I have a story, a rant, a plea if you will, about the state of things for parents of special needs children, and special needs children in Iowa. Iowa specifically, because that is where I live and have always lived. I’ve known no other state or their procedures for help to parents with special needs, or help to the kids themselves. And this is to say nothing for adults with special needs.

A typical child starts Kindergarten around age 5, and the compulsory age is 6. My other 3 kids also had Head Start at ages 3-4 to help with grade school readiness and socialization. They then go through school, grade by grade, learning alongside their peers. If they fall behind in anything, they get a little extra help. If that still doesn’t bring them up to standard grade level, they may get a 504 Plan or an IEP to accommodate their extra needs. This can also work for behavioral issues. This is valid all the way through graduation of high school. I went through all of that with my older 3 kids. They didn’t need any adaptive equipment or special services besides what the school was required to provide.

Now let’s change gears and look at Felix. He is 7 years old. The AEA (early intervention – Area Education Agency) was involved with Felix from about 5-6 months on, because his dad and I could see early on that he was not developing typically. The AEA helped with physical therapy (PT), occupational therapy (OT), speech therapy (ST), and feeding therapy (FT). At age 3, unless a child is enrolled in preschool, the AEA cuts off support. Support from the AEA can and will resume if a 504 Plan or IEP is needed during school years. But Felix was not remotely ready to be in a room full of his peers at age 3. He didn’t even walk yet at that age. So his dad and I chose to keep him home and continue his therapies through Blank Pediatrics, where all of his other doctors and specialists are through, and work with him at home on school-type learning.

Here’s a breakdown of where Felix is today, at 7 years old:
– Felix started walking at 3 1/2 years old with consistent help in PT. Even now he does not have a consistent or healthy gate, and is clumsy and stumbles a lot. Stairs are a struggle.
– He does not chew his food despite FT, swallow studies, and lots of extra help. So rather than let him choke on food, we spoon feed him food that is either soft like applesauce and mashed potatoes, or whatever we are eating, cut up real tiny so that he doesn’t choke when he swallows it whole.
– He is not aware or able to control his bladder or bowels, so he is fully in diapers 100% of the time.
– Despite OT off and on for most of his life, he is not able to bathe or dress himself. He is unable to write, draw or color.
– He is entirely non-verbal. He has never said one word. This doesn’t mean he’s silent. He makes plenty of noise. He just doesn’t speak. He has had extensive ST to get him to communicate in any way possible: speech, sign language, buttons, flashcards, or even with an AAC Device. But he just doesn’t understand any of it. At this point today, he understands simple commands, daily routines, and bits and pieces of conversation. But he doesn’t communicate back to us. He will grab a hand and lead us to things, or bring us whatever he needs help with.
– His sleeping patterns are random at best. Sometimes he sleeps through the night, other times he sleeps a couple hours. This makes appointment scheduling difficult.

His needs are met about 95% of the time through routine, not communication. Because of this, school is not appropriate for Felix, as help for his high needs is not provided around here. Not to mention his dad and I would have a hard time trusting anyone to meet his needs without neglect or abuse. Felix can be rather rough with his attention/affection, and we don’t want anyone getting overly irritated and misunderstanding Felix’s intent. The same concerns apply to any type of daycare.

I have applied to 2 different places that came with high reviews for ABA therapy, which I have been extremely skeptical of due to the traumatized autistic adults who have gone through such therapy. But I was willing to give it a try due to these agencies’ child-led gentle approach. One agency denied Felix’s admittance due to the fact that he puts his mouth on everything and they were concerned about the spread of germs. And the 2nd agency we’re still on the waiting list for. It’s been many months. I’m losing hope.

In terms of home life for Felix, he needs assistive devices. A few years back we were able to get a Rifton chair for eating and other fine-motor skill activities.

He has since outgrown his Rifton Chair – the price tag….. around $5,000. So it’s not something we can necessarily just replace on our own. The one he has outgrown was gotten through his insurance.

Another thing Felix needs is an adaptive/special needs stroller with a 5-point harness. Since he has absolutely no concept of danger, he tends to elope, and wants desperately to run out into traffic, as he is entranced by spinning wheels.

So in order to go to any events, festivals, farmer’s markets, shopping, or any other outing at all, and to keep Felix safe, he NEEDS a stroller. Because hold his hand just doesn’t work, as he pulls away quite hard, and will get himself into a dangerous situation. The price tag on that is around $2,000-2,500 depending on model.

He also needs a special car seat, which we have been able to get through insurance.

If we were to find a house or an apartment where we had room for him to have his own bedroom, he would also need a safety bed. Supposedly insurance covers those too, but again it would be a struggle. For now, he sleeps in a king sized bed next to me. That way I can make sure he’s safe all night, and I can keep an eye out for seizures. He sleeps in the same bed as his dad’s when he’s there for weekends, as well.

Right now, with all of Felix’s needs and our entire inability to find school, ABA, or daycare that can accommodate Felix’s needs, I stay at home with him and do my best to keep him safe, cared for, and help him learn as much as possible. I rotate all of his therapies so he’s not in all four therapies at once. And we’ve added horse therapy to the mix as well.

We live off of Felix’s SSI, housing assistance, and Medicaid. Therefore, I cannot afford to buy the assistive devices Felix needs. There are a few agencies that help with those, such as Children’s Variety Of Iowa, and Children At Home. But they can only help occasionally and within a specific budget, and aren’t always reliable. Trying to get anything through insurance has become nearly impossible.

I know in other states, there is aid to parents who are their child’s full-time caretaker. However, in order to get that in Iowa, a child has to be given a waiver through Medicaid for one reason or another. I applied for Felix’s Intellectual Disabilities waiver in 2001, being told it would be at least a 10 year wait for his approval. So that would make him 12+ years old before he could potentially get approved, and I could get paid for caring for him full-time. So once again, that leaves us with only his SSI for monthly income.

My point in this entire write-up is that the system is lacking here in Iowa. Felix, and many other special needs individuals, are going without what they need in life, in assistive devices, income, socialization and education, due to the lack of supports in place. It is beyond frustrating! Felix didn’t ask to be born this way, and is depending on his dad and I to get what he needs to live his life with dignity, to his fullest potential. And the systems in place to make sure we have the support to provide that for him are so difficult to get through, it leaves us in poverty and without. SOMETHING NEEDS TO CHANGE.

Supports need to be more easily accessible. Schools need more special needs specialists available. ABA centers who are child-led and gentle need to be more common. And assistive devices should either not be outrageously priced, or they need to be more easily obtainable for those who are in need. I don’t have a proposal for how this can come to fruition, but awareness can bring change by those who are able to develop a plan. I will be writing to local public and government officials about these deficits in our state’s programs. And I encourage anyone and everyone else to do the same.

So while I don’t have a good way to close this post, I’m begging for change. Our story is only one. There are thousands of others going through the same troubles.