thing.

Scary news – the little man is turning five in October, but since his birthday falls past the deadline he won’t start kindergarten until 2015. I’m terrified. This fall we are going to start checking out the program in our school district. If it isn’t acceptable, we will move on to look at other options. I don’t have a clue what we will do with him in the summers once he starts school. I have major planning to do. Everything is so easy now. His daycare is his therapy center, insurance pays for it, there are nurses on duty, they are only closed two weeks out of the year, etc. It sounds like everything is going to get significantly less-easy.

Exciting news – the little man calls me “mama” sometimes. It only took four-and-a-half years! He uses the “ma” sounds for a lot of things; most people think he is saying “mama” a lot, but no, he is saying “mine.” Sometimes though, he tries really hard and the “mama” comes out a little bit different, more like one solid word. When that happens, he is calling me. I love it.

Fun news – the little man has learned to say “uh-oh” when he drops something. It turns into an annoying game, but is so adorable you can’t help but play for a while.

Seven Lessons I Learned From My Children

This isn’t really the type of post that appeals to me – a little mushy, I guess. But I’m subjecting you to one anyway.

Life is unpredictable.
Damn right. Nothing you can do about it, so just roll with it.

It is okay – even preferable – to be a little strange.
The daughter takes great pride in her weirdness. She cultivates it and at one time had a goal to be the weirdest kid in her class. I don’t really remember being eleven, so maybe this is normal. But I know that very soon she will more likely try to fit in and become overly-concerned with her appearance and mannerisms. I think we all need to be willing to embrace what makes us unique.

Don’t worry, be happy.
Okay, maybe this one comes from the song . . . just a little bit. The little man is a happy kid (except when he is angry, but let’s ignore that part). Everyone we have prolonged contact with comments on it. He wakes up everything morning happy to see us with a smile on his face. That smile makes me smile and my day is instantly a little bit better. I try to keep a little bit of his happiness with me every single day.

Laugh lots.
Is there anything better than making a baby giggle? Yes, making a four-year-old special needs child giggle uncontrollably by slow-motion-fighting in the living room. Or even better, making him giggle uncontrollably just by popping in and out of a room. The very best? Making your eleven year old giggle uncontrollably. She doesn’t do it very often.

Don’t hide your excitement.
Forget restraint. Throw your hands up in the air and yell “Yay!” when your favorite television show comes on. Kick those legs hard when the waiter brings you dessert. Text all of your friends when you figure something out in a new video game. These are all hypothetical of course, but you get the picture.

Pay attention to the packaging.
Bear with me here, this one is a bit of a stretch. You know how children will ditch the toy to play with the box? Or ignore the gift to put the bag on their head? The little man does this, of course, but the daughter does too. Even at the age of eleven she can still appreciate the packaging. [Well, she doesn’t put gift bags on her head. Let me set the record straight before she reads this and gets angry.] My kids savor every single bit of an experience – they pay attention to the packaging.

I’m not cool.
Right now I have a little bit of cred with the daughter’s friends because I am the young mom with blue hair (my husband is the “fun dad” and I love that because my dad was always the “fun dad” growing up). I also don’t understand how to speak to them and probably treat them a little more adult that I should. Aside from that . . . kids are never going to think you are cool. You are always going to be the boring adults who listen to weird music and watch weird television. Just be okay with it. It is going to happen to them too. Ah, sweet revenge.

P = Parenting, tween edition

PIn retrospect, parenting a baby/toddler is fairly easy. Yeah, you have to keep the little thing alive and teach her to be nice – and all on little to no sleep – but really, your work is straightforward. Then she gets a little older and you have make sure she is on the right path as far as education and social customs are concerned. But again, fairly easy.

Then you get to the tween stage and everything changes.

Suddenly, you can see that the decisions you make have the possibility of a real impact on her teen years. And you remember the decisions you made as a teen – without parental input – making a big impact on your adult life. And you get scared. Terrified really. How do you help your tween on the right path? How concerned should you be about the friends she is picking during this period? How much do you push good grades and studying? What do you do about boys? Is she really going to be graduating high school that soon? Driving that soon? Getting a job that soon? And I still have to keep her alive too?!

