Coping over the long-term

[Anonymous]

We are still in the early stages of our journey. DC is a toddler and while diagnosis is unclear, we’re in PT and speech so far to deal with developmental delays. Some of the diagnoses floating around are more serious/life-long than others, but we won’t be sure what we’re dealing with until DC is a little older.

I’m just curious how other parents stay grounded and sane on this emotional roller coaster. Sometimes after an appointment with a specialist or PT/speech, I just feel so overwhelmed by information and also pretty emotional. I try to think positive and focus on the progress we’ve made and the fact that a couple of the scarier diagnoses have been ruled out, but some days it still feels like so much.

We’re doing what we can to make it logistically manageable - I took a flexible and less-demanding job last year to be able to make time for appointments and such. We hired an amazing nanny, who helps some with therapy follow-through and makes the day-to-day easier (no need to pull out of daycare multiple times a week).

[Anonymous]

Find a therapist for yourself. It’s a lot to navigate on your own.

[Anonymous]

I think it helps to realize that therapy is a business. Therapists wants what’s easy for them, makes lots of money, and let’s them feel good about themselves. I don’t mean this in an evil way, it’s just a common way for people to act in society.

You may need to set up some barriers between what is being advised and what your child needs. Maybe you do have a child with multiple medical issues. If so you have my full sympathy for a major medical issue. But a lot of slightly delayed kids are getting a crazy about of therapy. The child wants to spend time with you. Going to appointments takes time and money out of your relationship.

[Anonymous]

My son was born premature, had multiple issues and needed intensive PT, OT and speech therapy. Then it was confirmed that he had severe ADHD and was borderline high-functioning autistic, something I'd noticed early on, but that doctors and my husband had downplayed. He also has medical issues and anaphylactic nut allergies. I did a ton of research, chose his elementary, middle and high schools to be the best fit for his needs (special programs in Montgomery County public schools), for which we had to move. He had multiple evaluations over the years, and we've had to do much of his therapies and training ourselves, because paying someone else for the number of hours he needed would have been prohibitive.

And now he's a senior in high school and has already been accepted to one college. I have no idea whether he's going to be functional as a freshman, away from our support, but at that point, it will be out of our hands.

It's hard to raise a child with chronic issues, OP. It's mentally exhausting and emotionally draining, and sometimes people don't have a lot of sympathy, particularly for "invisible" disabilities. People have told me to my face that "boys will be boys" and that "ADHD is overdiagnosed, are you sure he has it?". My husband and my family for the longest time, weren't on board with medication. DS had to fail in school and become depressed before my husband relented.

So managing your relationships with experts and your spouse and your relatives and friends is also key to your wellbeing. Some will be supportive, some not. You'll have to be strong, be very knowledgeable, and become adept at holding your own and presenting persuasive arguments on your child's behalf.

I hope all of your little one's issues are temporary, OP!

And PP is right. There are many things you can do yourself, instead of paying a PT/OT/Speech therapist to do.

[Anonymous]

I think as the kid ages you realize that ups and downs are par for the course and realizing that helps you cope with the low times.

Also, if things *don't* go well, eventually you let go of your expectations. I used to have a lot of expectations for how my kid's life would unfold. I have been in a much more brutal and difficult place with my kid (he's a teen) than I ever expected to be when he was little, but I am not more stressed than when he was a toddler having struggles at preschool because I no longer think he will have a typical high school or college experience, or a typical adulthood. Yes, I know that sounds sad, but there is great peace in acceptance.

[Anonymous]

It's so hard at that age and all you can do is the best you can. Its impossible to say if therapies make a difference or not, for some kids, yes, for others no but as a parent my attitude is I'd rather regret doing them than not doing them if there was a chance it would help my child.

Some kids on this board will continue to have life long struggles and others will improve greatly. There is no rhyme or reason to it all.

Hang in there! You'd doing great as a parent.