Moods, Developing Independence
Oh boy, the mood swings. I wrote an entire post about this one (On the cusp of becoming a walking ball of hormones). It is not unusual to hear stomping feet and slamming doors at our house. I don’t think this will necessarily translate to the teen years, however. Our daughter is in that weird place where she wants to develop new levels of independence and is being allowed more and more freedom, but is still relatively locked down. I’m sure it is stressful. This is also the age where you have to deal with an entire new side of “keeping up with the Jones’s.” Rules and restrictions vary widely from kid to kid and family to family. Some of her friends have stayed home alone, some haven’t. Some can watch R rated movies, some can’t. It is really all over the place. In our case, our daughter spent many years as an only child and is allowed a bit more freedom and access to “grown-up” things than some of her peers.

Fashion, Hair, Beauty
This one is all over the place. My daughter has very particular requirements for her fashion. I don’t buy anything for her unless she is right there beside me or I’m 100% sure there won’t be a problem taking it back. We haven’t had any arguments yet about what is appropriate – my daughter has very long legs that make buying shorts interesting, but not a huge concern – but she is starting to express an interest in certain brands and celebrity models. This also translates over into beauty products. She doesn’t try to put makeup on daily, but does like to rock a blue eye with glossy lips on the weekends. I’m not anti-makeup for her (and very pro-makeup for me), so I bought her a couple of cheap palettes to experiment with. She covers herself in perfume and scented lotions every morning. There have been multiple times when I have said something like, “Oh take that off, I can’t breathe,” so we have had to talk about the right way to apply all of this stuff. And then comes the hair. My daughter has beautiful long blonde hair that she has been growing out for quite a while. She is very particular about how it is styled every morning and rarely leaves it down for school. Many a morning we have a panicked search for a particular bobby pin or hair tie. I only imagine this will get worse.

Boys
Boys are a big one. It is the one that parents worry about most, I think. Tween years are fairly interesting as far as boys are concerned. My daughter and all of her friends are interested in boys – celebrity boys. When they are giggling from her room, you can hear them discuss who is the cutest and who looks good without a t-shirt on (like they have any clue). There is a split however, over whether this translates to the boys sitting across from them in school. Some of her friends have reached the boy-crazy stage and have little boyfriends. My daughter and several others in her friends group haven’t yet.

Trying to parent yourself instead of your kid
This one may be a problem particular to me. I tend to approach my daughter like I am talking to myself at that age. Well, she isn’t me. She isn’t even close to me. Trying to appeal to her this way leaves us both confused, as the other person “just doesn’t get it.” I have to often take a step back and remember not to hold her to my this-is-what-an-eleven-year-old-should-be standards. She has a strong personality that I have to remember to let shine and I try not to pawn my anxiety off on her.

Friends
Friends – so important, but so problematic. Our daughter has a nice group of friends of great girls, but already I see some problems popping up. It is easy to see the beginning of possible teenage problems starting in tweens, so how much do I need to pay attention to these things? I would never want to judge a little girl because of some issues she is experiencing at the moment, but at the same time, I know that the people she hangs around with will be a huge influence on my little girl. Where is the balance there? So far, we have stuck to a philosophy of paying close attention and opening discussion. If I see something going on or hear about my daughter doing something I’d rather she didn’t, we talk about those issues. I make sure not to immediately dole out punishment if it is a better teaching moment instead. We recently had a problem come up where our daughter participated in something at school with a close friend. The friend was reacting to some problems at home and our daughter was following suit. This was a great opportunity to talk about the problems the friend was going through, how she could help the friend in positive ways, and what wasn’t appropriate behavior for her. I think it worked out well in the end. It is a delicate line to walk though.

The Little Man, an update

I spend a lot of time on this blog talking about the big picture items related to raising a disabled child. I talk about the doctors, the challenges, the stress, the appointments, but I don’t really spend a lot of time giving you all an everyday update on the little man. So, here we go.

The little man has seen some small improvements lately. His speech therapist began a new series of exercises a little over a month ago leading to an increase in his range of sounds. We have been hearing all new constant sounds coming out of this mouth. This is excellent!

In addition to the new sounds, he has a variety of words/sounds that he uses consistently. Here is his list: hi/hey, bye, mine/me, yes/yeah, ball, bubbles, high five, [fist] bump, his sister’s name, the dog’s name (he calls both dogs the same name), bite. He uses “mine” more as a question – i.e. “Can I watch my show? Can I have my ball” etc. Also, He is very good as making a “ba” sound for anything that begins with the letter b and says “mmmmm” when he likes a taste with the zeal of someone eating for the first time.

His speech therapist is also working on chewing and pushing out his tongue. The little man understands how to bite, but he doesn’t really chew. She is encouraging him to bite a certain number of times in a row using flavored sticks and gummies wrapped in gauze. He loves the sweet taste, of course, and sometimes cooperates. The tongue is a bit more difficult for his. Pushing it out past his teeth is a challenge, but she has succeeded in getting his to consistently stretch his muscles by putting a flavored tongue depressor on his lips.

The little man expects an audience when he does his therapy and insists on bubbles when he finishes the task. He is also a sneaky little guy who likes to show off by doing the exact opposite of what you are asking.

People always ask if our daughter is “good” with the little man. Well, she reacts to him the same way she would react to any four year old. Sometimes she will humor him and play a bit. To her, he is usually annoying, but great to cuddle. It is awesome to make him laugh, but she tires well before he does. Just because he is disabled doesn’t mean our household is free from hearing “Be nice to your brother” “Don’t smush your brother” “Give that back to your brother.” I consider this a great success. Yeah, she knows her brothers limitations, but treats him just like any other kid. Sometimes, she gets a perk – he can’t follow her down the hallway and burst into her room. On the other hand, he tries to monopolize her sleepovers. It really is your typical sibling relationship, just with some adaptive equipment thrown into the mix.

Shots suck for the little man (and for me too)

Every few months we take the little man to see his neurologist and get Botox shots. These appointments are absolutely horrible and this mom almost can’t handle them.

So first, I’m sure you have all heard of using Botox for fighting wrinkles (and make you look like a frozen-face if done by someone not-so-good), but you may not know about its uses for chronic illnesses. In the little man’s case, it is used to help muscle spasticity/tightness.

Here is how it goes down as explained by our Neurologist (in terms much more graphic than the people putting it into your face use, I’m sure). Botox is botulinum toxin A, the toxin that causes botulism. Botulism is a rare, but awful and sometime fatal, foodborne illness that causes muscle weakness and paralysis. When Botox is injected into a particular muscle, the botulism-style muscle weakness is targeted. Basically, when the little man’s brain sends weird confused signals to his muscles while trying to move a particular body part, that particular muscle is unable to respond. It is really crazy and I don’t like to skirt around the issue – it is a toxin and it weakens his muscles to the point they are unable to naturally respond to commands.

The injection appointment starts with a run-down of the possible side effects – mainly allergic reaction and other typical shot side effects, plus the rare possibility that the toxin attacks the entire body leaving him unable to breathe (always possible regardless of how many times you are injected). Then we sign the waiver and prepare for the horribleness.

The little man’s injections usually target his legs (although this can and will change depending on where he needs it most and where his therapists are concentrating). This means we have to hold him face-down on the table with one parent at his head and one parent at his legs. He is fighting and screaming at the top of his lungs by this point. Then the doctor and someone else nearby take their places on either side and give the injections (4 total for the little man in groups of 2).

It is awful for him and it is awful for me. All I want to do for the rest of the day is cuddle with him – not possible because I usually have to go back to work and he has to go back to school. I try to do everything I can to help the little man with his disability, but I really just hate to put him through some of this. It is hard to be strong when he cries.

Bullies (a.ka. questionable parenting)

As a formerly fat kid (as in, formerly a kid, but still fat), I have a less-than-friendly take on dealing with bullies. I realize sometimes this doesn’t make me the best mother. Take this conversation for example:

O: [tells the story of a boy saying a marginally mean remark to her] I don’t know why he said that.

Me: What a little jerk.

Me: [realizing that wasn’t an acceptable answer] Kids can be mean sometimes, but try not to let it bother you. None of is it true and they are just trying to get a reaction out of you.

O: Yeah, [last year’s teacher] told us how to respond to bullies. He said, “If someone says that you have an ugly shirt say, ‘Thanks! That is the look I was going for!”’

Me: If someone told me I had an ugly shirt I would say, “Not as ugly as your face!” [damn. . . quickly backtrack to some of that “don’t let it bother you” stuff]

Getting the Diagnosis

It isn’t always easy to get a big scary disability diagnosis. Most doctors don’t want to be the one to deliver the crushing news and they certainly don’t want to subject the child to needless medical intervention due to an incorrect early diagnosis. As modern parents, we tend to get wrapped up in horror stories on the television and on the internet. If we aren’t careful, we jump on the tiniest problem and blow it out of proportion while the doctor tries to talk us down. This does not create the best environment for an early diagnosis.

In the little man’s case, his earliest symptoms came on slowly. When he first arrived at our house, the muscles in his arms and legs were tight. A sign of cerebral palsy, yes, but also a sign of nothing at all, a symptom that could go away with age. Even when he started to fall behind and experience more distinct delays, most could be explained by his premature birth.

In fact, when his pediatrician first recommended moving him to a childcare facility with therapists on staff, she wasn’t sure if he would get in and didn’t know if he would have to be there more than a few months. When he was tested by the therapists, he barely squeaked into the school because they had to take into account the premature birth and test him as the age he would be if he had been a full-term baby. Logically, I understand this. There is no reason to throw therapy at a child who is only experiencing normal delays because of his birth situation. There is no reason to stress out the parents and the child, add a new client to an already-full therapist’s roster, and incur the medical bills for treatment the child wouldn’t have needed if you had only waited a couple of months. Emotionally though, I knew my child needed the therapy.

When I looked at the little man, I saw a child who was exposed to cocaine use in utero, had marijuana in his system when he was born, and had next to no prenatal care. Mitigating factors. I could see the whole picture, but the premature birth became the big buzz word and was getting in the way of our diagnosis.

The first doctor to say the big bad “cerebral palsy” was actually the little man’s gastroenterologist. She mentioned it off hand and suggested that we might get that diagnosis in the future. In a way, I think she probably knew what we were going through and was trying to prepare. What she didn’t know is that we were already prepared – my husband’s sister has cerebral palsy. We know what it looks like and he knows that it looks like in a child. We knew.

Eventually the little man started to fall more and more behind. By that point, everyone knew, but no one would diagnosis. Finally our big moment came – a neurology appointment! This was it; we were finally going to get somewhere.

And we did. The cerebral palsy diagnosis came quick and easy. Even though we were prepared to hear it, the words shook my husband and me quite a bit. I wanted the diagnosis. I wanted it so bad because we needed it to keep moving forward and start fighting for our son. But I didn’t really want to hear it.

Next came the MRI and more surprises. We didn’t really expect to learn much from the MRI, but we did. It turns out the little man’s brain had not formed correctly. Something – likely a virus and not the cocaine, amazingly – had interrupted his development. The result, in layman’s terms, is that the little man’s brain doesn’t have as many bumps and wrinkles as the rest of us. Huh, go figure.

Everything changed once we had a diagnosis. It was almost like a switch was flipped and we suddenly went from biding our time to waging an all-out cerebral palsy war.

No one will really win this war, but we will do everything possible to gain every little bit of ground we can. This is a hill I am prepared to die on.